Seth Roberts: Grandmother knows best about Crohn's Disease

Seth Roberts is the author of The Shangri-La Diet and posts at Seth's Blog about personal science, self-experimentation, and the scientific method.

[Video Link] Crohn's Disease is a type of inflammation of the digestive tract. In most cases, it causes unremitting diarrhea, several times per day. In America, about 1 person in 1000 has it.

According to the National Institutes of Health (NIH) website, the usual treatments for Crohn's are "drugs, nutrition supplements, [and] surgery." The drugs include anti-inflammatory drugs, steroids, immune-system suppressors, and antibiotics. Surgery is common. According to the NIH website, "two-thirds to three-quarters of patients with Crohn’s disease will require surgery." Require surgery? Those are strong words. It's a digestive problem, what about diet? No, says the NIH website. "No special diet has been proven effective for preventing or treating Crohn’s disease. . . . There are no consistent dietary rules to follow that will improve a person’s symptoms." Other authorities agree. "There's no firm evidence that what you eat actually causes inflammatory bowel disease," says the Mayo Clinic. According to the Crohn's and Colitis Foundation of America, "there is no evidence that any particular foods cause or contribute to Crohn's disease."

Reid Kimball disagrees. Reid, who lives in Oregon, designs video games. He grew up in Massachusetts. During his junior year of high school, he came down with Crohn's. It was embarrassing. One day in class, he raised his hand to go to the bathroom. By the time the teacher called on him, it was too late. A few months later, a colonoscopy showed inflammation at the junction of his small and large intestines. The surface should been smooth; instead, it looked cobblestoned.

His gastroenterologist prescribed Pentasa, an anti-inflammatory drug. If Reid had bought it himself, it would have cost $600/month. There's no cure, said the doctor. If Pentasa works, he'd need to take it for the rest of his life.

Pentasa barely worked. It gave him a few more seconds to get to the bathroom. Reid saw his doctor a few months after starting it. Doing better? the doctor asked. Yeah, doing better, said Reid. The doctor did not ask for details. He ordered various lab tests but never learned how little Pentasa helped. Reid saw him regularly for several years, but never told him.

After high school, Reid went to college at the Rochester Institute of Technology. During college, he had diarrhea about six times per day. "Relationships were hard because people misinterpreted why I didn't spend time with them," he says. He didn't look sick, but he was. He often didn't socialize because he was in the bathroom or afraid of having diarrhea in public.

In 2004, after graduation from RIT, he moved to Dallas for a job. Hoping to improve his health, he found a new gastroenterologist. The new doctor prescribed Flagyl, an antibiotic, in addition to Pentasa. After a week of Flagyl, Reid started having extreme abdominal pain. It would be really intense for a few seconds, then die down, then return. He wanted to go to the hospital but was in too much pain to drive.

He emailed his mom about it. She replied that she'd been reading a book (Breaking the Vicious Cycle by Elaine Gottschall) about a diet that had helped lots of people with inflammatory bowel disease. She had learned of it from her mom, Reid's grandmother, who had learned about it from a radio interview. Reid's grandmother had told his mom about it a year earlier but his mom had put off telling him because she was afraid the diet would be too hard.

Breaking the Vicious Cycle describes what's called the Specific Carbohydrate Diet (SCD). A more descriptive name would be the Good Carb/Bad Carb Diet. It was developed in the 1920s by Sidney Haas, a New York pediatrician, to help persons with celiac disease, which in children often causes diarrhea. Before Haas, it was known that persons with celiac disease did not have diarrhea if they ate no carbohydrates. Haas figured out that many carbohydrates could be tolerated. Gottschall's version of SCD says in addition to eliminating certain carbohydrates, you should eat homemade yogurt.

Reid's mother, in her email, said only that certain foods were okay and certain foods were not, and listed a few of each. Reid was impressed and started to eat according to the guidelines. Most of what he'd been eating was off limits, so he didn't eat much. One thing he did eat was minimally-processed deli meat, such as turkey with only water and salt. A week later he came home for Christmas. He read the book. He started eating homemade yogurt and almond bread (made from almond flour). Within 24 hours, he had his first solid bowel movement in eight years. He believes the yogurt was key.

After Christmas, he returned to Dallas. He threw out almost all his food. He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa John's pizza, Mountain Dew soda, potato chips, gummy bears, and so on. He stopped drinking milk. He started cooking from scratch. He made omelets and vegetable chicken stir fry, for example. He made muffins with almond flour, sweetening them with honey rather than sugar. He tried to avoid restaurants. When he couldn't avoid them, he'd order a hamburger and eat everything except the bun.

His symptoms were gone. A few months later, he saw his gastroenterologist. I'm doing great, he said, and showed the doctor a list of what he was eating. The doctor showed no interest. Reid asked if he could stop taking Pentasa. (He had already stopped Flagyl.) The doctor said no, let's wait six months. On rare occasions, maybe once every four months, diarrhea returned. It seemed to be caused by eating out, perhaps by bread crumbs in the hamburger. He stopped taking Pentasa. Nothing changed.

In 2006, he moved to San Francisco. To get a colonoscopy, he saw a gastroenterologist at the University of California San Francisco. He told the new doctor that eight years of diarrhea had ended exactly when he started the new diet. The doctor showed no interest. Reid had no symptoms, but the doctor gave him a prescription anyway. "I don't think you can treat Crohn's with diet and Pentasa," he said. The new colonoscopy showed the cobblestones were gone. It did show one abnormality: a narrowing at the junction of the small and large intestine, presumably due to scarring.

In the summer of 2008, Reid found that strawberries caused intense abdominal pain. He attributed this to blockage caused by strawberry seeds. In 2009, abdominal pain became more frequent, happening twice a month. Not wanting to remove more and more foods from his diet, Reid saw a naturopath. She recommended glutamine, an amino acid. He started taking it ($30/month). He found he was now able to eat strawberries and several other foods, such as carrots and spinach, that had previously caused trouble.

Now and then Reid has told others how much SCD helped him -- on Facebook, for example. A common response has been If this diet is so good, why didn't my doctor tell me about it? Another response has been Show me a randomized double-blind study that shows this diet works better than placebo. Both facts (no mention by doctor, no study) have the same explanation: The medical system is not purely devoted to helping sick people get better. Great ideas aren't always tested or even noticed.

If doctors are going blind, the vision of those who want help is improving. Gottschall's book, from a publisher you've never heard of, has sold more than a million copies and was recently ranked 894 on Amazon. Not bad for a book published in 1994. To read a few of the hundreds of reviews on its Amazon page is to understand why. "Nothing short of a miracle," says one. If you read them, and fail to see that the diet works at least some of the time, you're not paying attention:

I'm on Day 10 of the diet (followed 98%, I'd say), and I don't have any symptoms of IBS [irritable bowel syndrome] anymore -- a disease I had to live with for the last 10 years. Doctors and pills never worked for me, this diet already does.

Yet the diet's Wikipedia page has been challenged -- not important enough! There's a Chinese proverb: Those who say it can't be done shouldn't interrupt those doing it. Or delete their Wikipedia page. For his part, Reid is making a documentary about others like himself, who have used unconventional ideas to get relief from Crohn's.

Research related to SCD. CureTogether survey of Crohn's treatments.

• [Cocomaan]

  Very cool, I’m really glad he managed to control his disease with diet. It’s GIGO all the way down, you know? Garbage in, garbage out.

  Having gone through Lyme disease myself, I know what it’s like to fight that uphill battle against the CDC recommendations.

  • [Daniel]

    Cocomaan, do you have any recommendations regarding Lyme disease?  Know someone who was pretty badly devastated by it and that person is really casting around for stuff that will help.

• [Evan G.]

  I don’t want to sound like a jerk, but this…

  “He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa John’s pizza, Mountain Dew soda, potato chips, gummy bears, and so on.”

  Even if he wasn’t trying to treat his illness with a new diet, did it never cross his mind that someone with a digestive illness might want to not eat a ton of crap? 

  • [Ramone]

    True enough, but students may tend to think in economic terms, less so in healthy choices when away at college. 

  • [souper_crackers]

    My dad has had Crohn’s disease for the past 25 years, and the abominable diet is a result. Where there’s no nutrition, there’s no irritation. My dad finds it easier to eat poorly (or not at all) most days, because he knows that the things that we normally go to for a healthy diet (most fruits and vegetables) trigger flare-ups for him. 

  • [SamTheButcher]

    Evan – I have ulcerative colitis and was told that diet had no effect, I could eat what I want as long as I took the medicine.

    I’m on my 7th year on the diet mentioned above and can verify that diet has a HUGE effect. Once I stopped blindly trusting “western” trained doctors, I saw that what I eat needed to change.

    • [blueelm]

      But blindly trusting “Eastern” is ok? Or else why the distinction.

  • [Melissa]

    Doctors sometimes tell you that Crohns disease has nothing to do with diet, so some patients develop a fatalistic attitude about food. 

  • [lionelag]

    The eating crap is part and parcel of having Crohn’s disease.  One of the first things they tell you, if you have the obstructive type, is to reduce your fiber intake down to at most a couple of grams a day.   That’s really, really hard to do while eating well; think about it– no wheat bread, no non-kid’s cereals, etc.    My favorite food on earth is lentil soup– prior to the surgery I had last fall, eating it would put me into pain for a day and a half.

    It’s the disease, not the person.  Been there.

• [Random_Tangent]

  This just in: The Oxford English Dictionary has officially changed the plural of anecdote to data!

  Congratulations!

  • [Mark_Frauenfelder]

    You are looking at an old dictionary — it changed the *singular* of anecdote to data!

    • [mark]

      No, that would be changing the singular of anecdote to datum, which would be correct. 

      • [Mark_Frauenfelder]

        And that would ruin the joke, too. Oh well, it wasn’t that funny to begin with. Carry on.

        • [Just_Ok]

          Ooohh, you’re going to get sued for saying “Carry on”.

  • [retchdog]

    if one can conduct near-zero risk experiments on oneself, what is the harm in that? it’s worth noting that if a hypothetical treatment slightly harms one half of the population while slightly helping the other half, our randomized trials would most likely estimate a zero effect. indeed, personal genomic medicine is chipping at this problem from the scientific trials angle by exploiting genomic information. seth roberts complementary message is roughly that, as long as the unproven treatment is not dangerous, there is no harm in trying it on oneself.

    • [Sam Ley]

      Trials these days are good at catching the effect of multiple variables. If it helps half and hurts half – the study will detect that since they are tracking more variables now than just “help or not help”.

      I’m all about people being engaged in their own healthcare and trying things out, but don’t confuse the colloquial term “experiment” with the scientific term – they are different things.

      • [retchdog]

        if you’re trying to convince me that we’ve quantified every possible variation in personal biochemistry, you have an uphill battle.

        i know what an experiment is and intentionally avoided using that term for exactly the reason you stated.

        • [Sam Ley]

          Every possible variation in biochemistry? Of course not. A very large number of them? Sure. You seemed to be suggesting that studies would miss a statistical improvement in one aspect of the group if it was matched by an equal amount of harm in another aspect of the group, which isn’t the case.

          Real effects can certainly get lost in variables we don’t yet have a handle on, but they have a lot fewer places to hide than before, and we still have tools for determining if a missing variable could be causing the result, even if we don’t know what that variable is yet.

        • [retchdog]

          specifically, i said a _small_ amount of harm/help. of course, if the amount were large (keeping in mind the sample size) one would find a bimodal distribution or whatever (unless of course much less than 1/n of the population is helped, &c.). there are more issues, and one notes that those methods for finding signal without covariates are not generally considered to meet the evidentiary standard for clinical trials (the FDA is conservative, as it should be). so… since these methods are generally exploratory in nature, are they really A LOT better than self-experimentation? either case would serve as a “pre-filter” step for formal trials, no?

          again, what’s the harm in self-experimenting with a low-risk alternative treatment? keep in mind, that the $600/mo. cost of the “right” treatment carries its own risk (whether or not it is buried in the cost of medical insurance).

  • [Bryan Castañeda]

    A man cures himself of a highly embarrassing, debilitating disease that was preventing him from living a full life and the best you can do is respond with some cheap slogan?

    So if a close friend or relative, say, was suffering from Crohn’s would you mouth this platitude or would you encourage him/her to try a potential cure that is cheap, easy and has helped others?

    • [kjs3]

      Who, precisely, is saying that diet modification is something that should not be tried by Crohns/Colitis suffers?  Seriously…name them.  Because noone is saying that.  So how about cutting out that diversionary bullshit out. 

      It’s not a cheap slogan to advocate that one shouldn’t declare victory over a disorder when there’s no evidence the proposed cure works beyond ancedote, that best case the proposed solution works on a subset of the victims, and there’s significant debate over what constitutes the whole of the diagnosis.

    • [george57l]

      He has NOT cured himself.  There is no cure. He has substantially ameliorated the symptoms.

• [mark]

  The most important thing to remember about the placebo effect is that it actually works. 

  • [John Davis]

    Your comment is just as biased and bigoted as the doctors who wouldn’t listen when he said that changing his diet was handling the Crohn’s disease.

    What works, works.

    Don’t fight it.

  • [Bryan Castañeda]

    And how do you know this is a placebo?

  • [Darla Sowders]

    Then why didn’t the pills work? Presumably, he would have thought they would work. What happened to the placebo effect then?

  • [Ruths_Real_Food]

    If you have diarrhea for eight years and do something (diet, medication, acupuncture, whatever…) and then don’t have diarrhea for the next 2 days, that’s the placebo effect.

    If your symptoms disappear for good and a colonoscopy proves that the actual damaged tissue is healed, that’s a helluva placebo!

    Someonewho can see a colonoscopy – hard evidence – and brush it off as placebo, is someone who has a priori has decided that diet couldn’t possibly help, and that’s not scientific reasoning.

  • [Elisa Gabbert]

    What’s disturbing is when prescription drugs don’t work as well as placebo.

• [lese]

  While it’s hardly in the same league…. After half a dozen years of worsening allergies leading to weeks-long sinus infections multiple times per year, I finally had an allergist say “You know, there’s this nasal lavage thing you could try, it has no side effects and is nearly free….”. It was like flipping a switch for me. I’m still miffed it took so many years and several doctors and allergists before someone suggested it.

  (And yeah, that’s an impressive amount of junk food….. Brings the ‘Doctor, doctor, it hurts when I do this/Then don’t do that’ j0ke to mind.)

• [bigfatlamer]

  So basically, he went from eating a diet entirely based on what is available at 7-11 to a diet based on eating actual food and his symptoms improved. No shit batman.

  • [Bryan Castañeda]

    If it’s so obvious then why didn’t his doctors know about it? Why did they prescribe him expensive drugs instead?

    • [jantina]

      It might be time to listen to this episode of TAL on the medical industry.
      http://www.thisamericanlife.org/radio-archives/episode/392/someone-elses-money 

• [Sam Ley]

  Isn’t this still just an anecdote? An n=1 study that doesn’t really teach us anything? I’m glad he was able to control his condition without medication, but to say that the medical industry doesn’t care about people getting better, hence anything that contradicts the industry must be correct is a pseudoscientific leap.

  I don’t say “Show me the double-blind blah blah blah” to be a nay-sayer, or to poo-poo his experience, but history is full of cases where something that appears to work occasionally on some people is actually harmful in most cases. Going off the anecdotes only causes the exact problem that science is intended to solve.

  A documentary might be a fine idea, but the result should be research on the topic – not just “hey everyone ignore your doctors they don’t know crap.”

  • [freshacconci]

    I agree with this. Isn’t this the same as the anti-vaccine types? Let’s just ignore medical science because of some anecdotal evidence? And then blow that up into a movement that may be dangerous? I’ve had a number of people in my life with colitis–a distant relative of Crohn’s. Diet is a huge part of dealing with colitis and the medicinal treatments are harsh. But I’d be hesitant to deny all medical science based on one person’s story. Is it just me or is it possible to strike a balance between the extremes. Yes, doctors are often too eager to prescribe medication but the naturopath industry is just that, an industry, with its own bottom-line agendas. Yes, eat healthy and you will be healthy. But what happened to this guy may not happen to everyone with Crohn’s and sowing conspiracy-like mistrust in conventional medicine often does much more harm than the medicine itself.

    • [Vengefultacos]

      Well, no, it’s not just like anti-vaccine wackos. In the case of the “vaccines made my daughter retarded!” crowd, they are flying in the face of lots and lots of credible double-blind studies. I.e. crackpots vs. established science. They don’t have anything to offer but the “medical science/big pharma is trying to silence me!” claim. In this case, we have anecdotal evidence vs. dismissal by the medical establishment. To my knowledge, there are no studies actually showing cannot be helpful in some manner. It’s just the fact that, unless they are interested in carrying out a study on a new potential treatment, I think most doctors are perfectly happy repeat what they have read… diet hasn’t been proven as a treatment.

      • [kjs3]

        And if you read this guys blog, he’s pushing “Ultrasound causes autism”. 

        • [blueelm]

          He’s got a nice load of bull about climate science on there too.  Honestly, after reading the guy’s blog I’m shifting my opinion from “good for him, but don’t assume you can cure everyone’s Crohn’s” to “Snake Oil Salesman who doesn’t give a flying f*ck so long as you buy his junk.”

          Whine all you want, I learned the hard way.

  • [Peter Schmidt]

    What’s important to understand about anecdotes is that they are terrible as proof but they are excellent as disproof.  Placebo effects are well established to last no more than about 2 years at the most — see the work of Jon Stoessl at UBC, etc.  This is something other than placebo.  Could diet cure this disorder?  As my thermodynamics professor taught me, there is a fundamental law to consider: anything that happens is possible.

  • [jimkirk]

    “…they don’t know crap.”  I see what you did there…

  • [Bryan Castañeda]

    The point is not to ignore doctors. The point is not to suppress relevant evidence and to be aware that doctors, like any other profession, are not interested in fixes that do not require them.

  • [crashnbash]

    “history is full of cases where something that appears to work occasionally on some people is actually harmful in most cases.”

