Make Yourself Healthy: Daughter Knows Best about Kidney Disease and Gluten Intolerance

(I'm very interested in the Quantified Self movement, which involves self-experimentation and self-tracking to gain self-knowledge. Seth Roberts, a professor of psychology at Tsinghua University in Beijing and emeritus professor of psychology at the University of California at Berkeley, is one of the pioneers of the modern Quantified Self movement. From time-to-time, he's going to contribute a "Make Yourself Healthy" essay for Boing Boing. -- Mark)

Gail, who is now 70, grew up near Toronto. As early as she can remember, she had digestive problems -- pain after meals and troublesome bowel movements (diarrhea and constipation). Her father, a doctor, sent her to specialists. They couldn’t find anything wrong and implied it was all in her head. She had the impression her parents agreed. (Her mother had headaches for years. Her husband -- Gail’s father, the doctor -- said it was all in her head. It turned out her mother had a brain tumor.)

Gail's digestive trouble got worse in her teens. She remembers eating a hot dog on the beach and doubling over in pain. Since then she had at least some discomfort all the time.

When she was in her thirties, an annual checkup found a tiny amount of blood in her urine, a condition called microscopic hematuria. It had none of the well-known causes (e.g., tumor). Her doctors shrugged.  That's interesting, they said. No one said she should be alarmed. "Microscopic hematuria is an incidental finding, and whether physicians should test for hematuria in asymptomatic patients remains at issue," said a 2001 policy statement from the American Urological Association. Sometimes it goes away. Gail's hematuria never went away. It was observed again and again in annual checkups.

In her forties, she had gallstones and had her gall bladder removed. Her doctors told her you don’t need a gall bladder.

In her fifties, she was diagnosed with Hashimoto's thyroiditis, a disease in which the thyroid is attacked by the immune system. She also had a lump in her thyroid. She had most of her thyroid removed and has been taking thyroid medicine ever since.

Because of her hematuria, she had her kidney function assessed every few years by a GFR (glomerular filtration rate) test, which measures how fast your kidneys filter blood. Lower rates indicate worse kidney function. Later she was tested yearly. She doesn't know why the testing was changed from every few years to yearly. For a long time her doctors didn’t tell her the results of the test.

When she was 60, her doctor asked her to get a GFR test every six months. Apparently this was because her GFR was now below 90. Such declines are enormously scary because if they don’t stop you lose kidney function and must get a kidney transplant or dialysis for the rest of your life. Over ten years, from when she was 60 to when she was 70, her GFR declined to 31.

In 2010, when Gale’s GFR score reached 31, her doctor said your kidneys have really degraded. If they get worse -- such as 15 or below -- you may need dialysis. Dialysis would have meant a huge change in her life. She was very active. If she needed dialysis, she wouldn’t be able to play tennis and badminton, garden, do yoga, and so on. Her doctor appeared to have no idea what was causing the degradation. He said her blood pressure was a little high and she should lose weight to lower it, although she was only slightly overweight.

This was the first time he had told her to do something to improve her kidney function. For the first time, she realized the danger she was in. She became quite upset. She phoned her daughter, Ginna. My doctor told me my kidneys are failing, she said. Ginna asked if there had been any warning. No, she said. Later Gail asked her doctor if she had IgA nephropathy -- a question Ginna wanted her to ask -- and her doctor said yes. IgA nephropathy is a condition in which IgA proteins (which circulate in the blood as part of the immune system) build up in the kidneys.

Ginna lives on Vancouver Island. She works in IT and teaches skiing. In 2010, her cat was diagnosed with cancer. Ginna took her to a naturopathic vet named Marlene Smith (now retired) at Tree of Life Veterinary Care, Courtenay, British Columbia, who told Ginna that cats evolved to eat only meat. All animals have an evolutionary niche and we should try to stay within it, said Smith. Ginna was impressed. She had been feeding her cat ordinary dry cat food. To make it dry a lot of carbohydrate had been added. An all-meat diet would contain no carbohydrate. Ginna put her cat on an all-meat diet. She improved a little. She lived nine months after the diagnosis of cancer, which was considered excellent.

Ginna began to read about paleo ideas -- the evolutionary niche idea applied to humans. Websites such as Mark's Daily Apple. Books such as The Primal Blueprint and The Paleo Solution. She encountered many discussions of gluten intolerance, which was new to her. Gluten is a protein in wheat, barley and rye, which are recent additions to the human diet. From Kurt Harris, Ginna learned about the link between gluten intolerance and autoimmune disorders, such as Hashimoto's: "Nearly every common autoimmune disease is associated with at least an order of magnitude increased risk of celiac disease,” wrote Harris.  (Celiac disease is a severe form of gluten intolerance.) For example, a 2000 study found that celiac disease was about five times more common in patients with Hashimoto's than in patients with nondigestive problems and 13 times more common in Hashimoto's patients than in blood donors.

Why is gluten intolerance linked with many diseases, especially autoimmune diseases? The prevailing theory is that gluten causes inflammation in the intestines, making them more permeable, which allows gluten to leak into the blood.  When gluten is in the blood, the immune system makes antibodies against it. Gluten resembles a protein in the body, so these antibodies start attacking proteins in the body.

One estimate is that 1% of the United States population has celiac disease. A third have a genetic variant that makes it more likely. Gail's endless abdominal pain was a good reason to think she might be gluten intolerant. Like most Americans, she ate gluten daily -- toast in the morning, sandwiches, dinner rolls, pasta. Never had she not eaten it. Another reason to think she might be gluten intolerant was her Hashimoto’s. A third was her gallstones, which Ginna had read are weakly linked to gluten intolerance. (Another reason, it turned out, was her IgA nephropathy. According to this article, “the renal disease most commonly associated with [celiac disease] is IgA nephropathy.”)

In early 2011, Ginna told her mother to stop eating gluten (i.e., stop eating bread, pasta, and a few other things). Her mother didn’t object. To Ginna's surprise, her mother did not find it difficult, maybe because it was so successful. Within a week, she felt much better. The abdominal pain/discomfort she’d had continuously since she was a teenager diminished considerably and she no longer had pain after meals. She was very excited about that. Within a few months, for the first time in thirty years, her waist became visible. She had been bloated for thirty years. “It was amazing to her,” says Ginna. “To not be in pain all the time. She said I didn’t realize how much pain I was in until I wasn’t in pain anymore. She’s become an anti-gluten evangelist.”

It had taken ten years for Gail’s GFR score to go from 90 to 31. A few months after she quit gluten she had another kidney test. Your score is slightly better, said her doctor. He implied that such a recovery wasn’t unusual.  Six months after that her score was 62 (Ginna made her ask for a number). That was a huge recovery, no longer close to needing dialysis. (The National Kidney Disease Education Program says a score above 60 is "in normal range.") Gail told her doctor she thought the improvement was because she'd given up gluten. "That's very trendy right now," said her doctor. They did not discuss it further.

Here is another case of kidney disease that got much better on gluten-free diet.

Plainly this shows the value of online health information -- in this case, about gluten intolerance. Neither Ginna nor I knew it was correlated with autoimmune disease. This story also shows that valuable information may be hidden in your medical records. Long before Gail's GFK score reached 31, and her doctor said she might need dialysis, her GFK score had been getting worse. Google Docs and other tools make it easier to track such things than ever before.

You've heard knowledge = power countless times. This case is more complicated. Here, self-knowledge + scientific knowledge + trying new things = power. Does it make sense to ask your doctor pushy questions (such as what's my GFK score? -- to Gail, that was pushy) and keep track? If you are unable to improve your score, maybe not. But, because of her daughter, Gail wasn't powerless. Ability to improve her health came from the combination of self-knowledge (GFK scores, Hashimoto's diagnosis), knowledge of the scientific literature (paleo, gluten intolerance), and a willingness to try new things (there was no guarantee that she was gluten intolerant).


  1. Be sure to get your eleven servings of bread and four servings of dairy every day kids! And always remember that according to the USDA all fats are exactly the same.

    1. And all sugars, according to the new commercials.  HFCS is exactly the same as sugar from cane or beets or fruit….the corn industry says so, so it must be true.

    2.  I realize that you are being sarcastic, you and many that came before or followed your post!!! But not everyone will. So perhaps for those who might not clue in . . . make a comment that even the uneducated will understand.

    1. Also, every doctor she’s ever had apparently.

      I can’t imagine the pats on the head this lady has endured her entire life as doctor after doctor just don’t tell her anything about her own body, compounded with her being trained from an early age to not question doctors, it’s so alarming and sad!I’m so glad she finally found relief and an answer.

      1. Lots of celiac patients experience this, actually. It’s because the severity of the reaction is different for each, so symptoms vary and there’s no classic pattern of presentation. Also, the most accurate test for the reaction is pretty invasive, and pretty expensive. So self-testing and self-diagnosis is how a lot of patients start. But the added patriarchal dynamic at play in this situation just makes it 31 extra flavours of awful.

  2. “Neither Ginna nor I knew it [gluten] was correlated with autoimmune disease.”  And we still don’t know it now.  I don’t see anything in this story, other than the single data point provided by this one happily improved patient, that correlates gluten with autoimmune disease in patients who don’t have celiac disease. UPDATE: yeah, I misread the post; see below. Please ignore this.