    Being a Ulcerative Colitis patient myself I agree that what works for one person may not work for the next. Throught the past 6 years of living with this disease I have met A LOT of Crohns and UC patients alike and not a single one of us has the same exact dietary needs/restrictions. Its trial and error for all of us. Even over the years I keep having to re-adjust my diet because what I could eat 6 years ago, doesn’t do well with me now.

    My best friend has UC also and she can eat almonds, nuts, etc and drink caffeine. I on the other hand don’t go anywhere near those because they destory me, however I can eat gluten and a moderate intake of dairy, and those are defintie “no way in heck am I eating that stuff” for her. We have the same disease and surprisingly are on the same medicaiton but our diets are completely different. I have read into the SCD and I see some of those foods you are allowed to have are on my “I’ll be in the bathroom for hours” list. So I am hesitant to go into that. If i prepare my own meals and stay away from the restaurants and fast food I can actually feel like I have normal bathroom trips. The other factor people don’t contribute is the stress levels in someones life. You could be following you dietary needs to a T but if you mom dies, you are getting sued and you lose you job, it doesnt matter whats going in you, its going to be painful and not fun ont he way out because the stress on your body (at least from my life expereinces)

    I do feel doctors need to be more active in understanding the dietary needs/compliactions for their patients. Diet does play a huge role in these two diseases and they need to start acknowledging it and being proactive in assisting us instead of reactive when it comes downt ot waiting for us to flare or relapse.

• [bigfatlamer]

  Also…I haven’t watched the trailer but is he really taking colloidal silver? Pretty soon he’ll be wishing he could trade 10 episodes of diarrhea a day for the gray-green coloring his skin will have.

  • [Mark_Frauenfelder]

    If you had watched the trailer, you wouldn’t have had to waste your time commenting.

    • [spool32]

      Trailer was longer than writing comment. Which was the larger waste of time?

      • [Mark_Frauenfelder]

        Good point! I was pointing out that the colloidal silver / agyria connection was in the trailer, but I didn’t explain myself well.

        • [bigfatlamer]

          And I should have pointed out that I didn’t watch the trailer because YouTube is blocked at my place of employment.

• [Lobster]

  This is great and all, but it’s one anecdote and the fact that it was a GI problem does not mean this proves that diet alone can usually solve Crohn’s. 

  I mean, if your stomach is literally GONE, that’s a severe problem with the GI tract, too.  Doesn’t mean you can fix it with vegetable stir-fry. 

  I feel great for the guy and I’m glad he managed to beat his disease.  But saying that Crohn’s Disease in its entirety can be cured by diet and that big mean pharma is trying to sell you expensive drugs and big mean medicine is trying to give you unnecessary surgery sounds a lot like woo. 

  This is no different than “Doctor” Nicholas Gonzalez claiming he could have cured Steve Jobs with a coffee enema.

  • [Bryan Castañeda]

    Of course it’s different than your coffee enema example. It’s different b/c it WORKED.

• [Rob Beschizza]

  “Another response has been Show me a randomized double-blind study that shows this diet works better than placebo. Both facts (no mention by doctor, no study) have the same explanation: The medical system is not purely devoted to helping sick people get better. Great ideas aren’t always tested or even noticed.”

  Your explanation for the lack of study is vague intimations about scientists’ other ‘devotions’?

  • [KvH]

    Exactly.

    Although to those demanding a double-blind test I would point out it’s pretty much impossible to double-blind a diet. Doesn’t mean it can’t be studied though. Anecdotes can point a possible direction but to leap to conspiracy theories from that is weak.

    • [daen]

      Although to those demanding a double-blind test I would point out it’s pretty much impossible to double-blind a diet

      No, that’s exactly the link I posted earlier, to the pediatric study of glutamine.

      [Edit] Apologies, I only posted the reference, not the link …

      http://journals.lww.com/jpgn/Abstract/2000/01000/Double_Blind_Randomized_Controlled_Trial_of.22.aspx

      • [KvH]

        That’s a dietary supplement, those can be double-blinded. I’m talking about the article which talks about an entire diet. In order to double blind that participants would have to get all their meals from the study, for years. And I’m not sure how to make foods so you can’t tell if you’re getting carbs or not. Or how to make fake yogurt.

  • [mark]

    That would be a great study. “Subject 37 thought he was eating a chili dog, but in reality it was a placebo.”

• [Xibu]

  I suffered similar issues for about a decade. Pretty much stopped when I started eating yogurt regularly. Got the idea after reading about a study where IBS was controlled through the use of Pig Whip Worms. 
  Those years caused problems that were painful, embarrassing, inconvenient, and sometimes downright scary. And when I told my doctor about my solution, I got pretty much the same response that Reid did. 

  • [Mr. Snarkstein]

    errr… IBS and IBD are completely different.

    • [Xibu]

      Not saying they are the same. I was never specifically diagnosed with anything. But fixing my GI problems with a change in diet got a very uninterested response from my doctor. 

• [Max Shron]

  It looks like Crohn’s disease is too wide a diagnosis to fit all of its sufferers. Sledgehammer where a ball-peen would do. There may be large swaths for whom diet has no effect, and some who do, and they may (in fifty years time) turn out to have had separate diseases lumped under one name.

  It will be tough to do double-blind studies until you can figure out who has this kind and who doesn’t.

• [Cllzzrd]

  My girlfriend has Ulcerative Colotis, which is like Crohn’s but it affects a different part of the intestines. She had it flare up last summer and heard about this diet and started following it. It helped her tremendously. Once she had been on it for about a week her stomach rarely hurt. If she ever ate something that was not “approved” she would start feeling it about 30 mins later. After about 9 months of being on the diet she started adding food back into her diet. By the end of the school year we were able to go out for ice cream without her feeling any pain from eating the milk and sugar laden food!

  Even though this diet has not been studied, I believe it can work for people who have Crohn’s and UC. It does not cure the disease, but it helps relieve a lot of pain.

• [Julie]

  I’ve been on the diet for about two months now, and my persistent gastro problems are almost gone . . . it’s rough the first couple of weeks when you’re detoxing from carbs, but now I don’t even crave them, and I’ve lost ten pounds!

• [Sam Ley]

  The woo-factor of this post is fairly high for BB standards… We have pseudoscience, appeals to conspiracy (wikipedia edits as conspiracy?), anecdotes presented as evidence, etc. Someone call Neurologica for an edit!

  • [Rob Beschizza]

    Along strikingly similar lines to the experience of the subject here, I fixed my persistent skin issues by cutting out sugar from my diet. Doctors insisted that diet has nothing to do with it at all, that it cannot cause skin trouble and the like.

    It turns out that that given wisdom was a persistent echo of old, substantially obsolete research and we now have a much better understanding of how diet effects skin condition in general. 

    But doctors don’t read every last paper in every last field of their specialization. They’re often clueless and insufficiently engaged with their patents and the unique characteristics of individual problems, the lifestyles (such as diet!) that make it hard to treat certain ailments.

    What frustrates me about Seth’s narrative here is that this mundane incompetence isn’t enough for him. There have to be hints of profit-seeking, wikipedia-editing scientific elites, marginalizing us ruddy-faced, projectile-shitting galileos of the personal anecdote. But who hears the whistle?

    • [Sam Ley]

      Rob, I hear what you are saying about doctors not always being well educated – even within their own field. So much science is being generated that someone expected to have 10 hours of patient interaction every day is hard pressed to keep up.

      I do think that the younger crop of doctors has a bit broader view on things like lifestyle and diet, and their effect on various diseases. Though there is still a big difference between saying “gluten-free cures X” and “Diet is complex, you should try making some changes to see if you feel different”. Diet is one thing that is easy for people to play with on their own, and as long as you stay within a few general bounds, hard to screw up too severely.

    • [Matt Fisher]

      i think you’ve hit the nail on the head here.  The only thing the docs’ disinterest speaks to is their laziness, but it shouldn’t be considered indicative of the overall goals shared by the medical community as a whole.

      As any responsible doctor or scientist will tell you, the lack of studies in this area isn’t evidence that the diet doesn’t work.  But these anecdotes are neither evidence that it does.  There are far too many variables to take into account to possibly glean anything definitive from this story.  Barring the colloidal silver it doesn’t sound like it’s harmful, and in this case clearly anybody would benefit from losing the TV dinners.  So people should consult with their doctors about diets that recommend anything they’ve never heard of but otherwise feel free to try it out and be happy with whatever results they get.

      In the meantime someone might fund a proper study but, as was pointed out earlier, nobody stands to gain anything without a pill to sell at the end of it.  Studies are expensive and take many years – there’s no possibility of recouping one’s costs. 

      You know a good way to make money from unproven, anecdotal cures?  Write books about them.  Want an extra edge?  Portray these cures as being subversive, something big pharma doesn’t want you to know about.  Being healthy has its merits.  But being a healthy rebel is sexy.

      • [kjs3]

        The only thing the docs’ disinterest speaks to is their laziness

        No, it doesn’t.  The guy *lied* to them and told them their treatment was beneficial.  They chose to continue with accepted treatments rather than quakery.  He’s now shilling his “cure” as a book.  You want to give that credence, go for it, but don’t feign indigence if those of us who are a bit more critical don’t go along.

        • [Reid Kimball]

          kjs3, you are right I misled my original gastroenterologist regarding the effectiveness of Pentasa.

          I am not selling a book, Seth Roberts, author of this piece about my experiences is selling a book.

          I see several people are confusing certain facts between Seth and I.

        • [kjs3]

          Reid:

          I have indeed dovetailed you and Seth.  That’s my mistake; my sincere apologies.  It only appears that you’ve hitched your wagon to a shill, giving him ammunition to perpetuate a fraud, by mistake.  Not sure that’s exoneration, but you got me.  You are, of course, not compensated by Seth for using your story.  Right?  Because otherwise, it doesn’t change a single thing.

        • [Reid Kimball]

          No, he didn’t pay me for my story. I share it freely to anyone who wants to know.

    • [asuffield]

      I fixed my persistent skin issues by cutting out sugar from my diet. Doctors insisted that diet has nothing to do with it at all, that it cannot cause acne and the like.

      Oh, I know this one. Acne is something that has actually been given properly blinded studies for most of these things, and the following points have been clearly demonstrated:

      1. None of the major diet groups, including sugar, affect acne
      2. Stress does affect acne
      3. Placebo effects reduce stress

      Doing almost anything that you genuinely believe will help acne is quite likely to work.

• [ill lich]

  I get the impression doctors hear “natural cure” and immediately think quackery, a la Kevin Trudeau’s  “Natural Cures They Don’t Want You To Know About.”

• [Jackie]

  This is very misleading to the millions of people that suffer from Crohn’s everyday like myself. Most individuals that live with this know their “trigger” foods and learn to stay away from them. I can say though that if you are a person suffering from this disease that yogurt should definitely be a part of your everyday diet. I feel for the guy…know what it’s like to “lose your shit” so to speak.

  • [Sam Ley]

    EDIT: Meant to reply to Peter S.’s comment above, not Jackie.

    Certainly – if someone is having an experience of any kind then there is a physiological basis for it. Placebo is a possible cause for his experience, but that isn’t at the heart of my concern about the piece.

    Anecdotes don’t make good disproof, no better than they make proof. The only statement his experience disproves is, “Under no circumstances do people with his specific variant of Crohn’s, age, and other health factors benefit over any period of time from any different diet.” – which is so specific as to be a straw man.

    There are ways to study this sort of thing, and in the meantime it is fine if people experiment with their own diets. The thing I object to is the “Look at this handful of people who’ve felt an improvement in their symptoms at the same time that they made this diet changes. Medicine must be wrong!” Just like all collections of anecdotes, you don’t hear from the people who tried it and saw no improvements (cause they wouldn’t make a documentary about NOT succeeding), you don’t hear about the other changes these people are making at the same time, or have their experiences overlayed over natural shifts in the progress of the disease for different people. The only reasonable conclusion that can be drawn is “maybe some long-term multi-variant studies are in order”.

    • [Dennis]

      You find me one industry willing to fund a study that would cause less sales of a $600/month product, and I’ll show you someone who is not in the Pharma industry today (and probably not even in a private company of any type). 

      Most medical studies today have their funds from one of two sources – Big Pharma (or those hoping to become Big Pharma), or Government sources.  Big Pharma’s studies are intended to push sales of a drug, never to find a way off of them.  If a drug is proved less effective than nothing, then it is rejected for sale in the US.  I’d love to hear about any comparative studies that were funded by private drug companies proving a natural or non-drug method was better.  I’m not expecting to find any though – those get swept under the rug for the sake of profit.

      The other place study funds come from is government – and that is under heavy attack in the US as budgets are slashed at every level in the country.

      I’d expect that these kinds of study could really have an impact on medical costs  ($20 a month plus diet change, instead of $600+/mo in pills multiplied by number of suffers is a huge number).  But the entire industry is lined up against it as that’s where they get their profits, and they have everyone from doctors to congress in their pockets.

    • [Guest]

      Research studies are amazing tools, but I would guess that measuring diet presents some unique methodological problems. For example, in a long-term study, how could researchers be sure what people are actually eating? Do you ask people to journal their food consumption? (and do you throw out subjects that fail to journal?).  Would you ask people to recall past practices? (which causes huge biases…don’t have the article right on hand).

      Medication noncompliance (missing doses/taking them late/incorrect administration, etc) is a well-known issue, but at the very least it is easy to measure compliance (a pill is a discrete object).  In contrast, we don’t always have control of our own diets–food served by others and confusing food labels make recording our diets more complicated.  And the longer the study, the more difficult it would be to assure compliance

      Moreover, the big research $$$ come from pharma/biotech/device-makers, who would not be interested in dietary changes (since they can’t really charge for a diet plan).  Plus chronic diseases are super-lucrative for the industry, since customers are locked in for the long term.

      So, while I doubt there’s an evil cabal blocking diet studies, if you’re a doctor or researcher who is interested in treating these kinds of digestive illnesses/Crohn’s, it’s way easier to study the efficacy of a drug than it is to do a long-term study of diets (which, due to the heterogeneity of these diseases, might not produce any dramatic results).

• [Xibu]

  Just who would fund double-blind studies based on nutritional approaches? I am a scientist. I also know that money talks, and you won’t get any double-blind studies unless somebody stands to make some money at the end of the process. 

  • [M D]

    Organic food growers association? Whole Foods?  Some Farmer’s Association?  Insurance companies that DON’T want to pay $600 / month?

    It seems to me that getting grass-roots type funding for a double-blind study should be Roberts goal and a documentary is actually a good way to start raising awareness. 

    • [Xibu]

      If the general public good was more important than lobbyists’ clients and local constituents, funding would come from the federal government. As to the other possible funders you suggested, you’ve got to ask yourself how much additional revenue would they generate, would it make funding the study worthwhile to them? Particularly when you consider all the various parameters you can play with and control for when you go for nutrional approaches to health care.

  • [Elisa Gabbert]

    Forget the funding part — how would one accomplish a “double-blind” study with diet even in the abstract? It’s easy to do double-blind studies with pharmaceuticals because pills all look basically the same, whether they’re placebo or the drug in question. Not so with food. Everyone would know what they were eating.

    “Double-blind” studies were designed to test pharmaceuticals, not lifestyles.

• [Jordan Pez]

  Firstly, people who say “his diet was terrible, of course changing it helped” don’t know what a gastrointestinal disease is.  It’s not like he just has a stomach-ache every once in a while, or his stomach just sometimes hurts.  Eating anything results in severe abdominal pain and diarrhea.  Not over the long term and not once or twice a week, but every single time, multiple times a day.  For anyone who has experienced food poisoning you can imagine that after every time you eat.  And that weakness from lack of food…  yeah, that too.  And not like a lactose intolerance where once it’s over it’s over.  The pain and nausea are continuous.  As in, all the time.

  Secondly, there really is no cure for Chrohn’s, even the Medical community admits it.  So why are people saying this a Pharma-bashing book?

  Thirdly, if this were a placebo effect that would be awesome.  You can imagine how awesome it would be to not be sick, even once, when every time you have eaten you have felt like you want to die.  So if it just takes a change of diet to fix something so horrible, well then at least something worked.

  Fourthly, he is not cured.  He is treating.  If he eats something bad the pain will come back.  And it is not simple to avoid it.  So why would someone go through so much work for nothing?  And why do you, oh self-centered commenters who lack any semblance of empathy, care?

  And lastly, it has been put forth that a Gluten Free diet is also beneficial for Chrohn’s sufferers, and this diet sounds partially gluten free.  Now I’m sure this will just make people bash gluten free, but to them I say… just feel blessed that you get to eat whatever you want, and don’t be a jerk to people who don’t have the luxury that you do.

  Being so sick that you’d rather not eat is not fun, and I wouldn’t wish it upon my worst enemy.  So any diet that aids people who basically are allergic to food is helpful advice.

  • [Dennis]

    @google-db6d256fbc6fc6f819c76a7e68ade61a:disqus - so diet never has anything to do with it?  Filling a Prius with diesel fuel (or jet fuel) would never cause any engine malfunctions?  I’m not saying it’s the lone cause, but starting with the “garbage in, garbage out” principle is always a good idea.

  • [kjs3]

    First, fact-free appeal to sympathy.  Tone set.

    Second, we know.

    Third, if placebo gives him relief, good for him.  Just don’t go make a video claiming this is the answer to Crohn’s, dismissing any science that doesn’t confirm that, and imply that this doctors are involved in a conspiracy to suppress the “truth”.  All the while, by his own admission lying to his doctors about his treatment and eating garbage.

    Fourth, we know.  And people go to this much and FAR more all the time to “prove” that their personal miracle is the answer for everyone.  Some have built whole industries around scamming people with fake cures.  And, lo!  Seth is pushing a book.  Imagine that.  We have empathy for the people who are led astray by this sort of thing, who replace or delay an evidence-based treatment chasing the promise of “miracles”.  Maybe consider those people when you feel the need to lecture.

    Lastly, a lot of things have been “put forward”.  Gluten free isn’t special there.  Science cares about provably and repeatably working.  Not the cure du jour.  Pointing that out, and supplying evidence to back it up, doesn’t make us “jerks”, unless you’ve redefined that word as “people who don’t support my self-delusions”.

    So how about this, learn about things like Experimenter’s Bias, read the Bad Science and Quackwatch blogs for a bit, then go look up “self-centered commentator”, reread your post, and ponder for a bit.