      1.  “…in patients who DON’T have celiac disease.”  (emphasis added)  I get that gluten is bad for people with celiac disease.

        1.  Don, I now understand your question.
          Link below to a report on the difference between gluten intolerance and celiac. Since Gail wasn’t tested for celiac and went straight to the GF diet, we can’t know whether her autoimmune problems were caused by just a sensitivity of full blown celiac, although Dr. Fasano’s research points to the fact that people that are merely sensitive don’t have the autoimmune problems celiacs do (which is why I’ll bet two bucks that Gail does have celiac).


      1.  And this is why I shouldn’t read blogs at work.  You’re right, I mis-read that part of the post.

    1. Remember everyone, anecdotal cases could NEVER suggest useful avenues of inquiry, new data points to track, or new means of data collection.  

      I mean, REALLY!  The only kind of research we should EVER do is to pick a completely random assertion and test it exhaustively and then move on to the next one.  Only stupid losers use potentially interesting correlates as the basis for more research.

    2.  Remember the plural of Anecdote can also be called “History”. 

      After years of fighting similar problems (and doctors Poo-pooing) in myself and my daughter we successfully eliminated gluten from our diet improving our state, a few years later a few simple (yet expensive) tests revealed 11 strong allergies to food in myself and 5 in my daughter.  The intestinal disease doctor said she would assume I’m celiac by our history, but we elected to not go through the test since there would be no treatment beyond what we already do.

      The first doctor that even gave us a hint was her dermatologist .. me: “Is it possible it’s food related?”  Him: “Could be.”  Me:”How do we test that?” Him:”Pick something from the big 8 and quit eating it for a week.”

      My mother is STILL fighting the military medical system to get her tests done… but has vastly improved her health by assuming the allergy is there.

      My grandmother said (Who has “Crohn’s” which gets worse with wheat exposure), after all this “Oh, yes, momma had to wet a towel and wrap it around her face when she made bread, or she’d get hay fever”.

      We systematically tested, experimented, GRAPHED, verified, and then finally confirmed via another test.  All based on “anecdote”.

    3. Remember everyone, the plural of anecdote is DATA

      In medicine, a very great proportion of data is anecdotal, since researchers rely on subjective criteria like pain description as well as relying on subject veracity in reporting their own behaviors. Studies on the effects of alcohol consumption, for example, are based on people being truthful about how much they drink. You can’t do medical research entirely in vitro or on the computer.

      1. Generally, the practice of medicine is treating the ailments of a single person who provides anecdotes about themself.  We do clinical research on many people to provide the data to guide the physician’s decision making on what treatment may be best.  Only in extremly rare illnesses (or brand new ones) are physicians reduced to using case reports to guide decisions.

        A few doctors might get the diagnosis wrong, but that doesn’t mean there isn’t data on what ails you.

        1. Long term, large sample studies are based on anecdotal data from subjects (like what they eat and drink, whether or not they exercise) combined with clinical data (like results of lab tests, x-rays, autopsy).

          1. I see your point, but most clinical trial subjective measures (anecdotes) can be cross-verified with objective measures.

            For example, pain is very subjective to report, but mark where your pain is before and after on a visual analog scale and measure the distance between the two marks – you have a pretty consistent way to measure pain relief.  Combine those in a clinical trial of a new pain reliever and you have data!  Tell physicians how much pain relief is seen for which conditions, then they can do the guesswork as to whether the new drug will help a patient.

            And, as you said before, alcohol consumption data relies on the honesty of the patient, but there are ways to cross-verify

            It is not as perfect a system as locking someone in a room (or London) under CCTV 24/7 to get accurate data, but it is a heck of a lot more predictive of efficacy than figuring out if the anecdote “I feel better” applies to your own situation or not.

          2. For example, pain is very subjective to report, but mark where your pain is before and after on a visual analog scale and measure the distance between the two marks – you have a pretty consistent way to measure pain relief. Combine those in a clinical trial of a new pain reliever and you have data!

            Yes, anecdotal data. That’s what I’ve been saying all along. How patients score pain has as much to do with whether their spouse was in a good mood this morning, whether they got good or bad news from their doctor, whether or not they like today’s nurse as it does with the pain med that they’re receiving. When one patient quantifies pain on one occasion, it’s an anecdote. When thousands of people quantify pain on thousands of occasions, it becomes data.

          3. Sorry about the parenthesis.  I didn’t know they cause problems.  Thanks for letting me know!

            I think I am  starting to see what I should have been saying.  You are right that data is made up of individual data points.  Some of the data points may come from the patient telling the doctor subjective information (anecdotal information in a sense).  The subjective information is cross-checked by objective tests and statistically compared to other patients (data).  Until you do that comparison, there is no way to know if the patient’s subjective observations (anecdotes) are typical or atypical (or maybe lying).

            The collection of “anecdotes” in a clinical study does not equal Wisconsin Platt’s statement “the plural of anecdote is [not] data.”  If I don’t have data to compare to a person’s anecdotal experience, I have no idea if their experience is typical or atypical.  If 100 people claim a benefit based on their anecdotal experiences, I have no idea if they found a real cure or 100,000 people tried it and it didn’t work.  It is 100 anecdotes that don’t have any data for context – 100 anecdotes are not data.  It think “anecdotal data” is an oxymoron, but I am not sure. :)

          4. But you can’t objectively cross-check all anecdotal data. You can check the blood sugar for someone who’s complaining about hypoglycemia, but you can’t do that for things like pain and fatigue.

            Unless you’re using sequestered and monitored subjects, you also have to rely on anecdotes regarding diet, drugs/alcohol/smoking, activity level, whether or not they’re taking their meds, etc. Thus, you need rather large studies when you’re relying on anecdotal evidence. And you can still bet that they all said that they eat and drink less and exercise more than they really do.

          5. If something like exercise or diet is important to the outcome of the study, the people designing the study will take those into account during recruitment or by other procedures.  If no one knows if exercise or something else affects the outcome, then randomization is meant to take unknown factors into account

            But, also, isn’t that where placebo controls come into the picture?  If one person says their fatigue improved but they didn’t know that they got the placebo rather than the actual treatment (drug/supplement/etc.), then we score their response as “wrong” (false positive, actually) and not anecdotal evidence of efficacy.

            Unless there are a lot more people saying their fatigue improved in the treatment group than in the placebo group, then you can’t say the treatment worked.  Anecdotal information from self-experimentation has no placebo control (or any of the other ways to control for such comparisons).

            So, is the person telling you how great their untested remedy works a false positive or a proof of treatment benefit?  The fact that we actually get false positives in carefully controlled clinical trials means you can’t tell based on how excited they are.

            But, people who feel they benefited from an untested treatment are sharing what happened to them.  People should not be rude and say their personal experience is wrong (unless there was real harm).  A benefit to a person with no other options is a pretty nice benefit.

            I am approaching tl;dr, so we can discuss sample size in another post if you like because new statistical techniques are hopefully going to get us down into the dozens not thousands for studies.

  3. But what about those 2/3’s or so of people who can eat/process gluten?  It’s nice to shed light on the subject and force it more mainstream so scientist and doctors will actually examine it, but what is present here makes it sound like gluten is pure evil.

    I don’t really seem gluten tolerance any different than milk/lactose.  So people will be able to process it without much or any issue, others won’t.  

      1.  I’m one of those two thirds of people who have no problem with gluten.  I also have no allergies other than two antibiotics.  No congestion, eye irritation or any other symptoms unless I have a cold or the flu (and I go years between those) and the only antihistamines I’ve ever taken were given as a result of the antibiotic reactions.

        So no… there is no question whether some people are capable of processing gluten.  Arguing otherwise is as ridiculous as claiming everyone is actually allergic to peanuts without knowing it when around 500 million pounds of peanut butter are eaten each year just in the US alone.

    1.  >>I don’t really seem gluten tolerance any different than milk/lactose.

      There are a couple of major differences.  First, undiagnosed gluten intolerance can be deadly. Second, lactose intolerance is very easy to diagnose, since symptoms present immediately after ingesting dairy, while gluten intolerance presents as a chronic overall health failure with many varied symptoms.  Doctors who cannot diagnose gluten intolerance literally risk killing their patients.

      1. A peanut allergy can be deadly as well.

        I my point was, society has known about lactose intolerance for some time, nut allergies as well.  This really isn’t that much different, other than the fact that we don’t have a hard and fast way of saying yes you have a gluten issue or you don’t.

        1. But society hasn’t really adapted to the knowledge of nut allergies or lactose intolerance.

          I don’t have a nut allergy but I have a nut intolerance, where some nuts make me feel very sick. I can eat peanuts, but walnuts, hazelnuts, macadamia nuts, pine nuts, and coconut milk seem to give me varying degrees of trouble. And it can be hard to avoid them, especially when it comes to arguing about ‘no, it’s not an allergy, it’s something else but they still make me sick’ and ‘what, you put coconut milk in that?!?’

          I also have a nicotine allergy. I can’t eat eggplant and I have to avoid smokers. Sometimes that means dodging traffic to get to the opposite side of the street. Sometimes I’ll be sick for days because of exposure to someone’s cigarette smoke.

          … society hasn’t yet adapted to that one. If I had been born a few decades earlier, I would have died of it.