• [HowieFeltersnatch]

  “He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa
  John’s pizza, Mountain Dew soda, potato chips, gummy bears, and so on.”

  And he wonders why he has the liquishits? Facepalm.

  • [freshacconci]

    No, he has Crohn’s. Yeah, that’s a horrible diet, but that’s not the reason he has Crohn’s.

    • [kjs3]

      And?  I haven’t seen anyone claim diet causes Crohn’s, but it’s pretty clear that diet effects how bad it manifests.

      • [freshacconci]

        Read his comment again.

        • [kjs3]

          Who is “his”?  If you mean Seth, then I’m sorry and completely wrong.  I thought you were referring to the folks refuting him.

• [korper]

  I was diagnosed with IBS years ago, & the lack of curiosity regarding the cause from every doctor I talked to was pretty appalling.  Turns out there was a cause — a very specific combination of food allergies discovered by a naturopathic doctor — & changing my diet made all the difference in the world.  For whatever reason, conventional medicine (in this country, at least) is complacent about, even hostile toward, the notion that many medical problems can be improved by a change of diet.  Sounds like this guy had an absurdly crummy diet beforehand, so he’s not the ideal test subject, but that doesn’t mean he’s not onto something….

• [Alvis]

  Funny, it looks like it’s written  “Reid saw a naturopath”, but I can’t help but read it as an EOF character.

• [delt664]

  For people with Chron’s disease or similar symptoms, diet is an avenue worth exploring even without hard evidence supporting this treatment.  

  My brother and I both have Chron’s, his is moderate to severe, mine is more mild.  We have both dramatically reduced symptoms through diet control, carbs specifically.   
  In my case, this was an unexpected benefit from trying out the Slow Carb Diet.  I noticed a change within a week, and will probably continue it for the rest of my life.

• [Michael Johnson]

  Removing wheat from my diet, and my daughters’ diet, allowed us to quit buying $300/tube immunosuppressant ointments (Protopic).  The Doc was awesome about it, however, “hey, could this be diet related?” “It is possible”  “How do we find out?” “Pick something from the list of standard stuff and quit eating it for a few weeks, then start eating it again and see what happens”
  Wheat. bang. fixed.  Six months later I hear stories going back several generations about wheat “Great Grandma had to cover her face with a towel to make bread”…

• [Hyman Rosen]

  One reason we want Science involved is that there may be many people who have tried a diet for these conditions and it hasn’t worked; those people wouldn’t be featured on boingboing and they wouldn’t be making documentaries. Science separates what is true from what we wish is true.

• [Eric Bnope]

  Show me a randomized double-blind study that shows this diet works better than placebo.
  Both facts (no mention by doctor, no study) have the same explanation:
  The medical system is not purely devoted to helping sick people get better. Great ideas aren’t always tested or even noticed.

  There’s a LOT of money in gluten-free foods. It would take a tiny fraction of their marketing budget for any of those companies to investigate this.

  • [SamTheButcher]

    It would also take a tiny fraction of the profits of a company that makes Rowasa or Flagyl or Remicade to investigate – if they were truly interested in helping the people who took their drugs. But they’re not.

  • [Guest]

    A study about gluten-free diets could reveal that they are helpful only in limited cases, which could then limit the advertising/potential market for gluten-free foods.  Plus, if these are very heterogeneous diseases (in terms of symptoms and causes), it’s more likely that the results of such a study would be somewhat muddled (producing a less compelling/non-significant result).

    (I’m thinking of research on Fragile X mental retardation here — genetic studies have shown that similar symptoms can be caused by a wide array of different genetic abnormalities. Thus, a treatment that helps only a subset of the group could show no results in a study of the larger group.  The picture gets even more complicated when environmental factors are also taken into account…)

• [nein09]

  If the treatment for celiac disease worked for this guy, maybe the problem is that he has celiac disease. Why isn’t he or anyone else questioning the Crohn’s diagnosis? 

  • [tin robot]

    Pretty much exactly what I was going to post.  Rather than assuming that all of medical knowledge is wrong, isn’t sensible to start with the supposition that perhaps this individual practitioner (who is hardly painted in glowing terms) may have made a mis-diagnosis?

  • [SamTheButcher]

    Because the diagnosis was Crohn’s, not celiac. They have different pathologies, but can have similar symptoms.

    • [blueelm]

      Why do you blindly trust the western diagnosis though?

• [fearuncertaintydoubt]

  My wife has Crohn’s disease.  For years she tried treating it with various medications, supplements, etc.  I remember Pentasa gave her terrible headaches.  There were a couple of different steroids, low-dose naltrexone.  She even considered taking pig whipworm and some strong antibiotic regimens.  We went through a lot of bogus medicine and really had to essentially conduct experiments on her; if it didn’t show results, we tried the next thing.

  After almost 20 years of suffering, she used an elimination diet to pick off the exact foods that were causing the problem.  Turns out she is sensitive to wheat and soy.  When she didn’t eat them, her symptoms disappeared.  When she ate either of them again, they returned.  She has been virtually symptom free for 2 years now.

  I don’t think diet will cure all Crohn’s patients.  My personal theory is that IBD (Crohn’s and UC) have a variety of causes, and that’s why specific treatments work for some and not others.  I think that many (though not all) people have diet-controllable IBD and everyone with it should make a sincere effort with an elimination diet, because it could be the best thing that ever happened to them, certainly better than meds (some of the biologics like Remicade have killed people) or surgery.  You don’t have to stop taking medication—just add the diet and if your symptoms go away, talk to your doctor about tapering down the meds.

  Would I say that “diet can cure Crohn’s”?  It’s a little of a too-vague way to put it.  I would say that identifying and eliminating specific foods can improve symptoms for some people with IBD, and in some cases, essentially put them into remission.

• [blueelm]

  Hmmm… While I’m no anti-medical “skeptic” I do find it disturbing that none of his doctors thought he should change his diet to help deal with a digestive problem. Honestly, it makes me suspicious of the diagnosis itself. I know some one who has had pancreatitis twice but refuses to change her diet despite the painful hospital stays. So I do think the idea you can, as a person with a chronic disease, just take some pills and then do whatever problematic. Then again, you’d almost *expect* people to steer clear of food that makes them feel worse.

• [bokonon]

  My best friend has Crohns, Ulcerative Colitis, and a genetic liver problem that is incurable. In high school, they diagnosed him with Crohn’s, the other diseases were either not diagnosed or occured as a snowballing effect as his GI tract worsened. Diets and drugs never worked 100%, though he does feel diet helped him lessen the symptoms to an extent. The cost of the diet and the time it takes to prepare your food while working multiple jobs in your 20s kept him from keeping his diet perfect.
   
  I get the feeling from his experiences that there’s still a lot of guesswork on the medical side as to what works/doesn’t work with these ailments. The lack of a double-blind study shouldn’t prevent someone from trying something themselves.
   
  Having seen someone live with Crohn’s, anything that might help is worth trying.
   
  “in school i did not sh*t my pants much, why start now with this stuff? and man, i do not bluff”
  -song:  ”By Torpedo or Crohn’s” artist: Why?

• [nein09]

  Thank you. Someone close to me has IBD, and he has a lot to say about how tricky gut conditions are to diagnose properly. It wouldn’t be the first time that someone got it wrong.

• [Stephen Linhart]

  This is NOT like the anti-vaccination nonsense.  The anti-vaccination nonsense has been proven false.  The alleged value of this diet for treating some people diagnosed with Crohn’s disease has not been studied.  That is not surprising since studies are expensive and there is no profit to be made by studying this diet.  Further this diet has the advantage that it does no harm and an individual can try it themselves to see if it helps them.  That makes it quite different from the anti-vaccination nonsense.

  • [Liz Ditz]

    Stephen, the follow-on to “vaccines cause autism” is the way parents, under the advice of such experts as homeopaths and chiropractors, are experimenting on their “vaccine-injured” children to “heal” the injury.  The Geiers used chemical castration; Boyd Hayley sold an industrial cleansing product as an oral chelator….the list goes on and on.  

• [AirPillo]

  He threw out almost all his food. He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa John’s pizza, Mountain Dew soda, potato chips, gummy bears, and so on.

  With a diet like that even a perfectly healthy person would start to feel a little bit ill.

• [ryuthrowsstuff]

  The woo-factor of this guest blogger is remarkably high by bb standards. Swing by his blog, the omega-3 in his flax oil mysteriously losing “potency”, global warming denial, fermented wonder foods, miraculous claims about omega-3′s and flax seed oil in general, boiler plate support of CAM against the sinister medical “industry”. Hell the guy is most famous for writing a pseudoscience based fad diet book.

  Frankly it seems Mr. Roberts is exactly the sort of dangerous anti-scientific wonk that most of the editors here (and many of the sites BB is closely associated with) spend a good deal of time debunking and campaigning against. While its rather interesting and egalitarian to have the guy writing here to do so without comment or debate is a more than a little disappointing.

  • [Mark_Frauenfelder]

    “The woo-factor of this guest blogger is remarkably high by bb standards.”

    You don’t know me very well, do you? Are you new to Boing Boing?

    • [Paul Renault]

      So sic Ben Goldachre on the case. 
      http://www.badscience.net/

    • [kjs3]

      Well I’m certainly not new.  And I’m very familiar with you.  And I’m pretty much with ryuthrowsstuff.  How did this nonsense pass muster?

      - At best anecdotal evidence.
      - Self documented anti-medicine and anti-science advocate.
      - Clear philosophical and financial agenda.
      - Expected conspiracy adherent (medical indifference, Big Pharma, etc.)

      With respect, did anyone go past “He designs games!  That’s cool!” when they vetted this rubbish out?

      • [ryuthrowsstuff]

        I think you’re being a bit harsh here, I myself am more in the “I’m very disappointed with you son” mind frame. Its just that in 0ver 10 years of reading BB, I’ve never seen this sort of post presented uncritically without comment or context. The byline reads:

        “Seth Roberts is the author of The Shangri-La Diet and posts at Seth’s Blog about personal science, self-experimentation, and the scientific method.”

        Doesn’t mention that Roberts is a psychologist (a Professor apparently so teaching/research). And his blog seems to be at least as much about Alternative Medicine, climate change denial, anti-science topics, and promoting himself as an expert in the CAM mold as it is about  “personal science, self-experimentation, and the scientific method.”The post it self is boiler plate alternative medicine stuff, you can find identical stuff on thousands the sites of thousands of “Doctors” (legit or otherwise), message boards, morning news talk shows, and episodes of Oprah. One of the primary reasons I read BB is because their handling of science (regardless of how bizarre) is a much higher than standard. So this post was pretty depressing to see, given the presentation.

      • [Bryan Castañeda]

        Uhhh, the “nonsense” passed muster b/c it WORKED. Did you notice that? Did you notice how it WOKRED and cured him of a highly embarrassing, debilitating disease? Maybe you missed that part of the story.

        Oh, and did you notice how the same treatment WORKED for a lot of other people? Not everyone, but many others?

        So, yeah, there’s that.

      • [Mark_Frauenfelder]

        Do you always reject advice from someone who has learned something from experience, and instead wait for the double-blind study to tell you to what to do?

        • [Nutrition Industry]

          It depends on how experience leads to informed actions and decisions.  I listen very carefully to my neighbor’s advice on how to build a bookshelf because he is very experienced in making furniture.  As you can see from this comment thread, some diet changes work for some Crohn’s patients and not for others.  Thus, these individual experiences cannot be extrapolated to the larger population beyond the current medical advice that diet manipulation might help some patients.  Where individual experience cannot be generalized, we rely on double-blind, placebo controlled trials that are designed to be generalized to a wider population.

        • [Mark_Frauenfelder]

          Thanks, Nutrition Industry. I’m curious, do you think Reid should switch back to taking his prescribed medicine and wait for a double-blind placebo controlled trial before going on the Specific Carbohydrate Diet again?

        • [Nutrition Industry]

          Reid’s individual experience with diet changes worked for him – no need for him to change.  There is no extrapolation or generalization needed with n=1.  When he suggests that other people try his diet, then we can question the basis of extrapolating his experience to others.  Which kind of information would you trust more in managing your disease: a testimonial or a double-blind trial?  Also, there is a lot more to take into consideration than just clinical trials (http://en.wikipedia.org/wiki/Bradford-Hill_criteria).

        • [Mark_Frauenfelder]

          Should Reid have kept silent about what he learned?

        • [Nutrition Industry]

          Reid is certainly welcome to share his testimonial anytime and anywhere he likes.  Expert medical advice for Crohn’s patients includes, “No special diet has been proven effective for preventing or treating Crohn’s disease, but it is very important that people who have Crohn’s disease follow a nutritious diet and avoid any foods that seem to worsen symptoms (http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/).”  Reid did exactly this – adjusted his diet to manage his symptoms.

          But, he has gone from a personal testimonial to a promotion of a trademarked diet and a book that have very limited scientific support.  The SCDtm website linked in the article states that the supporting scientific evidence is anecdotal (and the plural of anecdote is not “data”).  His condemnation of the medical system seems more personal experience rather than derived from systematic evidence.  So, when he is telling people to stop trusting their doctor but trust a largely untested diet (or other untested “cures” in the video), he might harm someone who listens to him.  As we see from the commentors here, taking his advice and stopping their medicine would be bad for some and eating the SCDtm diet would be bad for others.  He has crossed over into giving medical advice.

          So, I don’t see anything wrong with Reid saying “I tried the SCDtm diet, and it worked for me.”  I am concerned that saying, “Medicine doesn’t work, you should try the SCDtm diet” may mislead or harm his fellow patients.  It is difficult enough to manage the symptoms of Crohn’s disease especially knowing there is no cure.  It makes some people desperate to try anything that might help.  Before anti-retroviral drugs were developed, people with HIV/AIDS were similarly desperate, and there are many things they tried that harmed more than helped.  We learned most of that in hindsight.  But, I am glad that SCDtm helped Reid.

        • [Reid Kimball]

          Nutrition Industry, you are mischaracterizing my views without knowing what I stand for. I don’t tell people to stop taking their meds. I myself went 3 years of little if any symptoms before I stopped mine and I did it in a very slow, gradual and safe way, despite not needing too from a physiological point.

          My message is that when something doesn’t work, look for other solutions. If a patient has a doctor they like and their meds are working and they are happy to continue using them, I will never tell them to stop seeing their doctor. That’s not my purpose. I’m making the film to help those who are looking for other options. The use of effective alternative treatments grows each year but not enough research is being done. The next best thing is to experiment with them on me and talk to as many people as I can about their experiences.

        • [Susan Carley Oliver]

           I think there is a lot of conflation among what Seth Roberts is saying, what Reid Kimball is saying, and what the producers of the film are saying/will say.  When I read Nutrition Industry’s post it seems to clearly state when s/he is referring to Reid, but leaves the other attributions vague, which seems appropriate given the post, which I found to be not well written. Again – I feel that better editing would have served the BB community well here.

        • [Nutrition Industry]

          My apologies if I blended some of your views with those of Seth Roberts.  I found it difficult to parse out your viewpoints from his in the blog post.

          I re-viewed the documentary clip (which I assume reflect solely your views), and your choice of video clips and their editing cast the medical approaches to Crohn’s management in a rather negative light (Accutane? Highlighting “no cure”?).  I interpreted that as urging patients not to trust medicine because that is how it struck me.  Perhaps you meant a different message to come across.

          I can understand that you are frustrated (I certainly can’t begin to understand your frustration though as I do not have that disease).  Medical science has failed you by not curing your disease.  But your documentary clip speaks of a “cure” while presenting testimonials for treatments that may only work for some but not others.  Clinical studies actually test how effective a treatment is for a wide range of patients, i.e. what are the odds I will benefit from this treatment (unfortunately, they aren’t that high for most Crohn’s treatments).  A testimonial gives you no idea of the chance a treatment will work for you.

          A cure has not emerged from medical science nor the alternative treatment approach – only palliative care.  You are communicating a message about a cure and associating it with testimonials about alternative treatments to a population of patients where some feel hopeless.  I feel this may encourage vulnerable people to try a “cure” that may not work for them (and has potential to harm them) instead of their current regime that only controls their symptoms.  “Alternative” doesn’t mean better, it only means different.

          I am glad the SCDtm diet worked for you.  It is great that you are sharing your personal experience.  I imagine you want to make a powerful impact on as many people as possible with your documentary.  Your messages of hope and help will be far stronger than any (inadvertant?) messages of distrust medicine and expect a cure from alternative treatments.  Best of luck!

• [bokonon]

  i’m always amazed at the lack of dietary training most doctors seem to present. we don’t have a very interconnected view of our body systems sometimes, and the doctors we see frequently only spout their speciality. surgeons generally want to cut, etc.
  when your toolkit is a hammer, everything is a nail.

  that said, i’m sure just not drinking Dew was helpful to his stomach, no ailments needed.

• [Peter Ellis]

  Sounds like he was misdiagnosed and actually had coeliac disease all along.  Has he got himself tested?  It should be simple enough.

• [ryuthrowsstuff]

  Oh and Seth Roberts is a Psychologist not a medical doctor.

• [blueelm]

  I don’t see what is surprising here though. Phrasing this as “This diet cures Crohn’s” would seem silly, but “junk food exacerbates Crohn’s” doesn’t seem unlikely. Also, how does some one live that long without knowing yogurt!?

• [raikou]

  people with crohn’s disease have to be very careful about what they eat, as most healthy (like fruits, veggies and whole grain bread) foods have a ton of fiber in them which irritates sensitive intestines. They can eat vegetables if they are boiled to all hell but that’s not an appetizing option at all.My boyfriend has crohn’s and the only unboiled veggies he can eat are potatoes and onions. He subsists off or what most people would consider junk food, but it actually isn’t as bad as one would think. Since crohn’s is also a malabsorbtion problem, he doesn’t absorb nearly as much fat from the foods he eats as a normal person.

  I’m wary of recommending this diet to him because “vegetable stir fry” would probablly send my boyfriend to the hospital.  Yogurt seems doable for him though. 