    2. A co-worker had celiac disease. It was diagnosed from a colonoscopy, which I think was part of her routine care for other issues she had. Her cilia were not growing properly. I also think there was some blood work that was used in the diagnosis. 

      After going on a gluten-free diet, they could tell it was working because when they scoped her again her cilia were growing properly.  In her, you could really notice her complexion improving with the diet; her skin had been blotchy before and it cleared up as she removed gluten. However, she didn’t lose much weight. She had some odd genetic condition that made her unusually short and, so it’s possible that these are the reason she didn’t lose bloat the way some people do.Anyway, she had a testable allergy to gluten, visible damage from eating it, and visible results from not eating it. From talking with her about her diet, it didn’t sound like for most people there would be an advantage to not eating gluten. Just like you said – if you are not lactose intolerant not eating milk doesn’t make you healthier. I have a friend who is deadly allergic to snails but that doesn’t mean the rest of us should avoid escargot.

    3. And in American restaurants, every meal will include both gluten and lactose… It can be incredibly frustrating to try to find something to eat out-of-town which doesn’t include meat/dairy, eggplants, or certain nuts.

      1.  My rule for this is “Vegetarian, gluten-free, dairy free: pick one”. Because that’s almost all you’ll find out in public.

    1. Many people have said this to me, but it’s not something we can control. (I’m the daughter.) 

      1) There are not thousands of doctors taking new patients on Vancouver Island. 
      2) Even if we could interview potential new doctors, its not clear what kinds of questions we should be asking.

      1.  Ginna, have you been tested for celiac disease yet? The science shows it’s hereditary, and you have a 10-20% greater chance of having it (or a gluten intolerance) than the general population.

        1. I have not been tested, but I did self-experiment. I went off gluten for 90 days, and noticed no changes in my own health.

          When I tried eating a bit of bread again, it didn’t affect me at all. I still don’t eat it on a day-to-day basis, but I don’t need to be “careful” like my mom does. 

          1.  Just FYI a lot of celiacs have ‘latent celiac’ disease, where you’re asymptomatic for years until the symptoms rear their ugly head. To be sure, you’d have to eat wheat every day for about a month then get the antibody tests to be sure. I’m torn, because it’s a personal choice to get tested, but the scientist in me just wants more data. 

            Good job helping your Mom!!!

          2. Ginna, there is a strong likelihood is that you will have to deal with Hashimoto’s at some point in your life.  If you haven’t had children yet, please be aware that pregnancy is a major trigger for the disease.  It’s worth getting the simple blood test every year to check your TSH levels, especially after you’ve had children.

    2.  This is actually very common. I suffered for 9 years with an undiagnosed gluten intolerance. I only figured it out because my g/f felt like trying it, and I said “sure, I’ll do it too”. I felt so much better after a week.

      Here’s the problem: American/western (yes, I know the story was in Vancouver) doctors are pushed by the drug industry to proscribe drugs. We don’t do a lot of healing anymore in this country. We just shovel drugs at people, and try to keep them hooked. Gluten intolerance/celiacs isn’t something you treat with drugs. You just don’t eat it. No money to be made for big pharma. You can call my cynical, but I had the same problem with doctors when I tried to get it solved. They shoveled pills at me and said it might all be in my head. I gave up eventually, and stumbled on the answer myself.

  4. My wife has gluten intolerance, as well as Nongranulamatous Chronic Ideopathic Enterocolitis, an extremely rare disease.  If people have regular stomach discomfort, by all means, get tested.  The doctors can look for a variety of genetic markers, or if those don’t show, they can help set up a test diet.

    What really bugs me is when people try to eat gluten free because it is a trendy new diet, or because they think it’ll magically remove autism.  GF is not easy to do, you need to manage your nutrients much more closely than just eating normally.

    1. Why do you need to manage your nutrients more closely?  People keep saying this.  I know it’s not easy to do – gluten is everywhere in processed foods – but many many many whole foods are gluten-free.  Buy and eat those.  There’s no essential quality to wheat without which humans waste away.  Honest.

      I’m genuinely confused here.  I understand that it can be expensive if you’re used to eating boxed dinner and not cooking from raw ingredients, but I really cannot see the risk to nutrition JUST from cutting out gluten.

      1. It’s not that gluten itself is necessary to one’s diet, it’s that if someone is used to eating gluten containing foods (especially processed foods), they’re getting fortified nutrients with almost every bite.  You can eliminate gluten from your diet and be healthy, you just need to look at what you were eating, and make sure that you’re making up for any nutrients that may be reduced or absent in your new diet.  

        It’s all relative to each individual based upon what their old diet was before going GF.  And as I mentioned in another comment, you can’t just avoid “wheat” “barley” and “rye”; gluten can hide in innocuous sounding ingredients, including brewer’s yeast and natural flavours / natural colorings, as well as many others.  It takes quite a bit of research to be able to fully eliminate it from your diet, unless you eat nothing except what you grow yourself. (Not an option for us, but if anyone can, more power to you :)

      2. Another tip: medications (both pills and liquids) can contain gluten as well, so make sure to check with your pharmacist if you are on a GF diet and have prescriptions.

      3. This. My parent’s consumption of prepared foods was already close to zero. They almost never ate anything deep fried, or breaded anyway. They didn’t eat a whole lot of pasta, and they got most of their nutrients from vegetables. 

        My family always has a salad plus 2 vegetables at every meal. I think we’re covered in terms of nutrients. 

        They wouldn’t have eaten much with “natural flavouring” or any weird ingredients anyway. 

    2. Is it really that rare?  The name you posted means “Enterocolitis that won’t go away on its own, and we don’t know what is causing it but the problem isn’t a granuloma.”  I am really not trying to give you a hard time.  I was just having a Princess Bride moment, “That word you keep using.  I do not think it means what you think it means.”  Maybe I am the one that doesn’t know!

  5. I’m sorry.  I don’t believe daughter knows best.  She extrapolated information about how humans should be eating from advice given to her by a naturopathic vet?  No.  The mother may very well have celiac disease, and gluten may very well be her problem, but in no way would I trust that daughter to give me health advice.

    1. I’m the daughter in the story. And I wouldn’t have advised her to do something potentially harmful, like take weird supplements. But gluten is not actually something humans need to survive. Giving up gluten for a period of time is a self-experiment that can not possibly cause harm in and of itself. 

      So what is the problem?  Honestly, this attitude drives me crazy. 

      1. Naturopaths != real doctors.  I trust real doctors and real science.  That is the problem.  

        I apologize if my tone was/is a bit harsh, and I realize that you were/are only trying to help your mother, but I would recommend more research, because the anti-real doctors and anti-real science attitude drives ME crazy.

        1. Ok, but did you follow any of the links to actual studies? I’m not really a believer in naturopathy at all. I only took my cat to the vet because there were no other treatments available, and my “regular” vet thought there would be no harm in it. 

          Just to be clear, the Naturopathic vet did not suggest I take my mother off gluten. :)

          What was important was the notion that there are groups of foods which we may not be adapted to. 

          I’m not sure I’m necessarily a ‘paleo’ believer. But I’ve become a believer in non-destructive self-experimentation. 

          And I did LOADS of research. There are actual scientific studies, some of which are linked in Seth’s piece, and some others have found using Google. 

          I think it says more about you that you saw the word NATUROPATH and leaped to conclusions. 

          1. Ginna, I’m impressed by your responses to this.  If I were you I’d be about ready to claw out my eyeballs at everyone who could read the article and somehow still believe the doctors were right and you and your mom were somehow terribly, terribly wrong.

            I mean, the medical establishment had many decades to start taking your mom seriously.  This isn’t “one doctor didn’t listen to me once.”  Sheesh.

        2. Experimenting to find out hat foods are causing you hurt by testing the removal of them sounds plenty scientific to me..

          1.  Agreed.  It was a very sensible approach to her problem.  It would only be unscientific to generalize from one patient, to people in general.  Becoming an anti-gluten evangelist based on the experience of one person is a step beyond the evidence.

          2. Oh I see..

            I’ll add that I’m another one of those “patients”. And I’ve gotten to know plenty more. I’m no registered doctor, so I’ll never be able to have a proper paper about it or get a grant to study this, but it’s damn well proven enough for me.
            I’m pretty sure I’d be dead by now if not for people sharing this on the Internet years ago. ;)

        3. Ben, I gather you either don’t have health problems, or that your health problems were treated successfully by “real” doctors. That’s great – but other people, like Gail, have not been so fortunate. Try putting yourself in the shoes of someone who has dealt with years of pain & failing health, and did not the help they needed from the medical establishment. Sounds to me like she found something that worked, with no help from her so-called “real” doctors.

          1. I haven’t had *that* bad of treatment from doctors, but the reality with immune diseases is there’s a lot they don’t know. A good doctor will be up on the most current research, and will make listening to patients a part of that research. However,  you can’t expect A+ performance from every doctor any more than you can from any other worker. So you just have to keep fighting for yourself and some times that actually *does* mean you push back on the expert or fire them. Plenty of people really have died because they didn’t. The chance that you are crazy is much better than being dead from a cancerous thyroid nodule after 20 years of not getting treatment. However, it also means that if you turn your back completely on medicine you are putting yourself at just as great a risk. It’s a hard line to walk.

        4. Well, when the real doctors have failed you, you get to try things yourself and see if they help.  If you try things where the “bad” outcome is “it doesn’t help,” and there’s no harm done (as is true of most dietary changes, especially short-term), and they help?  Well, you’re doing the science your doctors should have been doing and weren’t, and that’s all there is to it.

          Women’s concerns have been and continue to be dismissed by doctors, because there’s this pervasive idea that women just complain more than men.  (Science shows this is wrong. Women have higher pain thresholds, higher pain tolerance, and complain less!  In aggregate of course.)  So “women’s problems” don’t get investigated fully.  Women are also routinely dismissed by doctors if they ask too many questions and noted as “pushy,” which can actually end up in their records and make getting good care later harder.  Fun!

          And for what it’s worth, the naturopath vet was 100% correct on this one.  Cats evolved to eat animals and insects; they get almost no nutrition from plants.  Some/most cats do fine on dry cat foods (mine eat them) but it’s hardly an optimal diet.  The optimal diet for a cat would be whole mice, fur on, with occasional insects and small birds.  That’s not some kind of superstitious nonsense, it’s just…  well, true.  

          Humans are more complex.  We evolved to eat everything in sight and get some sort of benefit from it and therefore different groups of us do well on different sorts of diets.  Some of us can digest lactose and gluten, some of us can’t.  There’s no “one right diet” for humanity.

        5. Ben, many NDs are also MDs… and in my experience, most regular MDs (especially those in general practice) aren’t up on the latest research.  
          They *can’t* be, because there’s just way too much.  And as a result, some of them are extremely capable of giving bad advice and prescribing ineffective or even harmful treatments.

          There’s been a silent epidemic for decades now of patients–particularly female patients–being diagnosed with anxiety or depression or other “oh it’s all in your head” diagnoses instead of their actual, very real physical issues.  (As an example, my daughter went through several different doctors who all tried to diagnose her as just being crazy before getting to the experts who finally diagnosed and confirmed her genetic condition.)  There’s also a fairly significant cultural belief that “doctor knows best”–especially among older doctors who were never trained to assume that their patients might be capable of understanding what was going on with their own bodies.As a result, it really really pays to do your *own* research.  Learn how to use PubMed, and ScienceDirect, and UpToDate.  If you’ve been diagnosed with something relatively rare, find every bit of research you can on it, and put together a notebook of that information and all your medical records (tests, prescriptions, treatments, etc.) to take with you any time you go to the doctor… especially a *new* doctor.  And then don’t be afraid to be insistent about being paid attention to, and don’t be afraid to fire a doctor who won’t.

        6.  Something to also consider, though. We often trust doctors much more than we do science. Be way of just trusting the medical field because sometimes they have a hard time accepting what makes clear sense (i.e. Look at the current labor and delivery policies in the U.S.). If we don’t question them effectively, we’re not really respecting science either.

      2. I’d respectfully beg to differ that it cannot possibly cause harm.  As just one example, by skipping processed breads, her folate intake is very likely down unless she is supplementing this elsewhere.  This can raise homocysteine levels, which can lead to a greater risk for heart attack.

        The paleo diet sounds wonderful in principal, but there are some sever problems with it in practice.

        1. Given your hard on for expertise, you do realize that phasing out stuff like glutin for periods of time to see what works for a person is what actual nutrition experts advise people to do, right?

          1. Considering that my wife is extremely gluten intolerant and we’ve been dealing with it (along with myriad other medical problems) for the last 5 years, yes I did know that, thank you.  I’ve had plenty of time to read up on it on the multiple occasions she lived at the hospital down in Milwaukee for a month or so at a time.

            @Tess: *Once again*, the folate was only an example. All I was saying was to make sure you adjust your diet for anything you might be missing, just like you did with the protein.

          2. Hell, sometimes they actually eliminate *everything* for a while, making the person eat nothing but, say, leafy greens and fish (depends on person).  Then add potential problem-foods back one at a time and see what happens.  It’s kind of an unpleasant process, but not an unhealthy one.

            Cutting out *any* food type for a couple of *weeks* to see if it helps is fine.  Humans are super-omnivores, after all.

            I was driven nuts in my vegetarian years by concern trolls who would tell me I couldn’t possibly be getting enough or complete proteins.  I heard it all the time, seriously.  By people who didn’t know that there is protein in whole grains and in legumes and that the combination of those things with some green leafy things and occasionally something orange is a perfectly decent human diet.  It’s like someone getting upset if I wasn’t feeding my cats food made with real blueberries or something.  Likewise, folate is not a good reason to eat crappy bread-full-of-not-bread-ingredients.  I love bread.  I love gluten in all its forms.  And if I thought it would help my health (I don’t; I’m one of those without a gluten intolerance and nary a hint of the autoimmune) I’d cut it in a heartbeat.  Heck, I’m currently in a period of rice-and-lentils-with-greens for budgetary reasons, so I’m probably more or less GF right now.

        2. A) She’s not on a paleo diet. She removed gluten and gluten alone. She eats other carbs, like rice and potatoes. 
          B) Bread is nowhere near the only source of folate, and not even a particularly good one. She eats “well”, and always has, in the sense that she eats loads of vegetables, especially the green leafy kind. Again, assuming you eat an otherwise healthy diet, there is no possible risk from cutting out bread and pasta. Gluten is not a micronutrient that humans “need”. 

          1. Sorry for implying that I thought she was on the paleo diet.

            As far as the bread, it can be a great source of folate, varying anywhere from 15% to 100% RDA / a two slice serving.

            My point was not that gluten is a ‘micronutrient’; my point was simply that to completely remove gluten from your diet, some major changes in how you eat are needed, and you should be sure that all of your dietary needs are accounted for.

            It’s not as simple as just removing bread and pasta from your diet.  Anything with wheat (licorice, for example), brewer’s yeast (depending on how it’s made), modified food starch, frozen chicken breasts, “natural flavorings”, etc. etc. can all contain gluten.  It’s very difficult to remove it from your diet, since it hides everywhere, since wheat/barley/rye are used as a primary or secondary ingredient in all kinds of things.  Trust me, I know.  Going shopping with my wife, we need to check the ingredients on nearly everything we buy before we put it in the cart, not just for “wheat” but for all of the tricky bits that can or do contain gluten which isn’t explicitly listed.

            In case your mum would like some recipes and food reviews, my wife’s blog is over at

          2. I *still* don’t see the nutrition angle.  It still sounds like fearmongering.  “If you do this you will suffer from some unspecified nutrient lack!”

            It’s complicated for all the reasons you mention.  But not impossible, and if one already eats whole foods prepared at home, not any more expensive.  It means few packaged processed foods but those are not generally considered vitally nutritive.

            I can go to the farmer’s market and get plenty of celiac-friendly foods, including meats and lots of veggies and legumes and even grains.  Then I can cook them.  Then I can eat them.  I have no scary lack of dietary nutrients.  I’m not sure where you get “you should be sure that all your dietary needs are accounted for,” which is the specific concept you keep sharing that’s giving me trouble.  Everyone, when they eat, should be sure all their dietary needs are accounted for.  That’s what eating is and what it does and why we do it.  It’s hard to avoid gluten in processed food, but it’s not hard – at ALL – to meet one’s dietary needs without gluten.  Honestly, I’d go so far as to say it’s easy.  Most of us don’t get tons of our necessary nutrients from the gluten-filled things we eat; we’re largely eating stuff made out of refined flour, so it’s a source of sugar more than anything else, not incredibly important to most of us.

        3. What did humans eat, before processed breads, that made them get here without too much issues about folate?

          1. Processed breads aren’t an exclusive source of folate, as jahxman below notes.  It’s just that they tend to be fortified with 100% of the RDA.  It’s important to make sure you’re eating a well rounded diet, and to ensure that you’re eating foods that contain all of the vital nutrients you require.

        4. This is per my actual doctor who has a medical degree: when a food intolerance is suspected, you try cutting that food out for a while to see how you feel. Trust me, if you have a serious intolerance you are better off getting whatever nutrients from another source.

          There are plusses and minuses for everything. Smoking can relieve Hashimoto’s hypothyroid symptoms temporarily because it stimulates TSH. That doesn’t make smoking an essential part of a healthy diet for the person though.

          1. I agree that cutting out a part of your diet that could potentially be bother you can be beneficial; I’m just saying that if you find success, you should educate yourself on the pro’s and con’s of whatever your new diet is, so as to make sure you’re not missing an nutrients you took for granted in your old diet. 

          2. An additional point I haven’t seen made yet: with an intolerance or allergy, the food is not processed correctly — through the stomach, intestines, etc. — so nutrients in that food are not actually getting into the person’s cells anyway.

      3. “Giving up gluten for a period of time is a self-experiment that can not possibly cause harm in and of itself.”

        I have digestive problems and severe allergies. I generally eat more bread, rice, etc. than anything else because too much protein, fat, meat, dairy, sugar, fruit, or some nuts will make me sick. I tried going without gluten and it always made things worse, and it sometimes gave me severe abdominal pain. I don’t know why oats, corn meal, rice, etc. would create more problems than wheat.

        1. Well, oats have gluten in them. But as I said, for me the take-away is self-experimentation. 

          When I said it can’t cause harm, I meant that gluten is not a micronutrient the human body needs to survive. 