  I hate to be overly skeptical, especially since this person seems to have had this diet work for him, but that’s just it, it was a personal experience. It may not work for everyone. I also don’t think that most doctors are corporate tools that want to keep people unhealthy for the sake of business.  Health care professionals want their patients to get better. Usually if a patient tells a doctor “oh hey, I found something that really helps with XYZ problem…” the doctor will (or should) respond with “that’s great, but you should proceed with caution and let me know if anything changes”.  This is what my boyfriend (who is also a nurse) was taught to do.

  I may recommend my boyfriend look into this diet though, he would know better than anyone if it would work for him and what risks would be involved, since he has an extensive knowledge of the disease and knows what foods he can and can’t feasibly eat.
  I don’t completely disregard alternative treatments, but they don’t always work for everyone and  they require a great deal of caution and research on the part of the patient, so they can access risk/benefit.

• [Mike Husted]

  His diet sounds very similar to paleo/primal.  Check the forums at marksdailyapple.com and you’ll find a bunch of people that have had success cutting out grains, sugar and processed crap from their diet.  It sucks that their recommended diet runs completely opposite  what actually works.

  “Heart-healthy” grains and HFCS/sugar are responsible for fat and sick people.

• [Andy III]

  I can attest first hand to the effectiveness of ‘Breaking The Vicious Cycle’.

  About five years ago, I had Crohn’s sister disease, Ulcerative Colitis. I came very very close to dying from blood loss, and spent a good chunk of time in the hospital. The second time I was in the hospital it was while taking the battery of drugs that I feel were making me worse. I had a SEVERE reaction to the steroid Prednisone and was pointed out by a doctor while in the hospital that I’d probably get worse (read: die) since I wasn’t doing what they said. The Prednisone made me suicidal within 24 hours of taking it…I’m no doctor, but I would think that this would be what’s called an ‘adverse reaction’.

  I went home and read this book and immediately began following it’s advice. I quickly began getting better and today am completely symptom free. Frankly, I think I owe my life to that book.

• [LintMan]

  I’m glad the change of diet worked for him, but I have  aproblem with him drawing conclusions about the entire medical establishment based on 1-2 doctors, especially when he wasn’t entirely straightforward with them.
   
  - First of all, he never told the first doctor that the Pentasa didn’t work!  Why not?   The doctor did a poor job of following up, but many doctors work on the “squeaky wheel” principle, so if you have not complaints (ie: you say you’re doing better), they’re not going to persue it very far.
   
  - Second, most of the doctors you see for treatment aren’t researchers and aren’t going to run off and do a study or start telling other patients to change their diets based on this one guy’s experience.
   
  - Is it possible he didn’t have Crohn’s disease, but some other malady that only looked like Crohn’s?  Could the whole problem here might be that he was misdiagnosed?   Is the only determinant the MRI scan?  Perhaps if Seth was more direct that the medicines weren’t helping, and took the time to seek some other doctors’ opinions, he might have found someone more responsive  to his needs.

  • [Antinous / Moderator]

    Perhaps if Seth was more direct that the medicines weren’t helping, and took the time to seek some other doctors’ opinions, he might have found someone more responsive to his needs.

    Are you paying for all this?  Assuming that he has insurance, he probably has a limited choice of physicians and is dependent on referrals.  If he doesn’t, it’s out of pocket.  And he has to take time off life to chase around hoping to find a physician that has a solution.

    You seem quite determined to prosecute the patient in order to fully exculpate the medical industry.

    • [blueelm]

      To me it is not so much about blaming him as being realistic about doctors. And yeah, if the drug wasn’t working that’s six hundred a month to save up to try another doctor. Yes, out of pocket even. Why? Because not all doctors are good at much.

    • [LintMan]

      Prosecute the patient?  Hardly.  And I’m not  a shill for the med industry, either. 

      He had at least two doctors that don’t seem to have had the level of concern they should have and that he was clearly unsatisfied with.  (And from Bucket’s post above saying the  Crohn’s Foundation said diet CAN help, it seems the doctors were not very up to date, either)
       
      I have  a chronic disease myself and have to deal with the same types of insurance issues you mention.  If his doctor isn’t responsive, he needs to switch, period.   Limited choice != no choice.  Yeah, he probably couldn’t shop a dozen doctors at a time, but over the years of recurring visits I’m sure he would have had at least some chances to make changes.   (And even if he had no insurance, he was still paying to see *someone* regularly, either way, new doctor or not.)  But the only change he mentions is when he moved.

      But really that’s just a tertiary point of hindsight that if he was more proactive, he might perhaps have found his solution sooner.    My real issue is that *He lied to his doctor about how he was doing*, letting the doctor think the medicine was working when it wasn’t.   Then, this is used to show that doctors only want to push medicines on their patients.  Hello – if you tell them the medicine is working, they will keep giving it to you to take.

      Like Rob Beschizza ‘s post, this seems to me to be more about a few incompetent doctors than some sort of expose of the medical system.

    • [crashnbash]

      If you are not your own advocate of your health no one else is going to be and you can’t blame anyone else for your lack of persistence.. this being said by a Colitis patient. If I don’t tell my doctor im still crapping blood when he put me on a treatment, guess what im still going to crap blood and get worse beacause I told him nothing was wrong. Regardless you need to tell them everything that’s going on, even if they blow it off, you make it a big deal. I’m lucky enough that the 3rd GI I went to in my 6years is a real winner and is amazing. I dealt with the same SOB for the first 4 years and it was my own fault because I didn’t stick up for myself and my health.

  • [666beast1]

    When I was thought to have Lupus (I do not) by a Rheumatologist and was treated with the currently recommended drug for 6 months I was asked by the doctor if I felt better.  I said I did not and without skipping a beat he said “Yes you do.”  That was the last time I saw him and to me is the current state of our insurance based system.
    From seeing not one but 6 or 8 doctors I think we barely have a “medical” system any longer, we have an insurance system.
    Satire, but true:
    http://www.theonion.com/articles/patient-referred-to-physician-who-specializes-in-g,21255/

• [Bucket]

  Shenanigans! I call Shenanigans!

  From the article above:
  

  “According to the Crohn’s and Colitis Foundation of America, “there is no evidence that any particular foods cause or contribute to Crohn’s disease.”

  The full quote from the link:
  

  There is no evidence that any particular foods cause or contribute to Crohn’s disease or other types of IBD. Once the disease has developed, however, paying special attention to diet may help reduce symptoms, replace lost nutrients, and promote healing.

  • [crashnbash]

    Thank you for calling out the shenanigans! I found it very odd myself to see how he quoted CCFA.

• [Christopher Locke]

  I think a lot of people are missing the point of this article.  It’s not whether or not the Mountain Dew and microwave dinners give you the shits.  It’s this:  Once the guy found a diet that worked *for him* his doctors (MULTIPLE DOCTORS) showed no interest in what worked for him.  They only showed interest in prescribing meds that didn’t really work.  Then, presumably, when the next patient shows up and asks about changing his diet, the doc will say “just take the meds.”

  It’s true that this diet will probably not work for everybody.  But if I was a doctor, and my job was to make sick people well, it may help me do my job to have ALL of the information I can get my hands on, including dietary changes and anecdotal evidence.

  Imagine you have a car that makes a funny rattling noise.  You take it to a mechanic, and his solution is to give you a bottle of rubbing alcohol every time you fill up the tank with gas.  Just add the alcohol to the tank of gas and you’ll be fine.  You do it, and the car still rattles. You go back, and he insists that you just need to add the alcohol to the gasoline.

  Now, your friend tells you an anecdote.  His uncle had the same car, and there was a heat shield on the catalytic converter that was held in place by one rivet.  The rivet worked its way loose and the heat shield began to rattle.  So he put a screw where the rivet was, and it no longer rattles.

  It’s true that not *every* rattle is caused by this rivet, and can be solved by the same screw in the same place.  But if enough people check that heat shield for the same problem, and enough of them find success with the same solution, wouldn’t you think it’s something your mechanic might want to know about?

  • [Walter Dexter]

    His story is absolutely not proof of anything. However, the most distressing part of this story is the total lack of interest – and, indeed, dismissive reaction – shown by the doctors in his success.

    My general rule of thumb, though, is to not assign to malice that which can be assigned to incompetence.

  • [kjs3]

    I certainly didn’t miss that.  He admits to lying to the doctors about his treatment, I don’t think seeing 2 doctors that didn’t give him satisfaction warrants a capital letter MULTIPLE, and he’s pushing a book “proving” his conclusions.  Perhaps a better explanation is the doctors preferred an accepted treatment that HE SAID WAS WORKING to Yet Another fad diet solution (something they’ve undoubtedly heard before) and now he’s conveniently bolstering his financial fortunes by appealing to the biases of people already wary of the health care system?  Just a thought.
     

• [Christian Ellis]

  Having dealt with many doctors for cancer and Lyme disease  I can tell you for sure; 
  most, almost all, doctors are not up to date in their own field,
  they don’t attend required CDC training,
  they will blindly push drugs at you like there’s no tomorrow,
  they will ignore or scoff at anything natural or dietary as a treatment,
  they are right about half the time,
  surgeons are weird.

  What has saved my life;
  Trust your instincts,
  research, research, research,
  fire every doctor you don’t trust, or laughs at you, or won’t listen.
  There are good doctors out there so don’t settle. 

• [emptyh]

  My wife had similar symptoms and had much the same experience in that doctors were not interested in talking to her about symptoms and what can be done.  They all ran tests for celiac, wanted to do colonoscopies to check for Chrohns, prescribed drugs, ran other tests and when they all came back negative, they just said “You’ve got IBS” as if that were the end of the conversation.  No interest in looking any further.  She did her own elimination diet and found that fructose seemed to cause problems (half of a sprite caused her bowels to completely empty in a matter of minutes).  By spending hours online, she discovered a condition called fructose malabsorption and asked to have a hydrogen breath test.  The doctor at a highly regarded gastroentrology clinic was dismissive of her elimination diet and literally rolled his eyes when she asked for the hydrogen breath test, but ordered it anyway.  Turned out that was her problem.  They offered to set her up with a nutritionist who said she didn’t know anything about that condition.  More research online led her to the low FODMAP diet pretty, which much eliminated her symptoms. 

  She had a similar experience with endocrinologists to help with managing her Hashimoto’s thryoiditis.  After a decade of being on synthroid, she didn’t feel right any more.  The doctor was willing to prescribe Armour (pig thyroid) but monitored her TSH levels and when they were in the “normal” range, declared that she was well, despite still having a lot of quality of life robbing symptoms.  She finally found a doctor that was willing to treat based on symptoms rather than strict adherence to the TSH lab tests and finally found a combination of medications that are working well (synthroid and cytomel).

  My takeaway from this is what many above have said:  too many doctors often just don’t care to spend the time to get to know patients and continue working on problems.  Too many doctors declare “you have this” and send you on your way despite still not feeling well.

  My fear in this is that it causes people to get so frustrated that they end up losing faith in modern medicine entirely after being failed by the system and discover that simple things like diet changes worked to eliminate or significantly reduce their symptoms.  This leaves a lot of people susceptible to the quacks out there who promise results.  I wish more doctors would work with patients to do this type of self experimentation rather than move on to the next and less challenging patient.  

  My wife also works in health law and reads a lot of medical case files and has seen how policies get set in place at clinic systems.  So much of modern medicine is about reducing risk at the expense of patient care.  It’s a tough line to get right.

• [Matthew]

  If you solve it without medicine, then how do the drug companies get their $600 a month?

• [Mark Lamb]

  Crohn’s and UC and the similar diseases probably have a variety of different causes, that all come together in “your guts don’t work right” as the main symptom.  That would explain why so many people have found wildly different miracle cures that don’t seem to work for everybody.

  Doctors *should* be more interested in finding more effective treatments, but they’re got other problems and this is such a great disease for them: people don’t actually fall over dead immediately from it, but do suffer enough to spend all their disposable income looking for relief in many cases. There are other more critical and more profitable (in all senses) things for them to pursue.

  FWIW: Chicken breast and pork loin make up a large part of what I eat; no fiber I can avoid and no hot pepper at all. Ginger seems to be helpful sometimes. Its not a “life changing diet cure!” but enough anecdotes might eventually become data someday :)

• [Hugh D’Andrade]

  I tried this diet about 10 years ago. It helped, but I was hungry ALL the time. And the hunger would hit suddenly, probably a sugar low. On one occasion I had to run into a store, starving, and was unable to find a single thing that wasn’t banned by Gotschal’s diet. Except olives. I bought a jar of olives and started shoving them in mouth.

  Turns out my symptoms were better treated by a gluten-free diet.

• [Cynthia Bonville]

  Of folks I know with IBS sometimes just taking probiotics is effective enough to aid them, which comes to another issue which is Clostridium difficile common to many with digestive troubles and compounded by antibiotic use.   One treatment for C. diff. is a flora transplant (you know, gut bacteria?   Yeah that.), which is what probiotics essentially is.   Which brings up another issue, we don’t trade our bacteria well – for too long we have made a point of making newborns and the region from which they are born to clean, we know babies born from surgery have issues with proper bacterial inoculations as they emerge from the wrong part of the body of the mother.   And while I know we’re not elephants I also know elephant infants spend a great deal of time getting pooped on and playing with adult elephant poop.   Not that babies should play with poop, but perhaps we really do need to spend some time considering clean and clean and what that means to us and our bodies.  Heck, for another example, clean mice raised in a sterile environment are quite sickly, perhaps we are doing the same thing to ourselves with our over-processed foods and being removed from our food animals (which we used to co-bunk with at night and shovel their dung..)   Anyway, just a thought.

  As for celiac disease, well his GF diet merely feeds his flora and fauna in his colon, cultivating his microscopic garden and herds essentially.   I do not believe that IBS is celiac disease but I do believe their root cause are related.

• [PAPPP]

  There are plenty of woo-free remarks to consider here.  Things like “Don’t eat things that make you sick”,  ”Pay enough attention to your body to know when there is a problem”, and “Human variation applies to you.”  
  I have a fair number of food intolerences (in addition to some true immune-based allergies)  that would make me constantly miserable if I didn’t watch what I eat.  I keep the list updated when I see doctors, but beyond keeping notes so there isn’t a problem if I am ever hospitalized, the specifics of which foods bother me are only (medically speaking) statistically interesting , because the foods individuals have problems with vary wildly.  
  Most medical practitioners are scientifically literate enough not to equate “My body doesn’t tolerate this substance well” with “I’ve discovered a magical universal solution to GI issues,” so there is little reason for them to be closely interested in the specifics.   There is a strong, patient driven,  tendency toward seeking “give me a magic pill to fix my problem” solutions, so in my experience, if you self-monitor and self-regulate, GPs are usually just relieved not to have to try to treat your lifestyle. 

  • [Snig]

    I believe a gastroenterologist should know more than the average undergrad about diet.  The doctor should have talked about diet, even if it usually doesn’t help.  It strikes me as fairly insane not to say  ”Some people rarely report some symptomatic changes with changes in diet. Given how miserable this is making you, you might as well see if you’re one of the few that changes in diet help.  Start eating a simple diet of just a few of the healthier  foods that you normally eat, see if you feel any better.   If you feel better, keep that diet, and try introducing new foods in one at at time. If you don’t feel better, here’s a simple diet that you can see if you can stick to for a week, see if it helps at all”

    That would take about two minutes.  The doctor can make a handout on it.  Could change lives for the better.  And it is often not done. 

• [Nutrition Industry]

  Clinical studies on the relationship between diet and Crohn’s disease would be funded by the National Institute of Diabetes and Digestive and Kidney Diseases (http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/) – a government agency.  But, the Specific Carbohydrate Diet is trademarked by Food Rx, a 501(3)(c).  Maybe they could use some of their funding to support the validity of this approach.  Their own opinion about SCDtm is, “In summarizing the direct support for the SCD™, one could reasonably state that the anecdotal evidence is very strong, while significantly more work needs to be completed on the clinical research side to validate the diet’s effectiveness across a broad patient population.”

  My impression has been that several Boing Boing bloggers enjoy exposing lies and deceptions, e.g. Bradley Manning, TSA, Jon Stewart rebroadcasts, etc.  This man has mixed anecdotal experience (nothing wrong with a Crohn’s Disease patient trying out different dietary patterns) with deceptive comments on science and medicine with just a tiny hint of shill for a trademarked diet plan and book.  With all the high quality science reporting from Maggie, I was a bit surprised that BB would give this man a stage.  He seems more the type you folks would normally expose.

  • [ryuthrowsstuff]

    This is exactly why I was so disappointed on first reading this post. Even the wonkiest stuff we’ve seen here (I’m thinking specifically about that one guest post on microwaves causing crop circles) weren’t framed with the  science dismissive, selling you a miracle cure tones of the modern quack.

    If this same story were presented in almost any other way I don’t think nearly as many people would be taking it so badly.

• [MattF]

  I vote for misdiagnosis. One thing worth noting is that scientific studies will be careful to ensure that the study subjects really do have Crohn’s disease. It’s quite possible that 1) people who have the real disease aren’t helped by diet and 2) physicians won’t admit a misdiagnosis because of malpractice fears.

• [Jim Grinsfelder]

  Crohn’s is thought to be an autoimmune condition where the immune system attacks part of the bowel.

  If this thinking is correct, diet might alleviate symptoms, but the worm treatment might be a better solution IF the worms can cause the immune system to stop reacting incorrectly to otherwise healthy tissue. 

  http://en.wikipedia.org/wiki/Crohn%27s_disease

• [wingo shackleford]

  I recently had to deal with an extended bout of diverticulitis, a terribly nasty intestinal infection.  When I asked the doctors what caused it, they would always just kind of hem and haw, ‘well there are studies… but it’s difficult to say… could be lots of things…strawberry seeds?”, etc.

  When I would ask if I should significantly change my diet, the response was always a generic “sure, just try and eat healthy”, with a shrug. OK, then.  More often than not, they would just go on about quitting smoking, which is obviously good advice – but they would almost infer that this was the magic bullet to solving all health issues. Or else they would just draw me crude squiqqly intestine diagrams and smile vacantly.