          1. Pure oats do not have gluten in them, it may be dusted with gluten as a contaminant from the processing of other foods. 

            Coeliac charity UK has good information about this

            It’s pretty much impossible  to be totally gluten free because contaminants happen in restaurants, in the production and up till recently there has been little enforcement or checking.

            Glutten isn’t essential but wheat is an incredibly good source of vitamins and proteins and inadvertently has probably contributed more to good health over the last 2000 years than any other food source.

            Between 1900 and 1940, at least 100000 individuals in the southern United States died of pellagra due to over reliance on a maize based diet rather than wheat. And similarly in parts of the world now which rely on deficient grain and a staple, cases of pellagra and beriberi unfortunately still occur.

            It’s interesting that many of the vitamins that people think of as somehow virtuous and of nature were discovered by doctors who were trying to explain diseases like pellagra. Many of the important discoveries surrounding essential nutriens were by doctors who self experimented by eliminating certain foods and seeing what symptoms they got – some unfortunately died in the process. Its a fascinating story which I wish Seth would pay adequate lip service to.

        2. Right, so going gluten-free doesn’t help you, although you’ve tried it, and you found it didn’t help, so you didn’t do it.

          Nothing wrong with that, which is exactly what Ginna suggested to her mother.(I’m wondering, have you seen a link between your digestive problems and legumes?  I have a close friend who needs to restrict legumes and dairy and it’s apparently a sort of unknown intolerance to certain sugars.  Sneaky to figure out, so you might not have tried it.)

    2. “but in no way would I trust that daughter to give me health advice.”

      Who’s trusting? She tried a very rational, non-harmful experiment, and it worked out to her benefit. If it hadn’t worked out she would probably have gone back to the way she was eating before. Damn her for her success! 

      How about her doctors who never tested her for celiac, or for the genetic predisposition to gluten intolerance? Would you still trust them? It’s not exactly fringe medicine anymore, just because there is a “trendy” thing out there to eat gluten free has little to do with the science of it.

      It always amazes me how many people appear to have this gut reaction of dismissing anyone who actually takes responsibility for their own health. Yes, listen to your doctors – they have trained many years to help you. But listen to your body, too, and to the people who know and love you – because sometimes the doctors get it wrong, not least because the human body is too complex for any one specialty to comprehend, and outliers get left behind. Also, science keeps advancing, and not all doctors are keeping up.

      1. >> How about her doctors who never tested her for celiac?
        no one in the story has been tested positive for coeliacs. Without an account from the medicial team – it’s simply not possible to say there was any negligence. It would be really interesting if Seth did some investigation rather than copy blog comments and pass off as journalism.

        you don’t just run random tests on people. the public have this idea that tests tell you ‘yes’ or ‘no’ . 
        If I ran a HIV test on everyone in US then 1000s of people would get a false positive result and 100s of people with HIV would be falsely reassured.

        People present with symptoms, and the doctor’s job is to put the history and examination findings together and order tests which help confirm the diagnosis. Coeliacs is tested for when people present with malabsorption, unexplained weight loss, unexplained diarrhoea, fatty stools, or in children as a failure to thrive. Characteristic rash of dermatitis hepetiformis.
        If someone presents like this then it would be negligent not to check for coaeliac antibodies – but a rather uncomfortable and expensive camera down the throat and biopsy – which rarely but seriously can cause stomach perforation is required to make a diagnosis – the blood test on it’s own is far too inaccurate.

        So you can see that for people with attributable symptoms, a positive result for coeliacs related antibodies and a convincing clinical picture means its worth going ahead and scoping.

        If take someone who has headaches and feel a bit tied and you run a screen because you want to be a caring doctor – which shows a positive coealiacs antibody – do you tell them to quit gluten now? No you need to subject them to an invasive test which was not related to their original symptoms – if that comes back negative once, you probably should probably scope again after a week of high gluten diet.

        most of the test for coeliacs antibodies are around 90% specific, which means 10 people in every 100 healthy people will be identified falsely as ‘positive’ and require an invasive test to confirm.

        The problem with these test is that you have to be eating gluten in order to make a diagnosis- so if you were at all concerned about having coeliac – the worst thing to do would be to go onto a gluten free diet without discussing your doctor as he or she will have to convince you to come off your diet in order to make the diagnosis.

        I know it’s long winded, but the devil is in the detail. 

        I agree that people should feel empowered and encouraged to find foods that agree with them. People do this all the time, I can’t drink more than half a glass of orange juice as it repeats on me in a most uncomfortable way  but i found that a small amount is absolutely fine and so i don’t need to concoct some cargo cult science about oranges to explain that something disagrees with me – i think that’s what people take issue with.

  6. Thanks for the story, Seth. 

    I’ve been off gluten and dairy for ten years, but I had a little social pressure on Thursday to have a dessert I worried had gluten (in store-bought oats). Later, I watched in horror as my belly ballooned outwards for a few hours.

    My mom’s a Hashimoto’s and my dad’s a celiac. We spent years as a family avoiding wheat and dairy, but didn’t make the connection about other (gluten) grains for many years.

    One thing I’ve found always helps (and helped this time, too) is Alka-Seltzer Gold. No joke. It’s hard to find in stores, but it’s my only failsafe relief. 

    Thanks again.

      1. I know that sounds like quackery, but Alka-Seltzer Gold is potassium bicarbonate, unlike regular Alka-Seltzer. My folks have, like, a case of it in their cabinets.

  7. Oh jees, this is coming at an opportune time. I feel like I *am* this lady. Just diagnosed with Hashimoto’s after years of being treated like a loon and lots of pain/suffering/and feeling miserable and ugly.  Major relief/slowing of the process from omitting gluten. I accidentally noticed just because I went on a major diet (raw only) when I put my first random 20lbs on due to hypothyroidism. 

    I think the main thing is that if you *have* an autoimmune disease for whatever reason, you’re going to be sensitive to any allergies in a serious way because they will cause the antibodies to increase. Higher antibody count=more antibodies attacking whatever thing in your body they’re intent on killing. This doesn’t make it a cure, but rather a part of lifestyle changes to reduce the stress caused by the disease. End stage for Hashi’s though is still a dead thyroid, so don’t turn your back on the medical community entirely.

    It’s just a matter of finding a doctor who doesn’t think female+autoimmune disease = hysteric from some 19th century gothic novel.

    My new mantra is “I am not my numbers, if you think ‘but that’s a normal range’ means more than ‘my symptoms have not gone away’ then you are actually the one that doesn’t understand statistics.”

    1. I hated trying to get medical attention for chronic pain.  I think only my relentless pragmatism, obvious frustration, and lack of desire for sympathy saved me.  And I suppose my lack of femininity helped.  But I’ve seen that suspicion from lots of people.

      I had a physical therapist tell me fibro was all in my head.  I stopped going there, of course, but first I told her that the research implies that it’s all in my central nervous system, which is not the same thing.  She said if I could convince myself it didn’t hurt it would stop.

      I can make light of that now, but I went home and sobbed into my pillow because even the people who were supposed to be helping me didn’t believe what I felt was real.  It’s awfully hard to advocate for yourself.

      I’m glad you’re getting what you need, finally.  :)

    2. The commonly used term for thyroid dysfunction in adult women for many decades was “tired housewife syndrome”….I kid you not.

    3. It’s just a matter of finding a doctor who doesn’t think female+autoimmune disease = hysteric from some 19th century gothic novel.

      My problem isn’t that my doctor doesn’t believe me, it’s that my HMO has reduced me to “a nameless number on a list that was afterwards mislaid.” (Doctor Zhivago)

  8. “Whaaah, how dare people figure out diets and health solutions that suit themselves and their own bodies!”  I’m starting to see why people have such scorn for “skeptics.”  Skeptical of everything but expertise.  Strangely enough, these people all idolize Richard Feynman, who said (regarding a heart-breaking misdiagnosis that doomed his first wife in one of the saddest true love stories I have ever read): “I’ll never make that mistake again, reading the experts’ opinions. Of course, you only live one life, and you make all your mistakes, and learn what not to do, and that’s the end of you.”

    My own experience with doctors suggests that a lot of them are unnecessarily arrogant, not fully informing the patient of information that could help them understand their bodies better and not listening when patients have something important to share.  Medicine is not a science; it’s an art that predates science by something like 2000 years.  Find a doctor you can talk to and who talks to you.  If your doctor doesn’t do this and you’re in a position to find another one, fire your doctor.  Don’t just switch, tell the doctor why you’re switching.  Maybe on of these days some of them will get the picture.

    Skeptics should also consider the serious problems plaguing peer-reviewed medical science before pulling out the tiresome quips about anecdotes and data.  More than half of all “scientific” findings in medical science get retracted within a few years.  That suggests to me that maybe “data” in medical science isn’t worth as much as the science fanboys want to think.  And if they’re wrong about the data, maybe they’re wrong about the anecdotes too.

    1. The way I see it, “No One” will ever care as much about your health as you do, so learn, get informed, get to know yourself!!

    2. I wouldn’t ditch the lable. True skeptics should go back to the data as much as they can. Don’t just trust what your doctor says, but don’t just trust what ever new diet fad is going on either (I’m not saying that Ginna was suggesting a diet fad).