  My point is that intestinal issues are awful, and diet *obviously* at least plays some role in the overall picture, possible a very central one. And doctors are lazy and don’t really address this issue head-on.  They do just tend to throw drugs/surgeries at you to see what sticks. Modern medicine is a strange thing.

  • [Antinous / Moderator]

    When I had a colonoscopy a couple of years ago, it showed diverticula.  The GI people said, “Eat lots of fruits and vegetables”, which is current advice.  When I mentioned it to my GP, he said, “Stay away from anything with seeds”, which is an old wives’ tale.  This isn’t exactly an obscure finding, but my GP is still ten years behind on the issue. 

    The trend to avoid costs by avoiding specialist referrals means that patients get a lot of worthless, outdated advice from GPs who cannot reasonably be expected to keep up on current thinking in every field of medicine.

• [notquitereal]

  Breaking the Vicious Cycle is snake oil pure and simple. Worse than that it’s pseudo science targeted at a vulnerable and desperate community of sufferers.

  I have UC – when you’re down, off your face on drugs and depressed, and you come across this website with just what you want to hear http://www.breakingtheviciouscycle.info/testimonies/testimonies.htm, you’ll do anything  it says. I’m quite upset that boingboing gave face time to this.

  Diet helped me lots (even though doctors are dismissive of it in lots of cases of IBD). But while a __qualified dietitian__ really helps (even if you go behind your doctor’s back), BtVC is a crappy substitute that happens to get lucky because it cuts out many common allergens (gluten, dairy…). 

• [confabularian]

  Filling in the ellipsis in the second paragraph paints the current advice from the NIH in a subtly different colour to that chosen by the author. The missing words are shown in squared brackets:

  “No special diet has been proven effective for preventing or treating
  Crohn’s disease [but it is very important that people who have Crohn’s
  disease follow a nutritious diet and avoid any foods that seem to worsen
  symptoms]. There are no consistent dietary rules to follow that will
  improve a person’s symptoms”
  http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/index.aspx#diet

  Brings the advice and the self experimentation that is bringing relief into accordance rather than conflict.

  Despite supposed industry conspiracies, recommendations relating to the benefit of dietary changes in digestive illnesses are being made based on what evidence is available. See the IBS guidance from NICE in the UK for example http://guidance.nice.org.uk/CG61.

• [Eric Tatro]

  I’ve got Crohn’s disease and have used diets similar to the Specific Carbohydrate Diet when my symptoms flare up. Day-to-day I eat a gluten free diet which has kept my symptoms under control.

  For anyone who’s interested, Rush University Medical Center in Chicago is doing a study of the SCD to determine whether it actually changes the makeup of microorganisms that inhabit the digestive tract. More info here: http://www.rush.edu/rumc/page-1298328953440.html

• [SamTheButcher]

  When I was young, like the guest poster, I trusted “medicine” because I equated it with “science”. There are a lot of other factors that I’ve learned about since then that are also mentioned here in the comments, like – doctors not having enough time to keep up on latest treatments; drug companies pushing their products; doctors not trusting anything that they haven’t learned, etc.

  I know to question authority, but somehow didn’t in that case. :)

• [shiftdelete]

  I have had a long history of similar IBD -type symptoms. Not as much as true Crohn’s.. but I could never figure out what it was. I thought for a long time that I was lactose intolerant, but I could drink regular milk with no problems. I narrowed it down to some ice cream, powdered chocolate drinks, milkshakes, frozen yogurt, and several other types of food. 

  The common ingredient was an evil little thickener called Carrageenan. It’s spelled many different ways, and sometimes called Agar Agar. After eliminating this from my diet, throwing lots of food products out, and reading labels carefully- (no ice cream except Haagen Dazs), I’ve been symptom-free.

  Despite the FDA labeling this as healthy, it can cause SERIOUS problems in people who cannot tolerate it– even cancer. It’s in just about everything, including Soy Milk, Baby Formula, and even toothpaste! Just another thing to make a note of.

  • [ryuthrowsstuff]

    Actually carrageenan and Agar Agar are 2 different substances, but both extracted from the same sources (red algaes and certain types of seaweed). Both are entirely natural and carageenan at least can be extracted simply by boiling the seaweed in question. Also carageenan has been used as a thickener/gelling agent in Asia and Northern Europe (specifically Ireland) for a couple of centuries.

    That said it makes sense that some people would have issues with the stuff. Algaes in general aren’t exactly friendly stuff. I myself have a scallop allergy.  Apparently the reason I’m not allergic to any other sea food has something to do with the algae scollops feed on or that actually live in the scallop.

• [jsnshrt]

  I went to a GI DR in SF and he had me on Anti UC drugs for two years with little help. The idea that GI Dr’s don’t tell you to alter you diet is complete bullshit. I got a list of things that would irritate me on the first visit. Take pro-biotics, avoid milk and fat, alcohol, etc. Do a google search for Christ’s sake. I think these patients are in denial, actually. I know I did not have my wits when I was sick.

  After 2+ years of treatment of steroids and Anti-UC drugs, my DR threw up his hands and said I can’t help you anymore, go see a nutritionist. Whatever. I eat better than 98% of the world who get along just fine. I went to a new DR who put me on Amitriptyline. Turns out I was having terrible nerves due to stress and my severe muscle/joint pain, fatigue and daily diarrhea went away within days. I could finally sleep at night as well. I knew about how complex the nervous system of the gut is, but I never really though that could be the issue. Everyone kept saying diet, but diet only did so much to relieve symptoms. 

  What I’m trying to say is it’s so damn complicated, you can’t just pick sides like a political debate. It doesn’t work that way.

• [shiftdelete]

  Another point worth mentioning:

  Crohn’s is a primarily a “first world” disease. The people who have it are highly concentrated in industrialized nations.

  What’s a huge difference between 1st and 3rd world nations? Diet! Processed Food, Fast Food, Frozen food, etc, etc.

  • [freshacconci]

    Really? There’s no other possible explanation for that? You’re just going to look at one statistical bit of data (unsourced) and jump to that conclusion?

  • [blueelm]

    If you consider how much other diseases can look like Crohn’s and how common they are in third world countries, I think you may find that this is a more complicated issue than you assume. 

• [Mister44]

  I’d like to echo being your own health advocate. I had an unnecessary back surgery because I was young and naive. It took 5 years of pain before anyone finally figured out WTF was wrong with me, and that I wasn’t faking it to score some oxycodone.

  ETA – the original issue with the apathetic doctors illustrates part of the problem with the healthcare system.

  1) Our doctors are spread thin.

  2) They have to see X number of people and don’t take the time they should.

  3) When it comes to something ethereal like IBS or Crohns, there is no cure and no clear course of action. So they write a script and hope they become someone elses’ problem.

• [Marja Erwin]

  I’m just looking at the introductory diet on that page.

  I have immense trouble after eating cheese or eggs. Not sure about gelatin. So basically, the breakfast would make me sick, the lunch would make me very sick, and the dinner would do variations on the above. I suspect I would end up throwing up soon after every meal.

  I figure everyone has unique dietary needs. And the introductory diet leaves no room for some quite common variations in those needs.

• [gilsonal]

  I have Crohn’s and I’ve had great success with the SCD.  Sure its healthy, and all the scornful comments above note that its probably better not to eat crap. But I would imagine their diets are full of crap that they couldn’t eat on SCD. Fancy things like corn. And flour, potatoes, any sugar that’s not glucose and all processed foods. You shop the dairy, meat and produce aisles of the grocery store.  I find it hard to believe that the people making the mocking comments above are all eating that well. 

  I would suggest to anybody with IBD to give it a shot. It is difficult and sugar withdrawal is no joke. However, this allowed me to be symptom free for the first time since before my diagnosis. Given that my medications (retail price more than 1,000 a month) can’t do that, it can be totally worth the sacrifice. It seems restrictive at first but gets easier. I’m not on it full time now because my student lifestyle doesn’t allow me the time necessary to live without processed foods, but you can bet that if my symptoms get worse I’m back on the train! 

• [pattie666]

  if western medicine is not working, why not try stuff that sound like woo?  If you only accept double blind studies, you could be missing out.  Not to just wail on Big Pharma (which I would happily do all day long), but if there’s no payoff, there’s not usually going to be testing.  So it necessarily is done by desperate individuals.

• [awjt]

  I think the upshot is that diet is something you can basically safely screw around with as much as you want without hurting yourself.  Granted, you could take that to an extreme.  But a special diet that works for you is a wonderful thing!  Don’t underestimate the power of life-hacking.  It can be a really good force.

  • [Cowicide]

    I think the upshot is that diet is something you can basically safely screw around with as much as you want without hurting yourself.

    I wouldn’t say “safely” if you have severe GI issues or severe allergies.  But I agree it’s relatively safer than say experimenting with tons of drugs and surgery when you’re still stabbing in the dark.

    • [awjt]

      I’m certain that you don’t think I’m suggesting people with peanut allergies start screwing around with peanuts…

      • [Cowicide]

        I’m certain that you don’t think I’m suggesting people with peanut allergies start screwing around with peanuts…

        No, not at all.  But certain unknown GI issues can be exacerbated by food and even call for an emergency room visit.  I’m just saying if someone has unknown GI issues to be careful what they eat.  Maybe try certain foods in moderation and see if it makes you a little bit sick, instead of chowing down and ending up with more severe pancreatitis or something. Of course, if you have known food allergies, no one would do that with any of those unless they had a death wish or are just plain crazy.

• [Phototropic]

  In addition to the placebo effect, consider regression to the mean as another explanation as to why fad diets such as this seem to improve symptoms.  People tend to try things like this when their symptoms are at their worst, so it’s no wonder that doing anything different at all (new meds, changind diet, aromatherapy, meditation etc) will seem to help them. 

• [gellfex]

  Another Crohn’s patient here.  Unfortunately this is a disease surrounded by a lot of dogma. My new GI says there is no cure, especially surgery. I say tell that to my sister clean for 37 years. I may actually be clean 25 years after surgery, and my symptoms are from diverticulitis,  strictures and IBS. We’ll see after a scheduled colonoscopy.  I’m in the “eat badly” camp. Healthy food can go right through me, but fried chicken & fried rice is fine. I once tried a carb free diet and it made me sick as dog.

  As for all the claims of misdiagnosis,  proper diagnosis involves x-rays, colonoscopy and microscopic study of a biopsy tissue sample. At least that’s how I was diagnosed and there’s little margin for major error. Did someone tell a patient with a bellyache & diarrhea they have Crohns? It’s possible. I have a friend who said he was diagnosed with diverticulitis by symptoms without any imaging at all. I guess there’s all kinds of doctors out there.

• [Marcella Mathewes]

  I just wanted to comment on this. My son is autistic and once he started solids foods he had constant diarrhea. It blistered and made him bleed. It was awful. I tried a gluten free and casein free diet and it did nothing. His ped and I suspected celiac but I wanted to try diet before scoping a 2yo. 

  Well I don’t recall how but I learned about the SCD but I did and started it almost right away. Within 5 days my son was a different child. Before that he didn’t respond to his name. He didn’t call us by mom or dad and he didn’t interact appropriately. On the 5th day of the diet he brought me a book and wanted me to read it to him. He started responding to my questions by pointing in the book. Before this point my son never pointed and he never asked for anything from me, not even food or drink. 

  I can’t really go into all the changes but he changed so much that he was just unrecognizable from the child before the diet. He’s still on the autism spectrum. But he’s healthy, happy, bright, extremely loving and affectionate.  He’s not even close to the withdrawn and in his own world child before the diet. Oh, and the diarrhea stopped on the 5th day of the diet. In the 8 years he’s been on this diet he’s only had diarrhea a handful of times and it was when he was sick with something. 

  Breaking The Vicious Cycle is hands down one of the best things that’s ever happened to us.  I don’t know where our family would be if we hadn’t found it and implemented it. I feel like I got to meet my son for the first time on the 5th day of that diet when he finally broke through the fog. 

• [meerhog]

  I was diagnosed with Crohn’s Disease 4 years ago. I have been taking Pentasa and Imuran ever since.  My Crohn’s hasn’t flared up again since.  What works for one patient, might not work for the next.  Every patient is unique.  My diet has stayed basically the same(no corn or nuts after after being diagnosed). 

• [Nadreck]

  My whole family has one form or another of IBD/Crohn’s.  My brother has been written up in many studies of Chrohn’s as an outlier called “Patient C”.  One of my sisters has had great success with diet after decades of useless drugs but my brother and I haven’t.  We have gone off the drugs anyway as they have no positive effects.  The problems is that everything under the umbrella of “guts don’t work good” get shovelled into these diagnosis and there are probably many people with identical symptoms who’s problems have entirely different cause and therefore cures.

  For example, no one has a clue as the causal agents of Crohn’s:  infection?  auto-immune problem?  viral?  sunspots?  Diagnosis and prognosis are entirely symptomatic with no theory behind them.  The only research is into the effects of different patented drugs because Big Pharma monopolises funding so what won’t make them rich won’t be investigated.  So it’s fine to talk about how double-blind tests of diet  would be better but so would an end to the War on Some People Who Use Some Drugs and I don’ see either happening within my lifetime.  So those of us who have these conditions and are in the vast majority that don’t respond to any of the drugs are left with self-experimentation and informal communities of anecdotal chit-chat because those are the only avenues we’ll ever have to improve our lives.

  BTW – there has long been an untested theory that being on the Autistic Spectrum is often a result of malabsorption issues.  For example, it is very common for an autistic person to have hyper-stretchy elastic tissues in every bendy stretchy part of their body.  This is possibly a result of having to construct your body out of a limited stockpile of ingredients because the materials in the blueprints aren’t forthcoming from your guts.  There’s no reason to eliminate brain composition  and initial natal construction from this sort of thing.  But again, this will never be tested as all of the research money goes to DNA profiling for the purposes of eugenic elimination of the Autistic Spectrum.

  • [ryuthrowsstuff]

    The connection between autism and bowel disease has been tested and debunked. In fact it was tested heavily by a number of groups in the last few years since the claimed link was central to Andrew Wakefield’s fraudulent research on autism and vaccines. Most of the claims otherwise come directly from the anti-vaccine camp. So while a given autistic person may have a gastrointestinal or dietary problem there doesn’t seem to be any greater link to a specific disease or disorder.

• [Jennifer Dittrich]

  As far as I can tell, the lesson here is that if you have a complex condition, and you don’t communicate with your doctors, they can’t help you very well. 

  I almost lost my mother to Chrohn’s when I was two, and have watched her struggle with this disease for well over 30 years. She has it ‘under control,’ through the help of diet, medication and stress management. There are many, many, many different triggers and they are not the same from patient to patient. Her doctors were all willing to work with her on various aspects of controlling her disease, but here’s the key – when stuff didn’t work, she had to actually tell them so they could try something new.

• [Nutrition Industry]

  If you reject medical science and data, then you are making your health decisions based on faith or personal opinion.  Decisions based on faith or opinion generally cannot be disputed or disproven – they are deeply personal and resist being challenged.  The commenters sharing their faith- or opinion-driven health outcomes are presenting testimonials of personal experience and seeking like-minded individuals.  I sincerely doubt that they wish to argue about such personal experiences nor will they be compelled by arguments based on science or data – they made their decision and they are happy with the outcome.  That is why they want to share with us.  The more engaged audience for discussion of the science is the rest of the commenting population who may wish to weight testimonals against the science.

• [bigfatlamer]

  And don’t get me wrong, I’m glad this dude found an effective, low-risk, cheap therapy for his Crohn’s symptoms. But he didn’t discover some magical food-based cure for Crohn’s disease that “the man” is trying to keep from you. He discovered elimination diets which, as has been pointed out before, the Crohn’s/Colitis Foundation states is a reasonable approach to symptom management.

• [daen]

  There’s actually quite a bit of clinical trial research into the link between diet and Crohn’s:

  http://scholar.google.com/scholar?hl=en&q=clinical+trial+crohn%27s+diet&btnG=Search&as_sdt=0%2C5&as_ylo=&as_vis=1

  … including at least one paper about the role of glutamine (Akobeng et al, Journal of Pediatric Gastroenterology & Nutrition: January 2000 – Volume 30 – Issue 1 – pp 78-84):

  Results: Two of the children, both in group G, were withdrawn from the trial because of nontolerance of the diet. There was no difference between the two groups in proportion of patients achieving remission (intent-to-treat basis): 5 (55.5%) of 9 in group S versus 4 (44.4%) of 9 in group G (p = 0.5). Improvement in mean paediatric Crohn’s disease activity index (PCDAI) was significantly more in group S (p = 0.002) but changes in orosomucoid level, platelet count, and weight were not different between the groups.
  Conclusions: The findings suggest that a glutamine-enriched polymeric diet offers no advantage over a standard low-glutamine polymeric diet in the treatment of active Crohn’s disease. Rather, it appears to be less effective in improving PCDAI. The reported beneficial effects of glutamine seen in many catabolic states must be viewed with caution when extrapolating to the management of Crohn’s disease

  So, surprise, surprise, glutamine isn’t a panacea, and can have side effects too.

  [Edit] And yes, it’s abominable that the medical profession are ignorant of this stuff, but I found this after only 2 minutes with Google …

• [lionelag]

  A few things I want to mention, as a Crohn’s patient for 15 years.

  1.  Pentasa is exactly the sort of abusive patent you guys rail against in the computer world.  Run it through Wikipedia– it’s an aspirin molecule with a second, pentagonally-shaped molecule attached to it.  It is the moiety of an earlier, non-patent protected drug, and thus entitled to another 20 years of protection.  As it is essentially aspirin, it works more or less as well.  In other words, it’s a mild anti-inflammatory which doesn’t work if you have more than mild Crohn’s symptoms.  It is hideously expensive in the US, and far less so in the rest of the world.  I once ran out of the stuff while in Italy.  The same drug, from the same Swiss pharmaceutical firm, for a month’s supply, was €30 instead of the $600 you’d pay without insurance here.

  2.  Why is it always that the same people who want double-blind tests for everything are always convinced that they’re not necessary when it involves diet?  You demand double-blind tests for speaker cables, but are willing to take anecdotal evidence on medical conditions?  I’ve read Gottschall’s book, and many of the things that she recommends for her diet have fiber levels that cause me severe, handful-of-pain meds, back-and-forth-between-bathroom-and-bed-for-days pain.   I am, without *any* scientific evidence to back it up, unwilling to make the major, expensive, time-consuming and almost certainly painful changes in diet that she recommends.  Period.  My diet is limited enough as it is– no salads, no raw fruits or vegetables, no high-fiber stuff like beans, etc..  Without something more than anecdotal evidence, I’m not going to limit it further.  I have a strong suspicion that the people who report improvement on SCD don’t have particularly strong cases of Crohn’s.  The fact that the person who Seth Roberts writes about doesn’t mention steroids, immunosuppressants, or the newish biologicals like Remicade or Humira indicates to me that while he may have Crohn’s, he should consider himself lucky he doesn’t have it worse.

  3.  Requires surgery.  Yes, requires.  Crohn’s follows one of two pathways, generally– either it punches holes in the intestine or colon, leading to the obvious emergency results (I almost bled out at 24 at time of diagnosis), or it causes a buildup in scar tissue.   Eventually, the scar tissue causes strictures, which sooner or later turn into blockages.  I had a foot of intestine taken out last fall, and it made a major, major difference to my quality of life in terms of pain and diet.  The problem is that it’s likely that in another 5-10 years, I’ll have to go through the same surgery again, because another section of intestine will start looking like the surface of the moon and filling with scar tissue.

  4.  Irritable Bowel Syndrome (IBS) is an awful, embarrassing, uncomfortable condition.  However, it is not Crohn’s disease or Ulcerative Colitis, which are sometimes lumped together as Inflammatory Bowel Disease (IBD), and both of which can be life-threatening, especially UC.   Nor are Crohn’s and UC the same as Celiac disease, which is caused by a immune system reaction to gluten; not a “I cut out random things from my diet and I feel better!” reaction to gluten, but a scientifically observable reaction to gluten.  When I see people mix these four conditions up, it doesn’t reassure me that they have any worthwhile information to impart about my condition.

  • [daen]

    Uh, just because one drug looks superficially like another drug doesn’t mean they have the same efficacy or safety profile.  That’s not how chemistry works, especially medicinal chemistry.  Hydrogen peroxide has only one more oxygen molecule than water, but you don’t want to make your tea with it.  And, more biologically relevant, the active ingredient in chili peppers, capsaicin, is based on the active ingredient in vanilla, vanillin, with a fatty acid attached … and I’m sure you wouldn’t want to get those two mixed up …

    http://en.wikipedia.org/wiki/Capsaicin

    http://en.wikipedia.org/wiki/Vanillyl

    [Edit] And I’m confused by your description of Pentasa; it has an amino group substitution in the ring ; that’s it. And that substitution, presumably, is what makes it selective to gut uptake. This stuff turns up in the patent literature from as early as 1932, so, no patent protection here.

    • [lionelag]

      I’m quite aware of this.  Believe it or not, I shortened that long post.

      Mesalamine, the drug in Pentasa, is the moiety of Sulfasalazine– what it breaks down into in the stomach and intestine.  Sulfasalazine dates back to the early 1940s, and was originally invented because a Swedish doctor wanted to see what happened when you combined aspirin and a sulfa antibiotic drug with an azo bond.  It literally is an aspirin derivative that was created in an attempt to make a new antiinflammatory drug.  About 30% of Sulfasalazine breaks down to Mesalamine internally.  Mesalamine, which is obviously a more effective drug than Sulfasalazine (and with fewer side effects) has been studied in Crohn’s disease for 35 years.  It in itself is no longer patentable.  Every time a patent is about to expire, they come up with a new “delivery system” (Pentasa’s are plastic pellets that break down in the intestine– they kind of look like shotgun pellets; Asacol’s are a plastic shell which supposedly breaks down in the Ph of the small intestine) and extend the patent further, or else come up with a new “use” e.g. “mesalamine as maintenance drug for Ulcerative Colitis” “short-term mesalamine therapy for flare-up of Crohn’s diseas”.  Since Crohn’s and UC are fairly rare diseases, there isn’t much demand for the fairly complicated plastics development necessary to come up with delivery systems for the generics for it.   Unless things have changed since I was taken off the stuff a few years back, you can only get generic mesalamine as an enema or suppository, which is useless for anyone who has disease further up than the colon.

      And in the US, where this sort of patent bullshit is permitted, the stuff is $600 a month.  In Europe, where it isn’t, it’s about 1/20th the price.

• [MrEricSir]

  Carbs = inflammation.

  Depending on your body, you might get that inflammation on your skin or internally, or maybe not at all.  Everyone is a little different.

  But of course your doctor only knows what drugs to give you, not how you might experiment with your diet.

• [alanwil2]

  I have IBS.  The doctors I went to see were not able to help even the “experts”.  They were useless.  I had to experiment on my own and found that probiotics and greek yogurt work for me.  The probiotics I buy from Custom Probiotics and Kirkman Labs.  They also sell enzymes which help digest carbs.  I have good days and bad days.

• [saraeanderson]

  I do not understand why people take it personally when their doctors tell them what proven science already says.  You may well die when you get cancer.    It’s not like the doctor is saying that to be mean to you and second-guess your ability to be alive.   

  Crohn’s isn’t something that medicine can treat very well at this time, and is probably not well-understood.  If you wind up in the middle of a medical mystery, you get even fewer guarantees than you do with any other medical interaction.  I have been badly hurt by an odd medical condition – a rare variant of a poorly-understood disease, and can accept that there’s going to be a lot of guesswork in my medical care from now on.  

  Some aspects of modern medicine saved my life, others just can’t help me yet.  If I’d had a fit when there were no easy answers, I’d be dead now.  I am incredibly thankful for the hubris that allows humans to practice medicine.

• [Aurich Lawson]

  I have more than a little direct experience in these matters myself I’m sorry to say, but luckily I have a GI who is able to listen, be opened minded, and is interested in helping me, whatever that might take, instead of choosing an easy way to get me out of his office. Frankly I wish I had a pill that fixed everything, even at $600 a month, but as far as I know in my case there is no such thing.

  Both my doctor and I are firm believers that diet is an absolutely valid approach to explore. However I would caution people to not make giant leaps when it comes to swallowing what these diets promise.

  I’ve done the SCD diet myself, though it didn’t help me. Here’s the thing, even if it does work, that doesn’t mean it works because of the ‘magic’ behind the diet. I happen to be a celiac, been gluten free for years, but the diagnosis rate for celiac in the US is terrible. You might need to just avoid gluten, and can skip the rest of it. If you truly are a celiac then that means being super militant about the gluten avoidance too, we’re talking parts per million. A simple blood test, while not 100% accurate, is a great start, and not expensive to do.

  Alternately, as someone mentioned above, you might have issues with fructose (or a level above that, which is what the FODMAP diet is about, fructose intolerance is a subset of it). Again, a broad diet might help you, but you might be putting yourself through a lot of trouble to avoid a smaller subset of foods. It takes time and patience to find the triggers, and discipline, but if you’re serious it’s worth it. 

  Don’t get me started on the pseudoscience behind paleo diets. You can’t just take some solid, good ideas, and then build on them using whatever mystical voodoo sounds good and have it all hold up.

  IMHO dietary changes as part of dealing with health issues are 100% real and worth exploring, just do them carefully. You can get empirical data to work with. Blood tests. Someone mentioned the hydrogen breath test. I’ve got one scheduled for myself tomorrow actually. I’ll use the data from it to try and chart a path, I’m pretty interested in the FODMAP research coming out of Australia.

• [Mick Hamblen]

  Currently reading Wheat Belly by William Davis M.D.  Dwarf wheat was never tested for human consumption before being released to farmers. Dr. Davis contends that wheat is a major cause of obesity and other health problems. Here is an interview with him http://www.fathead-movie.com/index.php/2011/09/12/interview-with-wheat-belly-author-dr-william-davis/

• [myriad]

  Articles like this make me very uncomfortable. To say that there’s no harm in trying a diet rather than medication is incredibly naive.  Depending on the severity of your disease, you may not have time to experiment endlessly.  I’ve had rheumatoid arthritis for 40 years (I’m 42), and Crohn’s for 10. I’ve been on every anti-inflammatory diet and IBS/IBD diet out there, with and without support from my array of physicians (rheumatologist, gastroenterologist, colorectal surgeon, nutritionist, hematologist, hepetologist, pain management specialist). I can manage some of my symptoms, but not all, and not completely, through diet. I have to medicate (Imuran and Humira) to be functional.  I think everyone should explore all possible options, but my insistence on treating my Crohn’s by diet alone allowed me to get the point where I had to have an emergency colostomy, and was virtually bedridden for almost 2 years.  I had insisted on trying diet and supplements alone because I was convinced that SCD/paleo/GF/FODMAP/crazy stuff would be the fix, and it almost killed me.

• [j_silv]

  I’m a medical student, and I think this is great. I’m sorry his experiences with his GI doctors were so crappy, and I’m sure that TONS of gastroenterologists would be extremely excited to know that dietary changes reduced his symptoms. Our treatment for Crohn’s is really bad – pentasa is basically just a form of aspirin that goes in the intestines, and humira and imuran like the commenter above me is taking are very serious immunosuppressants. 

  Crohn’s disease is really scary, and part of the reason that the public thinks that medicine has no idea what they are talking about is that we really can’t diagnose it definitively until it is very late stage and your intestines are destroyed and have holes in them (like I said, its a super serious disease, a lot of people don’t appreciate that – holes in your intestines is 100% life threatening). If someone comes in with diarrhea that we can’t cure, for awhile we are just wondering, is this Crohn’s? and we try to treat accordingly. Sometimes we are right, and sometimes its something else. 

  The future of Crohn’s treatment is going to figuring out what is triggering the immune system to attack the intestines and trying to selectively turn off that response. Dietary choices are definitely going to be a part of that, and its awesome that this writer is contributing. I hope that Reid finds a gastroenterologist that appreciates the hard work he is going through and enrolls him in a study that can generalize his experience to other people with the disease. 

• [Susan Carley Oliver]

  How does Boing Boing vet their guest posts – do you do any fact checking?  For scientific articles you may want to invest in a subscription to PubMed; a cursory search from my workstation at OHSU reveals many current journal articles about the effect of diet/nutrition on both Crohn’s and IB, which would seem to refute the author’s claim that “[g]reat ideas aren’t always tested or even noticed”.

  ETA: Big Food is similar in Bigness to Big Pharma. The company that makes Activia yoghurt (Group Danone, parent of Dannon) profited EU 1.87 billion last year; they probably have some grant money available for proving that probiotic dairy foods can ease symptoms of some GI diseases.

  • [Mark_Frauenfelder]

    Could you give me a cite to the clinical studies about Crohn’s Disease and The Specific Carbohydrate Diet?

    • [Susan Carley Oliver]

      Mark, my apologies – I didn’t mean for my comment to lead any readers to think I’d found research on the SCD – I haven’t.  Just research on diet as it relates to the symptoms of Crohn’s and IB. 

      The SCD is simply a trademarked term describing a diet; what one would have to do would be to scan the research looking for those that use a diet that falls within the parameters of the SCD.   (Until it becomes as commonly well known as the Atkins diet, researchers have no neason to name check it in their abstracts.)

      If you can get your hands on the World Journal of Gastroenterology, check out “World J Gastroenterol. 2010 March 28; 16(12): 1442–1448.”  It’s lovely because a)it’s a review article, and I love review articles – they summarise the results of multiple peer-reviewed research articles, so you get a great return on your time-spent-reading investment – and b)because the principle investigator is from Tooting, London.

      • [george57l]

        Tooting?  Is this person based at St George’s Hospital?  I do not have access to that Journal so please name names.  St George’s is where I’ve been going for 20+ years to see my Crohn’s consultant.

    • [Aunt Babe]

      Mark, this is what you are looking for/who you should talk to. An actual scientist studying this very thing!
      http://www.broadmedical.org/funding/funded_grants/2008/SA_IBD-0258R_Brown.html
      “This pilot clinical trial will determine whether a newly developed
      “Crohn’s Disease Diet” in the form of an ‘elimination diet,’ derived
      from evidence-based Medline research, is an effective complementary
      treatment for Crohn’s disease. Our preliminary Medline review article on
      1000+ articles investigated the various dietary substances relating
      diet to Crohn’s disease, and we have combined them into a balanced
      “Crohn’s Disease Diet.” ”
      “Crohn’s Disease Diet” =(primarily an “anti-inflammatory diet that is an
      elimination diet – gluten-free, casein-free based with limited
      carbohydrate)

      Dr, Amy Brown, University of Hawaii at Manoa.
      http://jabsom.hawaii.edu/jabsom/about/news.php?articleid=691

      • [Susan Carley Oliver]

        Aunt Babe, the request for volunteers you pointed to was almost 3 years old, and it’s likely the results of her research are discussed in one of two articles on the topic she’s published since then.  I only have access to the abstracts, but both of them seem to have only very general, high level recommendations, along the lines of “yes, it may be useful to discuss diet with your patient and yes, elimination diets may be helpful”.  Nothing specific about the SCD.

  • [ryuthrowsstuff]

    Yeah I seem to remember Dannon being taken to task here in the US for misleading advertising. Apparently they couldn’t prove probiotics had any beneficial effects in the general population, while a number of other groups were able to indicate probiotics did nothing.

    http://abcnews.go.com/Business/dannon-settles-lawsuit/story?id=9950269

• [allenmcbride]

  The byline mentions the title of Seth Roberts’ book, “The Shangri-La Diet”. It doesn’t mention the subtitle: “The No Hunger Eat Anything Weight Loss Plan”. I dunno, seemed relevant.

• [michaelismichael]

  I have Crohn’s, and was diagnosed about twenty years ago. I was having daily abdominal cramps that were blindingly painful. I had surgery to remove about 30cm of my bowel. Since then I have been fine, not on medication, and not on any sort of special diet.

  I post this to say that not all Crohn’s patients have the same experience, and that perhaps diet does not effect all of us in the same way.

• [Jill Casey]

  Interesting story, I like reading about people who find their own solutions to problems. Crohn’s design is certainly not a small one.

• [Barrett Blackwood]

  My wife had ITB. She had to take some expensive medication for it. My wife worked at Starbucks for years and drank a lot of coffee. After a while she decided to stop drinking coffee and suddenly her symptoms dissapeared completely. It was very surprising that 1 to 2 cups of coffee a day could cause that much trouble.

• [steven wright]

  I had IBS and received zero help from traditional doctors, suffering from horrible cramping after each meal, wicked daily gas and intermittent diarrhea/constipation my health sucked.  I went on SCD and in 4 days all my symptoms were gone.   

  SCD helps people with any digestive conditions and many other autoimmune conditions.  I know because I talk with them daily on my blog http://scdlifestyle.com.  If your suffering from any digestive problems, suffering through the horrible side effects caused by prescription drugs, or looking to avoid the near certain surgery of these diseases you owe it to yourself to give it a 30 day try. 

  Reid is a great guy and doing some great work, big thanks to Seth for picking this up and helping to spread the word.  My buddy and I wrote a book that compliments Elaine’s BTVC and explains exactly how to do SCD step-by-step.  In fact if you want to get started check out our free download that shows you how to start the intro diet as soon as your ready. 

  We have many success story interviews on our podcasts.  Check em out if your not convinced here: http://scdlifestyle.com/category/scd-lifestyle-solution-podcast/

• [retchdog]

  Western medicine is great. Double-blind randomized trials are fantastic; necessary in many cases and desirable in basically all.

  However, am I the only one who, while reading these comments, is struck with sheer intellectual terror at the fact that it takes some people /years/ to try changing their diet in response to a digestive disorder? Something is wrong here, and it has little to do with the semantics of formal science. Just saying.

  • [myriad]

     Some people are very resistant to examining the cause of the problem. It can be a challenge when it seems like your body has suddenly turned on you, when it may have worked for years without apparent problems.  And then once you do start trying to modify your diet, the specifics of your_particular_condition may take an interminably long time to determine, even with the assistance of knowledgeable professionals. I don’t have a  grape allergy (according to two allergists after testing), but for years had a severe abdominal reaction to anything containing any part of a grape, even as little as the wine vinegar in mustard on a sandwich.  And now? No problem for some reason.  Not to mention having to learn that fiber = possible bowel obstruction, anything with any texture = rectal bleeding, tangerines = cramping, all other citrus = OK, ad nauseum.

    • [retchdog]

      yes, i was too glib. of course people only report the treatment that finally works; it doesn’t mean they weren’t trying before that. my sincere plaudits for working out your own responses.

  • [Antinous / Moderator]

    …am I the only one who, while reading these comments, is struck with sheer intellectual terror at the fact that it takes some people /years/ to try changing their diet in response to a digestive disorder

    Doing a real elimination diet is a huge, time-consuming project which can leave you eating oatmeal for weeks and slowly introducing bland foods one by one.  And the fact that there may be other factors involved means that your diet experiment may not give you meaningful results unless you’re willing to repeat it multiple times and look at averages.  You could literally spend years eating cardboard and have no definite results when you’re done.

• [scatterfingers]

  My wife has celiac and collitis. We tried this diet. It did not work for us. We’ve tried just about every diet-based solution over long periods of time. No dice.

  • [kjs3]

    This.  My former business partner has became former because his Crohns/Colitis has become unmanageable.  Yes, he’s tried every diet under the sun, religiously, with zero effect and the steroids are debilitating to him.  My ex of ten years had Crohns…diet never worked, anti-inflammatories did.  My employee with colitis was back to 100% after she eliminated certain foods.  Which one of these is *the* answer?  This is why science looks at people like Seth and say “no, that doesn’t mean what you think it means”.

• [Jordan Reasoner]

  Reid, thanks for all the work you’re doing. 

  After having diarrhea 10 times a day I was diagnosed with Celiac Disease…  but a gluten free diet didn’t help me at all.

  The Specific Carbohydrate Diet saved my life and stopped my diarrhea in a week.  Frankly, it gave me my life back.