      There are many, MANY things that medical science gets right. For instance, there are TONS of studies and systematic reviews of studies, many of them carefully done with good controls and statistical measures, that show smoking is bad for your health and can cause cancer. There are diseases for which we understand the mechanisms behind the disease and the mechanisms behind treatment. This does not mean that your doctor is always right or knows everything. But it does mean that if you are not an expert in medical science but you need treatment, the best person to go to is a doctor. If that doctor cannot help you, this means (a) you should try another doctor or (b) you are in an area where medical science has not found the answers yet. Perhaps there are new studies your doctor hasn’t read about. Perhaps there are new hypotheses about treatment but those hypotheses have not been exhaustively tested and published in peer-reviewed journals yet. Perhaps these are studies you can find on your own or hypotheses you can test. That doesn’t diminish the fact that for sick people, a doctor is the best place to go first.

      Science isn’t perfect. When studies get retracted, that’s because the data wasn’t collected or analyzed correctly. It doesn’t mean that it’s impossible to run a good study and collect good data in the field of medical science. Lots of people do it. Good science is hard, but that’s why there are replications. It simply does not make sense to throw out all of medical science just because it’s hard or imperfect and rely on anecdotes, like you are suggesting in your last paragraph.  

    3. “Medicine is not a science; it’s an art that predates science by something like 2000 years.”

      *citation needed*

      “More than half of all “scientific” findings in medical science get retracted within a few years.”

      *citation needed*

      1. “Medicine is not a science; it’s an art that predates science by something like 2000 years.”[1]
        “More than half of all “scientific” findings in medical science get retracted within a few years.” [2][3]

        [1] Hippocrates (c. 400bce) On the Art of Medecine. Alexandria.

        [2]  Oannidis JPA (2005) Why Most Published Research Findings Are False. PLoS Med 2(8): e124. doi:10.1371/journal.pmed.0020124

        [3] Freedmann (2010) Lies, Damned Lies and Medical Science. Atlantic Magazine (Accessed 26/06/2012)

        (Has a personal hate-on for the kind of opcit people who are too lazy to google for themselves. This really wasn’t difficult).

        1. Anaximander and the Milesian School are considered the origin of one of the first scientific philosophies.  Anaximander died in 546 BC and Hippocrates was born in 460 BC.  I suppose it depends on how you define “medicine” versus “science,” but I still think a citation is needed to support the original statement.

          The Ionnidids reference is a theoretical calculation (not actual data) that talks about a “controversy” that the author created himself (refs 7 and 8 in the paper) based on false findings in microarray data (well known methodology problem).  The Atlantic article is about Ionnidids.  I haven’t had to retract half of my publications, so I am still looking for a good citation to back up the original statement.

          Finding citations is quick and easy, finding the right ones is hard. :)

        2. Supplying your opcites means that only one person needs to look them up, a clear utilitarian win.

          Also, if you supply your opcites, then you can be sure they’re the ones you had in mind.

  9. As a chemist (and someone with celiac disease), I have found that the majority of the medical community is sorely lacking in their knowledge of celiac disease and gluten intolerance. The popular ‘gluten free’ fad has caused them to be skeptical of anyone felling better on a GF diet. My celiac support group has many older members who have had multiple health problems throughout the years. Their undiagnosed celiac has caused them to have severe osteoperosis, liver problems, and GI issues that may never completely resolve. You think diagnosing celiac disease is bad? Try dermatitis herpetiformis, the variant of celiac where you don’t always have GI symptoms but instead have red, fluid-filled blisters that cover your body that are intensely pruritic (i.e., itchy). Dermatologists are even more clueless about the connection. I have had to be my own advocate.

    bcsizemo, gluten intolerance is quite different than lactose intolerance (although presence of the former usually means the presence of the latter) and can have a larger effect on your health. Lactose intolerance can lead to Vitamin D deficiency, where gluten intolerance can lead to the same, as well as GI issues, cancer, kidney problems, and Type 1 diabetes.

    Don, scientific studies have shown that celiac is connected (note word choice) to Type 1 diabetes(an autoimmune disease); in fact, if you have Type 1, you’re as much as 10 times more likely to also have celiac disease.
    Research is being done right now at the celiac center at U Mass on the connection of celiac to all sorts of autoimmune diseases like Type 1 and MS.

    1. My husband is a DH sufferer.  That’s how we diagnosed his celiac disease.  I finally dragged him to a dermatologist about the blisters he kept getting, and they told him to come in when he had a big breakout so they could biopsy it.  

      Turned out, his son was also gluten-intolerant.  We’d thought he was autistic.  

      They’re both 5 years gluten-free now, and the improvement has been amazing.  (note that I am not saying the GF diet is an autism cure.  It was the case for us that the celiac, in his son, was causing autism-like behaviors, some of which he still has.)

  10. I am concerned that this article will encourage people to shift to a diet that incurs significant expense and inconvenience on the strength of very poor evidence.

    Let’s start with the claim that gallstones are linked to gluten intolerance.  The author implies that there is a weak link between the two.  How weak is it?  Is there any actual human based science behind this?  I have not been able to find any published journal article that supports this – would the author be able to provide his source for this?The Eat Right Ontario guide does not mention gluten at all in its gallstone dietary advice.

    1. I am concerned that this article will encourage people to shift to a diet that incurs significant expense and inconvenience on the strength of very poor evidence.

      You’re missing the point.  This is not a medical journal article on celiac disease, gall stones, or gluten-free diets.  This is a story about a family taking responsibility for its own health because their doctors weren’t taking their problems seriously.

      1. The point is that anyone who had gallstones, or wanted to prevent gallstones would come away from this article thinking that adopting a gluten free diet would be helpful.  

        1. Really?  Because I don’t want gallstones and I still don’t think that.  I think that this article would convince me to try a gluten-free diet if I already had a bunch of similar unexplained symptoms, but not otherwise.  I know I’m bright but I guess I’d prefer to believe it doesn’t take brilliance to understand that “this helped me!” means “you should do this even if you don’t share my problem!”

        2.  Really? I want to prevent gallstones, and yet I came away from this article thinking that adopting a gluten-free diet for a time would be a sensible way to see if gluten might be responsible for GI distress.

    2. Why do you think removing gluten would cause someone to ‘incur significant expense and inconvenience’. 

      That’s quite a strange statement. Cutting out gluten foods costs no money. Especially since products for celiacs abound now in grocery stores everywhere. 

      1. From the Canadian Digestive Health Foundation:  
        Each year, families affected by celiac disease spend $150 million to obtain gluten-free foodstuffs; the primary therapeutic option for the disease.Gluten-free products are 2.5 times more expensive than regular items making the overall cost of the disease for individuals and their families enormous.Access to gluten-free foods prevents families with celiac disease from traveling, dining out, and taking part in social activities thereby decreasing their quality of life while increasing the indirect costs associated with the disease.

        1. I can attest to this.  Most foods explicitly marketed as “gluten free” tend to cost a premium, and one’s ability to eat outside of your own kitchen is vastly reduced.  Almost no restaurants,  and even eating over at a friend’s house can cross-contaminate you quite easily.  My father-in-law has made a meal before that’s got only GF ingredients, but stirred it with a wooden spoon, and my wife got contaminated (wooden utensils are notorious for holding onto gluten between washings).

          1. Don’t buy foods marketed as “gluten free.”  Just buy foods that are free of gluten.  I highly recommend the produce section.

        2. My friend just completed several months of dietary restrictions trying to figure out what causes her issues, one month was the gluten-free month. I didn’t see her for that month because going out to eat was nigh impossible, even to a friends house for dinner, because gluten is in everything, even soy sauce. So yes, very expensive, and i’d say socially isolating.

          1. Yeah, have to agree. Neither cheap nor simple. But then being sick isn’t either. You kind of get screwed one way or the other with that one. Buuuut… pain sucks more than not eating at social gatherings.

        3. I don’t know. They haven’t found it very expensive or socially isolating. My dad (who does most of the cooking), has adapted by using things like rice and almond flours in sauces, but other than that they don’t buy many substitutes. They just eat things that don’t have gluten. 

          They don’t buy gluten-free pasta, they just don’t eat pasta. Very occasionally she will buy gluten-free bread, but mostly she just doesn’t eat bread. They do eat a lot of rice crackers, but those don’t seem to be significantly more expensive than the wheat ones. 

          They don’t eat out a whole lot, and she hasn’t found it to be a real issue. Same with eating at other people’s houses. All her friends know about her problem, and they make do. Most restaurants around here have gluten free items. I’m sure that wasn’t the case ten years ago but it seems not to be an issue now. 

          Last weekend we went to a shellfish festival, and the only thing she couldn’t eat were oyster fritters. So it’s not really that limiting. 

          Mind you, for years they’ve made an effort to eat as ‘locally’ as possible, and wheat doesn’t grow on Vancouver Island. 

          Even before she went gluten free, their consumption of pre-prepared foods in general was close to zero. No frozen pizza, no boxed foods, no frozen foods etc. 

          If you don’t eat much convenience food anyway, it’s not much of a shift. 

          1. I keep coming back to that – I would miss gluten, as I love baking my own bread, but cutting it from my diet wouldn’t be that hard.  I think the people who talk about the expense and difficulty eat a lot of pre-packaged foods.