  There’s a new double blind study being done by Rush University about SCD and it could very well bring this diet into the mainstream as a viable treatment plan (SCD study info here)…

  But like Seth said, go read the Amazon reviews of Elaine’s book and that’s all the data I needed to see.   It’s all we have until more time and money are spent on studies like the one at Rush.  I’ve been happy to share my story with Reid and I look forward to his documentary coming out.  If anything, it’s going to help so many more people because of the awareness it will bring for alternative treatment options.

  I would encourage anyone with Celiac Disease, Ulcerative Colitis, Crohn’s Disease, or IBS to give SCD a 30-trial.  We’ve just seen it work with so many people.

  There’s a free guide to start the diet here: http://scdlifestylebook.com/free.php

  Keep rocking Reid!

• [Manuel Smirnoff]

  I had a problem with a similar history, not nearly as bad as this, but serious. For two years I tried to get my doctor to look at diet, and he categorically denied diet had a thing to do with it. I got rid of the doctor, and started systematically started messing with my diet. Within two weeks the problem disappeared. 

  Doctors’ solutions to these problems are not to cure them, but to throw medicine at them. They don’t know what’s going on, but they only know what expensive drug will sort of help the problem. I don’t believe they’re trained to actually think any more–my pharmacist could do the same job just as well. It’s an evil scam, but they have a very strong union in the AMA.

• [oohShiny]

  I have to agree with Max Schron: IBS is a very large, very vague diagnosis, and what helps some won’t necessarily help others. I’m all for self-experimentation, and if it helps, spread the word; however, I must caution the tone of this piece that suggests that there is some conspiracy against IBS patients by their doctors. It simply isn’t the case. 

  I’m of the opinion that we haven’t scratched the surface of how our guts work from a co-operative ecological perspective, but I’m not about to say we should throw medicine out the window — which is honestly what this article feels like. 

  The biggest thing that freaks me out about it is the obvious lack of troubleshooting. He only eliminated the most likely problem (lactose intolerance) *after* he got the diet-changing advice. Has he tried re-introducing dietary elements to see if it’s a specific intolerance and not general malaise? Why wasn’t this tried before? Why wasn’t he tested for gluten intolerance? What about other intolerances or allergies? I feel as though we’re being presented with a miracle cure for a disease only seen through carnival-hall lenses. I’m disconcerted.

  • [Shelley Blondeau]

    IBS is not IBD. 

    IBS is not IBD. 

    IBS is not IBD. 

• [bardfinn]

  Doctors can be sued for recommending a treatment that has no scientific backing showing it affects the condition.

  Scientific backing requires funding to conduct the studies.

  No-one can patent a diet.

  Capitalists will not invest in research that cannot produce a capital return on investment.

  Performing the study and getting it wrong can mean the end of a career.

  The conclusion that can be drawn: in the United States, if there’s no economic interest in treating you, a doctor will likely not treat you. The science will not be done to save you. If you want your disease treated, or even cured, have a disease that a ridiculously rich (or important-to-a-rich) person has already had.
  And, if you have digestive problems, eat hummus (or whatever works) for a few weeks.

• [Aunt Babe]

  Recent research hass shown that 3-8% of type-1 diabetes  have a gluten intolerance,
  (http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Type-1-Diabetes/39/),
  and people with MS are more likely to have celiac than the general public.
  (http://www.celiac.com/articles/22542/1/Higher-Rates-of-Celiac-Disease-in-People-with-Multiple-Sclerosis/Page1.html) . See a pattern? Autoimmune disease=higher rates of celiac. Why would Crohn’s be any different?

  If it were up to me, every person going into a gasteroenterologist’s office with problems would get a blood test for celiac disease. There is a reason there’s more people in Europe with celiac than in the US…hardly anyone tests for it!  Dr. Fasano at the U of Mass. did a study awhile ago that showed that 1 in 133 people have celiac, but far less than that have actually been diagnosed. A lot of GI docs still think (unwisely) that it’s a rare disease.

• [schmaltastic]

  A lot of people who are pushing dietary treatments for all sort of things can sound quite woo and that’s unfortunate.  That doesn’t mean that diet can or can’t have an effect.  Doing a study involving diet is quite tricky because of compliance, so even when such studies are reported, the data are suspect.  Still, a lot of medical authorities are starting to advocate dietary changes in favor of or in addition to drug therapies, but other medical authorities still view that as woo.

  The incentive structure in medicine in the US is quite perverse.  Doctors are compensated according to the total amount of medicine they apply, not by the outcomes they produce. The good doctors are those that in one way or another manage to practice good medicine in spite of this.  Dietary changes don’t result in the sale of a procedure or a pharmaceutical, so they don’t fit well within the incentive structure of the medical establishment, even if they are good medicine.  Nobody has as much incentive to make the patients better as the patients themselves.  Thankfully, they have a lot more information at their disposal now than at any time previously.  Understanding more about your disease than anyone else in the world is not only possible, its the best way to get healthy and stay that way.

  The free flow of information available to us on the internet has changed our relationship with most industries and professions.  Why not medicine?

  It seems that the set of people with bowel diseases and syndromes of various kinds should start an effort like this:
  http://www.patientslikeme.com
  Or, if the above seems too corporatized by now, at least watch this TED talk for inspiration:
  http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html

• [lovelystrangeness]

  I am going to confess to not having read all 164 comments, but I’m going to throw my two cents in anyway. I have Crohn’s disease (and a BS in Biochemistry if that counts for anything). I am one of the lucky few that does not have persistent diarrhea. In fact- I have no daily side effects (or at least I haven’t in the last 6 years since I was diagnosed). I presented with severe bowel obstruction and stricture and it looked like I would need surgery (yes NEED, or else I would have had rupture and sepsis and all that bad stuff), but thankfully the daily doses of Pentasa (for the person who noticed severe headaches- I had those too at first, but I found that reducing the dose and easing it up eliminated them) and 6-mercaptopurine, an immunosuppressant, worked. Like a charm. But my story is only one of many. An anecdote, like the one cited in the article. Most people with Crohn’s have trigger foods (as others have mentioned before me), but while avoiding those troublesome foods will assuage symptoms, they WILL NOT cure Crohn’s. It is, unfortunately, a chronic disease. Whatever your body is doing to itself, and studies suggest that this likely varies among patients, it will keep doing it unless you hold it off with some personal combination of drugs, diet, and stress reduction.

  Everyone is looking for the magical cure to Crohn’s. A recent slew of studies into the genetic markers of Crohn’s show that different subsets patients have a different suite of mutations and thus likely have different sub-diseases that all present with similar symptoms. I am a huge proponent of personalized medicine, BTW. As soon as gene screens become affordable and reliable, treatment of Crohn’s with medication won’t be such a gamble. 

  I guess my point is: Crohn’s sucks. No one wants to have intestinal problems, and everyone loves the underdog homespun remedy, but unfortunately it is not that simple.

  • [daen]

    Sorry to hear that :(  But you are very probably right.  Given the complexity of both onset and management of Crohn’s, as we read above, it seems a simple solution won’t be forthcoming any time soon.  The problem with either genetic testing (at the genomic level) or gene expression profiling (at the transcription level) is that even if you know which genes are implicated, finding a way of targeting them (either blocking or enhancing their activity or the activity of the proteins expressed) isn’t necessarily easy to do.  The sequencing of the human genome was an amazing feat of science, but it’s the epigenetic effects (such as differential gene expression in different tissues, and between healthy and diseased tissue) which really matter.

    • [lovelystrangeness]

      I’m not proposing gene therapy, per se, but if we know that one patient has a bunch of mutations linked to the autophagy pathway, while another has a bunch of mutations in the regulatory system of the immune system (and we do have this level of understanding for a bunch of Crohn’s-linked mutations with more to come as studies continue), we can say with some confidence that an immunosuppressant might help patient 2, while a more probiotic-based approach might help out patient 1. 
      While epigenetic effects should not be under-appreciated, straight up genetic mutations can also have wide ranging effects. Just because sequencing the human genome was not the panacea some people hoped it would be doesn’t mean it doesn’t hold a wealth of valuable information to mine. I am itching to run some restriction assays on my own DNA and see which of those markers I have, but scientific decency has kept me away from the cheek swabs and electrophoresis machines so far… I am very likely on my way to becoming a mad scientist though. ;)And thanks for the sympathy, but so far so good with my meds and good stress management techniques. :)

      • [daen]

        No, I wasn’t suggesting gene therapy, just pointing out that finding novel genes doesn’t necessarily suggest a therapy.  But you’re right, of course – if a particular SNP or allele is already known to be implicated in one pathway or another, then it certainly would be helpful to know.  Unfortunately, I think that direct-to-consumer genetic testing companies such as 23andme have muddied the waters somewhat.  I read an article in Nature a while ago, comparing the results from the top three, I think it was, for a known set of SNPs.  They barely had any correspondence between each other.  I guess if you want something doing, you have to do it yourself!  Time to fire the  PCR machine up …

        [Edit] Here it is … http://www.nature.com/scitable/topicpage/dtc-genetic-testing-23andme-dna-direct-and-674

        • [lovelystrangeness]

          Ugh. And I thought WebMD was bad. I also detect a certain resemblance to private space flight. Things like this might help drum up funding for scientific endeavors, but they also trivialize the nobler goals behind the technology. 

        • [daen]

          I don’t want to get too down on 23andme (I know someone who is involved in the company), but it’s clear that they do need to play by the same rules that the FDA mandates for other medical device companies.  People can and do make decisions about their health based on these tests, and there have been too many mistakes and too much variance so far for those decisions to be really meaningful.

• [lovelystrangeness]

  Also, a lot comes down to the doctor. An un-inquisitive doctor, combined with an unmotivated and/or uninformed patient can be deadly. My gastroenterologist strictly enforced a restriction diet when I got out of the hospital after being diagnosed with Crohns. I added each kind of food in slowly until I was sure none of them would trigger an episode. I waited a year before eating nuts or popcorn. I also took probiotic culture pills and ate yoghurt frequently. 

  To my fellow IBD sufferers: don’t be afraid to shop around for doctors!

• [Shelley Blondeau]

  I’ve had Crohn’s Disease since 1997. If diets worked, we’d all be cured. As it is I am on Remicade after multiple trials of other medications (including steroids), and I take probiotics and vitamins daily. For a while I made my own yogurt but the thing about that is one day it’ll be great, and the next it’ll feel like food poisoning. This disease is so unpredictable that messing around with a diet is like Russian Roulette. And yes, I despise Remicade. It’s better than dying. If someone feels better by eating differently I guess yay for them. Everyone else with no clue or experience should stop taking pot shots from the cheap seats. 

• [timehof]

  The Chinese can CURE Crohn’s because they can diagnose it instantly using traditional techniques.  It is outrageous that Western medicine does not even show an interest in how this is possible.  They (Western medical establishment – gastroenterologist’s) don’t understand accupuncture and cannot phantom how it could possibly CURE Crohn’s even when they witness what they term “spontaneous remission”.   When it is diagnosed as soon as symptoms occur then acupuncture can cure the condition in a few months.  After being misdiagnosed as irritable bowel disease or even with a proper Crohn’s diagnosis, being told that what you eat has nothing to do with the disease guarantees you a $500,000 patient.  After the intestinal scarring that occurs with continual assault from an improper diet and the inability to control inflammation except with prednisone acupuncture can only hold the symptoms at bay and ween you off the steroids without further inflammation.  My wife’s acupuncturist (Ying Jia in Bloomington Indiana) was sued by one of her first American Crohn’s patient”s gastroenterologist.  At that point in her career she had already enough American MD’s referring to her the patients that they could do little for.  They came to her side in the lawsuit.   The Gastroenterologist had never seen Crohn’s disappear so he sued the acupuncturist for practicing medicine w/o a license.  How dare she ruin his honeypot!!!

• [Stephen Linhart]

  Seth Roberts, on his own blog does seem to promote some dangerous nonsense.

  • [daen]

    Yeah, I found myself running away pretty fast … “Terra Ignorantia” …

• [stuck411]

  I clicked the link really hoping that it would talk about his grandmother suggesting he get infested with pin worms. Apparently flat worms are the ‘in’ thing when it comes to allergies and intestinal problems.

• [kath2cats]

  On a related tangent: “Eleven Things Not to Say to Someone with Crohn’s”: http://www.health.com/health/gallery/thumbnails/0,,20533275,00.html

• [bart4u]

  I have had Crohns for 35 years now and I have tried every thing. Even a diet like this with no milk, milk products, no breads. Did nothing for me. I have to have three resections of my small intestine. About one every ten years The only thing that had helped my Crohns is Humira. Crohns has to be one of the most painful diseases out there. I have had bad kidney stones and the pain was not even close to a bad Crohn attack. This disease has stopped me from working a normal job and has ruined many of close relationships. I hate this disease.

  • [John Gold]

    My best friend’s daughter had Crohn’s until she cut beef out of her diet. What is hurting the science part of it is that its not reproducible cross people as different people have different sensitivities. She found her sensitivity via allergy testing.

• [yadayada]

  Just watched the trailer, and this jumped out at me: The cops seize goat milk with drawn weapons?! What the fuck is wrong with you people over there?!

• [patrick_bateman]

  Wow, there is some rubbish in this article.

  Ok, for starters, if his doctor ignored him then he needs a new doctor.  I have Crohn’s Disease and my doctor readily accepts that it is quite likely that diet can play a role in managing symptoms.  I have come across doctors who dismiss diet… I have used my brain and made the decision to move on.  My doctor also agrees that there is promise in treatments based on deliberately infecting oneself with hookworms.  However, he is a scientist at heart and when someone is really sick he uses drugs if he thinks he needs to.

  Second, note the phrase above – “managing symptoms”.  This guy isn’t curing his disease, he’s worked out a particular way of avoiding its effects.  If you break your leg, not walking on it avoids the effects, but doesn’t cure it (it might help, depending on what else you do).  Likewise if your digestive system is inflamed to hell, not eating irritants will obviously help.

  Third, I have had the same experience as him with the drugs.  Does that mean they are worthless?  Absolutely not.  At my worst, steroids have really helped me.  Pentasa and similar drugs help hundreds of thousands of people.  I have a friend who would be dead, or at least missing most of her bowels, if not for the scariest drugs they use for IBD.  So the constant insinuations that evil doctors are just trying to sell him drugs is complete rubbish. 

  Fourth, there HAVE been studies about diet.  OF COURSE THERE HAVE.  So about half of the comments here, in the vein of “big pharma will shut you down if you try!” are just crap.  There’s a university hospital in the UK where they have had a lot of success with enteral dietary treatment (basically, feeding pre-digested sludge to people with IBDs for weeks to reset their digestive systems).  Other studies seeking to identify particular foods as causes have been inconclusive or have found no direct links. 

  Fifth, I see his anecdote and raise him my own.  I am aware of the book he refers to.  In my experience, my symptoms are greatly reduced by eating MORE of the supposedly “bad” carbs identified in that book.  So which is right?  Neither.  The answer is that in a given case, a particular dietary regimen may assist a particular patient.  Does that mean this guy has discovered some magic bullet?  No.

  Sixth, colloidal silver is riiiiiiiiight on the fringes and potentially dangerous.

  Seventh, trying a series of drugs to see if one works is entirely scientific and is not using the patient like a lab rat.  This is completely typical of how anyone with any serious disease is treated.

  Finally, instead of seeing a bloody naturopath this guy should try a dietician.  You know, someone with actual training who applies logic and the scientific method to dietary treatment of diseases, not a quack.

  End rant!

• [myriad]

   This may sound harsh, but perhaps the patient in this case isn’t the most reliable narrator, or not the best patient. It’s nice that he’s decided to take charge of his health now, but he certainly didn’t seem to do so prior to trying SCD.   He apparently misled his first gastroenterologist for *years* about the effects of his medication, and didn’t bother to read the packet that comes with every Flagyl prescription that says it can cause severe abdominal cramping.  Due to various moves and insurance changes, I’ve had to switch rheumatologists and gastroenterologists many times over the years, and every single one discussed diet modifications for symptom relief with me.

• [Pete]

  feels related:
  Dying To Have Known

   http://www.youtube.com/watch?v=DoUl7F7dWdE&feature=watch-now-button&wide=1

• [mark zero]

  Haven’t seen the video, but it looks from the summary and discussion like a low/slow carb diet + active cultures helped. There’s probably also some talk of probiotics in there somewhere (the stuff I’ve read online by other people often includes it). I’ve heard this before from a couple people I know who’ve had similar problems, and I’ve heard it’s helped. It’s all simple enough for someone to try for themselves, and doesn’t require buying a book, either; like I said, this sounds like stuff I’ve seen online before. If it doesn’t work, try something else. (I’d stay away from colloidal silver, though, hah. I heard about the blue congressman when I was a kid.)

• [ronnie ponnie]

  People, and amazingly enough even doctors, tend to forget that because of differences in DNA makeup, something that works for one person might not work for another. If in a clinical trial something works for only 1 % of the population  the verdict often is that it does not work at all. That’s not the actual truth, it’s working for 1% of the population.

  You can’t apply statistics to individuals. So if this diet works for some peeps, don’t say it’s a placebo effect or the guy is wrong because it doesn’t work for most of us. Those people are just lucky they found a solution that works with their specific DNA makeup.

• [Mareike Kramper]

  Hi, I was diagnosed with Crohns when I was eleven years old. I changed my diet three years ago and practice yoga almost on a daily basis. I stopped all the medication. Went I had my last check-up with the docotr two years ago, the chrons was not visible anymore.

  I totally believe that food is causing a lot of diseases, especially tummy and abdomonal pain. I can encourage everyone to try out a new diet – eat healthy! Become conscious of what you eat! Stay away from as much processed food as possible! And you will have your energy and health back!

  Thanks for the article!
  Mareike

• [Heidrun Schaller]

  I have Crohn’s disease and have run out of medical options because of the side effects. Pentasa actually damaged my kidneys so that I now have only 30 percent of kidney function left, a damage that is irreversible. I started the SCD diet a little over two months ago and have no symptoms. And no, it is NOT a placebo effect because I’ve been on numerous other treatments in the eleven years since I was diagnosed with this dreadful disease and I believed in most of them initially, but nothing worked like this diet does. I’m very active in various patient support groups on the internet and have not met a single Crohn’s patient who really, really committed to the diet with NO positive results. Most of those that strictly adhere to it for a month or more have seen incredible benefits.