          2. I would likely die of starvation if I cut out gluten, I would have a terrible time adapting and finding substitutes. I eat bread and wheat products everyday at every meal. Pasta every day. Bread every day. I’m lucky that I do not have any health or weight issues that would prevent me from eating gluten rich foods. But if I had to switch it would be very very hard for me and very very expensive. And I don’t eat packaged food or processed food. Everything is organic and local. But I eat pasta at least once a day, if not twice a day. Gluten foods make up 3/4 of the calories I eat.

            So it’s not that simple to just stop eating gluten.
            For a lot of people it would be very very hard.
            I’m happy your parents made the switch and it works for them, but its not always that easy.

          3. Missy Pants, I think you’d find it easier than you imagine.

            The first 2 weeks were REALLY hard, then it was fine. 

            I used to eat a lot of bread. I mostly baked my own, and loved it. I had a sandwich just about every day. 

            Today for lunch I had: 
            Leftover grilled chicken with a tomato, chick peas, and avocado, served on lettuce with a dressing of yogurt, tahini, cider vinegar and fresh basil. 

            Really, it’s not that bad! 

          4. Ginna, I would die. I eat pasta everyday. And rice noodles are not the same. As I said, I’m lucky, and knock-on-wood, will never have to go gluten free. :)

            Though I will one year grow my own wheat.

          5. Missy Pants, what people need varies a lot. One of my friends has found that his digestive tract shuts down if he *doesn’t* eat wheat– maybe you love the stuff so much because you need it.

            Two of his relatives have the same reaction to not getting wheat, and as a result, I wonder if there are other people who have intractable symptoms because of something they’re not eating rather than something they are eating.

        4. Each year, families affected by celiac disease spend $150 million to obtain gluten-free foodstuffs

          I don’t get why the dietetics industry is always channeling grandma.  Instead of buying gluten-free bread, just don’t eat bread.  I see the same bizarre thing for all kinds of diets.  Vegan pork chops!  CRON succotash!  Just eat what’s available that you can eat rather than trying to replicate menus from the 1930s.

      1. Thank you for sending me those links.
        From the first one, “there does not seem to be a significant predisposition to gallstones in celiac disease.”
        The second one mentions gallbladder motility and celiac disease, but does not say that they are more prone to gallstones.
        The third one is a link to an article on primary biliary cirrhosis, which has nothing to do with gallstones and celiac disease
        The fourth one is about celiac disease and pancreatitis
        From the last we also read “there does not seem to be a significant predispostion to gallstones in celiac disease>

        Once again thanks for the links, but I think that they prove exactly the opposite point of what the article is expressing.  This is part of the problem with relying on Google for articles.  You need to also read them.

        1. The assertion was that there is a weak link between gallstones and celiac disease.

          The studies I linked to speak of strong links between celiac disease and primary biliary cirrhosis, pancreatitis, and gallbladder motility.

          Primary biliary cirrhosis, pancreatitis, and gallbladder motility problems are each strongly associated with gallstone formation.

          That reads like a weak link to me – Celiac disease strongly linked to conditions which are themselves strongly linked to gallstone formation.

          You choose to quote, but do not quote the whole relevant passage, as from the last article: “there does not appear to be a significant predisposition to gallstones in celiac disease and consequently, secondary pancreatic damage. Only 9 of 350 celiac patients had a cholecystectomy for gallstone disease; however, in a survey of elderly celiacs initially diagnosed after the age of 60 years, approximately 20% had developed gallstone disease.”

          This is significantly higher than the rate in the general population over age 60. Did you read that last part that you didn’t quote?

          So – a weak link, yes? These celiacs who lived until at least age 60 before being diagnosed seem to have more gallstone disease than the general population.

          Not a strong link, but a weak one. Maybe further study will find a stronger link, maybe not. It hardly matters, this has devolved into ego pedantry. Obtuse is your right.

          1. From Medscape:  “gallstone prevalence in persons aged 60 years was 12.9% for men and 22.4% for women.”  I don’t see this as significantly different from the number of celiacs at age 60 that have gallstones.  None of the papers that you sent my way show a relation between gallstones and celiac disease.  

          2. Yes, because your “concern” is that a slow witted someone who knows they have gallstones will read this article and start spending too much money on packaged gluten-free foods, thinking this will help them. A frightening prospect to be sure. 

            Let’s balance that against the slightly less slow-witted someones who read the article, realizes they experience many of the described symptoms (possibly including gallstones) and ask their doctor to test them for gluten intolerance, with some small percentage of those someones discovering that they can improve their health and well-being by avoiding gluten. (And no, you don’t have to buy the pre-packaged dreck that is marketed to this population.)

            How to weigh the cost/benefit? Gosh, I’m stumped.

            Your “concern” is narrowly focused on an assertion in the article of a weak link to gallstones with celiac and that assertion’s influence on putative credulous gallstone sufferers, and even that straw man is not knocked down by your argument. The available literature does show a weak link.

            Further, you extrapolate from this shaky foundation that gullible gallstone sufferers (a rather small percentage of the population) will be induced to spend gobs of their hard earned cash unnecessarily on consumer goods marketed to the trendy gluten free market. All this “concern” from a single line in a non-scientific article on the internet. And these people will ignore everything else written here, but focus only on that one line.

            Methinks your concerns be overwrought.

    3. Why are you concerned? Let me guess… you haven’t had years and years of undiagnosed stomach pain.

      If you have stomach problems a good test would be to go lactose free and gluten free. Two pretty common sources for problems with your digestive system. If it doesn’t seem to help, then no harm done. If it does help then you have solved the mystery. I would still encourage people to see their doctor about it, though. I don’t think most people go totally gluten free unless they have to… and even if they do, so what?

      I live in a country with high lactose and gluten intolerance numbers. Most doctors are aware of the issues, but still… many people go years and years before getting a diagnosis. My MIL had a lactose intolerance diagnosis… it took a loooooong time before the doctors realized that she actually had gluten intolerance (untreated gluten intolerance can cause lactose intolerance). It is actually _very_ important to catch gluten intolerance. Lactose intolerance is mainly… discomfort… but untreated gluten intolerance will cause serious harm to your body.

      I cured my “IBS” by going low carb. I hadn’t even realized just how much my stomach caused me trouble in day to day life until it stopped (I kept having this really weird feeling… my stomach wasn’t hurting!). I don’t have gluten intolerance (tested… after which the doc lost interest and just slapped an IBS diagnosis on me), but I guess I have some kind of allergy instead. I can eat some flour products, but too much and symptoms return.

      1. All I am asking for is for some support for a central link in this article.  If the claim that gallstones are linked to gluten intolerance has no credible evidence to support it, then the author should remove it.

        1. How about this?

          “A number of other miscellaneous pancreatic disorders have been associated with celiac disease…Because of the possible deleterious effects of biliary tract lithiasis on pancreatic structure and function, gallbladder function in celiac disease may also be important and carefully examined in celiac disease…In spite of these physiological alterations, there does not appear to be a significant predisposition to gallstones in celiac disease and consequently, secondary pancreatic damage. Only 9 of 350 celiac patients had a cholecystectomy for gallstone disease; however, in a survey of elderly celiacs initially diagnosed after the age of 60 years, approximately 20% had developed gallstone disease”

          I said “weakly” to Seth, because there isn’t a direct link. But as this article points out, the function of the pancreas can be affected. 

          There is another study I didn’t find online which suggested that 9% of celiacs in Canada had previously had gall stones. 

          1. As you quote above, “there does not appear to be a significant predisposition to gallstones in celiac disease”.
            Gallstone disease is quite prevalent in our society –  from Medscape, “gallstone prevalence in persons aged 60 years was 12.9% for men and 22.4% for women”.  

            What you need to demonstrate is that having celiac disease increases the number of people who have gallstones over the general risk in the population and that is not supported by the figures you are quoting.

          2. I can’t reply to your comment below directly (last level of nesting!) , so I’ll just say this:

            If the only symptom my mother had was gallstones, I doubt we would have reached this point. 

            She had many, many other symptoms. Starting with abdominal pain and gastrointestinal distress, microscopic hematuria, yes, gallstones, Hashimoto’s thyroiditis, and finally IgA nephropathy, and the beginning stages of kidney failure

            The research is pretty clear that for people who have Celiac, their gallstones may be linked to their condition, i.e. that the gallstones may be an underlying symptom of Celiac.

            I see nowhere where Seth or I claim that all instances of gallstones are Celiac. 

            *I* don’t need to demonstrate that having Celiac increases the number of people who have gallstones. That is missing the point entirely. 
            The point is that some number of people who have had gallstones *MAY* already have Celiac and don’t know it. 

            But even if some people who have had gallstones in the past (but no other health problems) run off and give up gluten as a result of reading this article, as you suggest. How are they harming themselves, exactly?

  11. Is this really kidney disease getting better or is this celiac disease finally being treated and leading to an improvement in a condition caused by celiac disease. Perhaps both of Mom and Daughter should be tested for celiac disease.

    1. We’ve thought about getting her tested for celiac, but apparently you need to go back to eating gluten again *before* being tested, and she’s not willing to do that. 

      Also, getting an “official” diagnosis doesn’t seem to matter much. Whether she officially has celiac or not will not change her behaviour.

      1. How long has she been going gluten free? I’m absolutely no expert on gluten intolerance, but I would assume that if she has had untreated gluten intolerance for decades then her intestines should show damage to the villi even after going gluten free.