• [Heidrun Schaller]

  Also, I’d like to add that not everybody ate crap food before seeing benefits from switching to SCD. The diet I ate would be considered very healthy by most of you. Carbs like potatoes, pasta and rice aren’t inherently bad for you, they’re just bad for Crohn’s patients because their gut flora is in bad shape, which affects the intestinal lining’s ability to fend off bad bacteria and causes intestinal permeability (leaky gut). This in turn triggers inflammation. The SCD diet is an effort to restore gut flora and allow the gut to heal.

• [Tomn M]

  Seth, it’s all your fault that I took a couple of hours and established notability on the Wikipedia article.  There were more than enough journal articles, case reports, and popular media mentions to meet the notability criteria, and it is no longer at risk of deletion.

  • [Reid Kimball]

    Thanks for cleaning up the Wikipedia article!

    • [Susan Carley Oliver]

      Reid, I just wanted to thank you for joining the conversation here – it can take a lot of guts to handle the very strongly stated opinions/thoughts/etc that we boingers often have, and you have managed it with grace.

      Boing Boing Management: this post and the discussion it has engendered makes me wish we had comment system that better supported this kind of back and forth talk.  I wish I could click on Nutrition Industry’s userid and see his/her other comments, maybe a bio, and either contact info or the ability to DM.  Numbering the comments would also be useful, so when I return to this convo I can pick up where I left off.

• [CH]

  I had stomache problems, still have if I go all out on “traditional” diet. Went to a doc, got IBS as a diagnosis, which is really a catch all term for “I don’t know”. Went on a strict low carb diet, and that took care of that.
   
  So I do believe carbs, and for me that means carbs from grains, is a big problem for many… if not all. But, that said… that was a _horrible_ write up. Seriously!!! If you want to convince somebody, perhaps make it more concise, less ranting, and less paranoid. Writings like that are, in my opinion, just making it harder to get the word out. It turns peoples opinions about low carb (or specific carb, or whatever of the million different versions you follow) to something that nutty, paranoid, tin foil hat people do. Please, please, please… tone it down, make it clearer, keep to the point.

• [John Gold]

  My best friend’s daughter had Crohn’s until she cut beef out of her diet. What is hurting the science part of it is that its not reproducible cross people as different people have different sensitivities. She found her sensitivity via allergy testing (scratching your skin and rubbing in the potential allergen and seeing what causes a reaction). 

  Otherwise it is all self experimentation, cut your diet down to a basic starch, if you still have symptoms change your starch (gluten free is one thing to try) , try adding only one new food a day until symtomes come back, keep note of what brings back symptoms and avoid it. If your not sure what caused it between a couple things then scratch a little and dab on the suspects.

• [Alana Muir]

  I work in clinical trials, so I can tell you exactly why no research has been done on this diet: there’s no money in it.  Most clinical trials are funded by drug companies.  Why would they want to fund a trial that will make themselves obsolete?  

  On top of that, the data collection and recruitment of subjects for that kind of trial would be obscenely expensive.  It’s nearly impossible to recruit 300 subjects for a trial where the subjects only have to take a pill.  Try recruiting any number of people to completely change their diet, and actually stick to it.

  And exactly how would you blind someone’s diet?  There’s no practical way to keep people from knowing what they’re eating.   You can’t do a double blind study based on what someone is eating.  Not in the mass numbers you’d need for a proper phase 2 or 3 trial.

  This kind of medical treatment really can’t be put through a clinical trial, and even if you figure out a way to do it, who is going to pay for it?

• [Danielle Currey]

  Thank you for posting this.  As a naturopathic medical student, it is wonderful to hear stories of healing becoming more main stream. 

  I know that many people see health care outside of MDs as quackery, but many of these same people do not know what goes into an ND’s education.  I have an undergraduate science degree, and I am attending 5 years of post-graduate professional medical training on top of this.  I learn from the same Anatomy,  physiology, biochemistry, microbiology, pharmacology, physical diagnosis, laboratory diagnosis, and -ology books as the MD students.  We read double blind controlled trial studies; we create double blind controlled trial studies.  We spend 2-3 years in clinics working with patients, we spend 240 hours shadowing doctors in the community (including MDs), and we have clinical entrance and exit exams to prove that we are ready to graduate.  On top of this we have extensive testing for state licensing. 

  The differences are, we also spend over a year studying nutrition, herbal medications, physical therapies, lifestyle changes, homeopathy, and other healing modalities.  Our “alternative” modalities are time honored and clinically proven.  Many of them have been proven through double blind, placebo controlled trials with higher efficacy to their pharmaceutical counterparts at less financial expense to the patients, and with less side effects.

  We work in preventative medicine and management of chronic disease.  There is a time and place for pharmacy (which we are also trained in and as such better know when that time is) as well as surgery.  However, more comprehensive and gentle methods should always be given a chance to work before bringing out toxic chemicals and the scalpel. 

  I hope this helps some people to understand licensed NDs, and I hope it inspires someone to seek out a second opinion when they are told that their only options are taking a series of drugs for the rest of their lives along with repeated surgery.

• [jhgerber]

  I was diagnosed with Crohn’s Disease 9 years ago and was on a myriad of meds including Pentasa. After a couple years of hearing that changing my diet would not help and having the doctors suggest chemotherapy, I decided to take a similar approach. I tracked everything that I ate, sleep patterns, stress levels and disease level. I started with a bread and water diet and worked from there. Over the years, I learned what foods (and combinations of foods) hurt me. By eliminating them I began to feel better. I found probiotics and a company called VSL#3. I take the probiotics every day. I have also worked to reduce my stress. My belief is that having Crohn’s predisposes our gut to be on the attack for any “irritant” that flows through the gut; which includes stress hormones, alergans, irritating foods, etc. To the extent that I can eliminate those irritants and allow my gut to heal and become stronger, I can force the disease into permenant remission.  I am now several years disease free, meds free, and feeling great. I have also been able to reintroduce foods that I had eliminated.

• [jtiii]

  It’s amazing to me how many people are on this guy about “lying” to his doctor.  He was an incredibly depressed junior in high school who was literally shitting his pants in front of his classmates.  His doctor had told him there was NO CURE.  Really take a second here.  Imagine  you’re 16 and you’ve been told you’re going to have explosive diarrhea for the rest of your life.  In your mind, you’ll never have a girlfriend, never get married, how can you even hold down a job?  Then this drug makes it so you can at least make it to the bathroom.  It does about as much as your doctor gives you hope for.  That’s “better”, isn’t it?  If you’re a teenager in this kid’s mental state, yes.  Jesus, it’s impressive he didn’t kill himself.

  • [Reid Kimball]

    jtiii, Thank you for putting yourself in my shoes at that time and understanding!

• [Mark Wedel]

  Got the Crohns. I’ve got to say that anyone giving you a simple “cure” or treatment isn’t giving you all you need — that includes docs with the pills, and “naturopaths” whatever the hell those are.

  Human metabolism is incredibly damn complex, and it’s different for everyone (you all know someone who eats crap yet isn’t obese, right?). The Crohns is still a mystery. It may be a combination of diet, and the genetic predisposition toward sensitivity to a specific bacteria maybe found in cows’ milk. But who knows. If you got it, then it drives you insane. What am I eating to cause this? What did I eat that made the symptoms stop? Why are the pills not working? You’ve got all these anxious questions in your head, and you’re frantically looking for answers.

  In the above video I saw some good advice (that has helped me, anyway) and some sensationalist anti-science bullshit (colloidal silver?!?). Oh Noes! Cops raided an unpasteurized milk distributor!!! (Probably on orders of the pharmaceutical industry!) But guess what — the probiotics in unpasteurized milk are nothing compared to what you can get in many varieties of yogurt in any grocery store, plus the probiotics in pill form turning up.

  What has helped me was: Yogurt, fish, well-cooked vegetables, flax oil (or something else to get more Omega 3, such as fish). What hurts is: red meat, ground meat, milk, uncooked vegetables/fruits with seeds (anything abrasively fibrous, basically), junk food, too much coffee (I gotta have some, dammit), beer (especially yeasty brewpub stuff). And the pills — I’ve been on pentasa/asacol (basically two different forms of the same drug) for years. I assume they help. Lucky for me, I got insurance — god help you if you have to pay for pills without insurance. 

  I’ve been in remission more or less for years now, never needed surgery. But I’m not saying you should do exactly what I do. Just research, and keep a skeptical mind.

• [Daniel]

  Not sure what’s so controversial about simple statements like “doctors are sometimes wrong,” “doctors are sometimes arrogant,” and “digestive illnesses can often be treated with a change of diet.  I’m a skeptic too, but the human body is simply much more complex than any human being can understand. 

  I mean, come on.  I went to the doctor once and got misdiagnosed twice; I had to argue the doctor out of both of them.  They don’t know everything but often think they do.  It’s a good thing when people take charge of their own health and help themselves by changing their diets for the better.  Not sure why all of you are taking the time to hate on people who just want to be healthier.

• [Elizabeth Ross]

  This is a great description of the pathology of autoimmune disease: http://www.cyrexlabs.com/HomeVideo1/tabid/174/Default.aspx (And, no, I don’t work for this lab, but I’m paying out of pocket for its extensive testing.)

  We need a new approach in medicine when it comes to autoimmune disease. Crohn’s disease, Hashimoto’s thyroiditis, vitiligo, alopecia areata, multiple sclerosis, lupis, rheumatoid arthritis… There are many, many autoimmune diseases. Most people don’t just have one on the list; they have multiple ones. The immune system is not just attacking one part of their bodies. I think it’s overly simplistic to label autoimmune disease by the part of the body that’s getting attacked. I have Hashimoto’s thyroiditis, vitiligo, and alopecia areata. I tell people, “I have autoimmune disease” to try to draw awareness to the general disease state and how prevalent it is. My immune system is attacking my own tissues and organs. The question is how to stop that attack.

  Practitioners like Dr. Datis Kharrasian (www.thryoidbook.com) are using solid science along with natural methods to try to stop the autoimmune attack of autoimmune disease. The goal of the emerging treatment protocols is to heal the mucosal lining of the digestive system so that undigested food particles no longer leak into the bloodstream and set off an autoimmune reaction. In some people, underlying bacteria and fungal infections also need to be resolved. Blood sugar regulation is also very important for autoimmune disease. There are a lot of factors involved. You can see why diet is very helpful to some people.

  Fortunately for the many people like me with autoimmune disease, there are practitioners that are having great success treating the disease with natural medicine applied in a scientific way. By that I mean they aren’t just telling patients to cut out carbs and drink herbal tea. There is extensive testing available now (by labs like Cyrex, unfortunately not reimbursed by insurance) that can help determine what factors have combined in a particular person to trigger the autoimmune attack. I’m going through such testing right now and am eager to start a treatment program based on my results with my doctor. After 6 months or a year of that treatment program, we plan to do the same testing again to show scientifically, not just anecdotally, that my health has improved.

• [Matt Shapiro]

  I’m glad a change in diet works for some people.  Unfortunately it didn’t work for me.  And none of the drugs worked.  The only thing that ended up helping my situation was surgery (but it helped dramatically!)    It was one of the most difficult decisions I’ve ever had to make and it was the right decision.  But it was made only more difficult when well-meaning people I would normally look to for support insisted I just wasn’t eating right.

  So rejoice in the fact that a change in diet helps some people with gut problems.  And if you have gut troubles, changing your diet is DEFINITELY worth trying.  Heck even if it doesn’t work, you pick up better habits :)  

  But do keep in mind it is NOT a cure.  If it were a cure it would help everyone with the disease.  Some people need drugs to feel better.  And many still need surgery.  The last thing these people need is more stigma or to feel guilty that simpler solutions did not work.

• [lillyd]

  These kind of posts always generated the weirdest knee-jerk defensiveness of medicine and science that I’m hesitant to even bother commenting.

  As Daniel says above, why is this so constroverial? I really don’t get why this is so offensive to anyone. People are not statistics. While it may not seem helpful to you (if you don’t have Chrohns, or if you’ve found a different solution to yours), why could this not be helpful to someone else? People need to get a grip…

  Anyway, I’m adding my anecdote in case it helps someone. If you don’t like it, you know, ignore it. My mom has, as a gew other folks have anecdotally said above, Chrohn’s that has been in remission, with the exception of one flare up, for 20+ years. Hers seems very stress-related. Divorcing my step-dad seemed to cause it to go in remission! ;-) She also happened to read about good carbs/bad carbs and cutting out most sugar, white flour, etc. though not in relation to Chrohn’s specifically, but more in relation to weight watching. It does sound like maybe there are some like her who have good results with looking at certain carbs, others who can’t tolerate fiber. (We love our fiber in my family.)

  Here are two things that medicine doesn’t handle well, and they should be, quite frankly, common sense. 1. Guess what? All things don’t work for all people. Never have, never will. Accept it. Get over it, please, for the sake of your patients. 2. Diet affects bodily functions. Duh! Accept it. Please.

  For the consumers of medicine, beware. Don’t think you are a patient. You are a consumer, just like in any other for-profit industry. As such, you are your own best advocate. You have the responsibility of being a good consumer. I don’t like it, but we might as well face that fact and stop beating this dead horse of whether doctors are nice/incompetent/arrogant/wrong/etc.

  As for doctors, you might as well face it as well. If you don’t like it, then try to do something to change the system. None of us as individuals made the system this way, but it is what it is.

• [ganesha71]

  I didn’t see anyone else comment about Low-Dose Naltrexone. That probably deserves a BoingBoing post by itself since it is almost a miracle drug for some Crohn’s patients, not to mention MS and other autoimmune diseases. And it’s super cheap. I just hope it doesn’t end up like Progesterone ….. http://boingboing.net/2011/03/14/10-drug-becomes-1500.html

  • [Elizabeth Ross]

    ganesha71, you’re right that low-dose naltrexone deserves more attention so that it will be discussed in the autoimmune disease community. Since I have Hashimoto’s, I’m pursuing Dr. Kharrasian’s treatment protocol, but I’m passionate about stopping the cause of autoimmune disease in general, so I’m curious about the thinking behind the low-dose naltrexone treatment and the results doctors are seeing. I wonder if the treatment is designed to control symptoms or if it actually helps stop the autoimmune attack, and if so, why it does what it does. Those of us who are autoimmune should be asking questions to find out more.

• [deltaverde]

  Animals are effectively highly complex bioelectrochemical mechisms.  To dismiss the likelihood that altering inputs would effect outputs just because the process hasn’t been vetted by an elite with economic incentives to dismiss it is pretty shortsighted.

• [TheArtofApril-Anna]

  This is a very interesting article. I appreciate the details provided. It reminds me of my own journey dealing with IBS & other challenges but I have not done the specific diet you speak of, many of the changes I made to my diet many years ago do include much of the Haas diet advice. I work with a traditional chinese medicine doctor for my health, we see continuing improvements but the path is slow for me. I am going to look into the Haas diet more to see if perhaps additional changes to my diet might be worth trying out. Thanks for sharing your story! I am so happy to hear you are living healthier and therefore happier!

  Cheers;
  April-Anna
  http://theartofapril-anna.blogspot.com

• [cp1919]

  my what a lot of comments — when I was trying to help my mild IBS (solution — several apples per week) my thought was “why isn’t there a Jenny Craig diet for an exclusionary diet” Wouldn’t it be nice to be able to have a pre-calibrated diet which gradually adds elements until you find your trigger food? Just look at this comment list — is there not an audience for this?

• [Alan Schachter]

  Kudos to Reid on his video and to all the help he’s provided educating others about safe and effective alternative strategies for treating IBD. It turns out that there is now real science that explains why diet is so central to IBD and all autoimmune disease. The lead science is around the interplay between genes, microbiome and intestinal barrier function. See the work of Alessio Fasano at UMaryland – http://tinyurl.com/zonulin and Loren Cordain at Colorado http://www.dovepress.com/the-western-diet-and-lifestyle-and-diseases-of-civilization-peer-reviewed-article-RRCC  And there is finally some movement on clinical trials for SCD in particular at Rush.  It just makes sense that diet is a critical part of the healing process.

• [Martine K Smith]

  … in response to Peter Schmidt and other naysayers
  Placebo indeed — oh my achin’ arse.
  Do you people really think any of us LIKE giving up 7-11 food?!?!
  Or that we enjoy making a hugely radical change that affects not only our own lives, but the lives of everyone with whom we might ever eat a meal, for the rest of our LIVES (not just 2 years)?
  Surely you jest.
  I suffered for half a century (yes 50 years), and even grew accustomed to the constant GI pain.  It was my own anecdotal experimentation that got rid of the pain, and my lifelong condition was only confirmed by a blood test ~after~ I implemented the gluten-free diet.  I would not go back to that pain for the very best baguette in all of Paris, no matter how “anecdotal” my experience is.  Screw science; I feel like a million bucks by comparison and if I’d waited for that magic double-blind experiment, I’d still be doubled-over in pain.  Y’all can have science; I’ll take what works.

• [senorglory]

  There’s an article today about an establishment doctor who is told by his client that she thinks riding a bicyle has releived her of her Parkinson’s symptoms.  The doctor is so impressed, he convenes a study.  http://well.blogs.nytimes.com/2011/10/12/what-parkinsons-teaches-us-about-the-brain/  I’m not presenting this anecdotal evidence as proof that doctors are awesome, but just to raise the possibility that they’re not all merely pill-pushing assholes.

• [freshacconci]

  This was a reply to a comment that appears to have been deleted. Talk to someone with Crohn’s and tell them to their face that they deserve what they get.

• [retchdog]

  The scientific method is, roughly, 1) look for the most proximate cause not yet rejected; 2) change that variable; 3) reject if it didn’t work.

  Diet is reasonable since it’s a digestive disorder. Surgery is effective in some cases, but extreme. Drugs are reasonable and have their own elimination trials.

  There’s absolutely no reason to believe that sticking pins in your skin does anything; it just doesn’t make sense, which is why we demand extraordinary evidence, which you haven’t provided.

  Somewhere in between quackery (useless) and establishment medicine (useful but with some limitations), there is methodical and safe self-experimentation. Acupuncture doesn’t fit there; changing one’s diet does.