        Hmm… one article that I found googling:
        Makes a good point about that there is a “range” from gluten sensitivity to full blown celiac disease, and that the damage done to the intestines varies. Also, that it is a good idea to supplement while the intestine is healing. 

    2.  What is the practical difference between “kidney disease getting better” and celiac treatment improving kidney function?

  12. Kurt Harris is a very wise man.  He doesn’t post much on his own blog these days, but he occasionally pops up in the comments of other blog postings.  He’s really the only paleo-type that I take seriously these days.

  13. This article is so familiar. I got so sick in 2007. I was a nurse, trying to get my husband through school. The abdominal cramping, vomiting, and pain were so severe, I wasn’t entirely sure what was wrong, but I suspected abdominal cancer. I went from 157 pounds to 93 pounds in a few months. 

    I went to doctors. You’d think being a nurse would help, but I was brushed off. I told them about the abdominal stuff, and my resting heart rate being 148 on average. The free clinic (Because I was not a “full time” nurse, so no insurance) doc was a quack, and refused to deal with my heart rate, and only handed me phenergan suppositories for my “problem”. He thought it was anxiety, or in my head. 

    The pain was so bad, I considered suicide. Seriously considered it. Planned it for when my husband was out of school. My internet friends started looking for solutions, and someone had a cat that was celiac. She recommended that as the problem, and I went on an exclusion diet the next day. Within a week, I was still sick, but functional. My heart rate was still an issue, but I could get through a day without throwing up everything. Like the OP’s mom, my waist came back. I was underweight, but so bloated before. I looked awful. 

    Turned out, when I finally found a doc that would help, that I have Graves Disease. An autoimmune issue with the thyroid. It’s kind of rare, and in my kind of nursing, my patients were old enough to have had their thyroids removed, so I had never seen it. I had gone through a thyroid storm on my own, and damn near died. 

    Did going gluten free help? I think so. Do I have any proof? Nope. I’d love to have some real proof, but I don’t. I do know that I was fanatically gluten free for 18 months, with a very supportive husband. It’s the only time in my life my stomach was not bloated. I went back to eating gluten, when my Graves got under control. My stomach bloated out again, and I still had chronic nausea. 

    I’m in the process of going back to being gluten free, and I have to say my stomach is not bloated, and the nausea is going away again. 

    I wish I have some science to back me. All I have is my adherence to a “fad” diet, and some good outcomes for myself. 

  14. “Her mother had headaches for years. Her husband — Gail’s father, the doctor — said it was all in her head. It turned out her mother had a brain tumor”
    Gail’s father wasn’t wrong. It was in her mothers head.

  15. I have a 10 year old daughter with IgA Nephropathy, which was only discovered after several doctors screwed up what should have been a very obvious diagnosis. Only by my wife being persistent (or “pushy” if you want to describe it that way) were we able to get to this diagnosis. We are having a second follow up renal biopsy in several months.

    If you have a child with an apparently incurable disease, you can’t just rely on a single doctor. This article is very eye-opening. Thank you. Yes, what *caused* the IgA nephropathy? They don’t know!  Maybe if we could find out (food allergies?) we could help turn it around and improve her health. WHY WOULDN’T WE TRY??? 

  16. I really wish an actual doctor would weigh in in this comment thread to balance out all the bashing they are getting. I’m not a doctor, but my father is and he has told me a bit about why abdominal pain is so difficult to diagnose. A lot of things can cause abdominal pain including genetic disorders (Crohn’s disease), dietary issues (gluten, fructose, lactose intolerances) or just plain stress. He recently showed me a study that showed positive effects of meditation on irritable bowel syndrome. I’m glad the mother found a way to alleviate her symptoms but I don’t fault the doctor in this story. Moral of the story: do some of your own research. It benefits both doctors and patients when the patients are more informed.

    1. You don’t fault the doctors who watched her kidneys decline for years, to the point of ordering more frequent tests, but never ever told her 1. what the numbers were 2. why she needed more tests or 3. that her kidneys were declining?  Much less tried to figure out why?  They didn’t do anything.  Abdominal pain is really really hard to diagnose if you don’t try.

      Someone I know well has IBS.  The symptoms showed up when he was 6 or 7, and were initially interpreted as him not wanting to go to school, which was also true. It was a year or more before anyone believed him and then he had a battery of tests for his “stomach problem.”  He spent his life until his early 20s in pain.  He saw doctors, had a colonoscopy and an endoscopy and was put on antidepressants that can help with anxiety-based IBS.  When he moved in with me I observed his cheese-and-ice-cream-heavy diet and listened to his story and asked if anyone had ever suggested restricting dairy.

      Nope, they hadn’t.  Not one doctor in 15 years had said “try a week without dairy products.”  Even though the symptoms showed up at the right age and lactose intolerance is common and restricting dairy for a week won’t hurt a thing and doesn’t cost anything.  I was pissed off at them because dammit he presented with the exact symptoms of lactose intolerance and they never, ever even checked.  He grew up in pain – a lot of pain.  A childhood of pain because a bunch of doctors never thought to check for the obvious.

      (He was reluctant at first but eventually I convinced him to try taking lactaid before eating ice cream.  The difference was amazing.  He still has IBS, but hell – he spent a decade and a half putting things through his system that it couldn’t digest.  I’m not shocked it didn’t go away entirely.)
      Hell, my doctor and I disagree on some things and I generally defer to her as she has expertise, but in one case I didn’t and just told her about it and I turned out to be right.  She was fine with that.  It’s my health and she’s the expert I trust to help me make decisions about it.  And it wasn’t like I was making myself ill; the risks were minor, and I figured it was worth a try.  She was happy that it worked out even though it wasn’t what she would have recommended.Every year I get bloodwork done and we go over my numbers together – what they are now, what the normal range is or means, her interpretation of the normal range in some cases, what the numbers were, what I’ve done to change things.  It takes five minutes and leaves me well-informed.  If we saw something that indicated a problem, she’d mention it in a heartbeat.There are plenty of good doctors.  They don’t deserve to be lumped in with the awful ones.  You’re doing just that by implying that they should come here and defend their profession.  If they’re doing their jobs well, I don’t think anyone here has a problem with them.

      1. “what the numbers were” this is where Seth is particularly unfair in not sharing with the readers that many causes of kidney decline where not understood at the time these events took place and that monitoring was the only thing that could be done. Its well recognised that patients find it difficult to remember verbal explanations after they leave the consulting room and it’s much more common now to copy patient’s in on letters and to give leaflets explaining the condition. 

      2. I don’t know what exactly happened. All I have is the story in the article, which is one-sided, after-the-fact, and hearsay. I can’t say the doctor “didn’t do anything,” because I don’t know that. A patient got better without the doctor’s help. Does that make the doctor a bad doctor?

        I’m not lumping in bad doctors with good doctors. I’m acknowledging that all of the stories told so far in the article and the comments are one-sided. I have my own one-sided story. A close friend has had IBS for about 10 years now, since childhood. Only recently was he tested for frutose intolerance and found out he had it. Should he have been tested sooner? Absoltely. But I’m acknowledging that it’s much easier to say that after the fact, after I already know he’s fructose intolerance.

        I don’t think we disagree, by the way.

        1.  Go read the celiac forums. This story is, tragically, common. I spent 9 years in pain and a mental fog, and I’m STILL undiagnosed, but I feel much better on a GF diet.

          My point is that there is a problem in western medicine; other countries do not have this problem. Is is the pharma lobby? Is it the wheat lobby? Is it invalid data or incorrect information in medical journals? Why do you think it’s more readily diagnosed in Europe than it is in the US?

    2.  Abdominal pain being difficult to diagnose does not excuse a doctor who completely failed to test for gluten intolerance as the cause.  I don’t see doctors getting slammed here; I see doctors who fail their patients getting slammed.

      1. Please see my reply to Tess. Basically, it’s easy to say after-the-fact that the doctor should have tested for gluten intolerance. But we don’t know if the mother was exhibiting the typical symptoms of gluten intolerance. And doctors should not order tests for everything because (1) it can get needlessly expensive and (2) depending on the test, they can have dangerous side-effects. So doctors will test for the most common causes of  the symptoms.

        I don’t know if the doctor did or did not drop the ball in this case. I just feel that people are too quickly jumping to conclusions in this thread.

    3. I’m not a doctor but I have siblings who are, and have discussed this sort of thing with them many times.

      Diagnosing and treating patients mostly comes down to applied statistics in terms of tests and treatments; this means the Dr. goes with the most likely test or treatment first, and goes from there to the next most likely, and so on. It’s a reasonable strategy, and means that most patients get taken care of well.

      But for those with a rare condition or one that presents with rare symptoms, it can mean that a medical practitioner misses it. Also, if your symptoms are not severe enough as to be debilitating, some doctors will attribute them to “stress” or whatever other psychosomatic catch-all.

      The reality is that doctors can’t help everybody, and they know it. They do the best they can with what they know, and the good ones keep up with their training in the latest science, but the human body still has a lot of mysteries.

      One of my siblings who is an MD has also had training in psychological counseling and in “alternative” or “holistic” medicine, and practices family medicine. She finds that many of her patients are quickly taken care of by the MD side; the ones that aren’t she can sometimes help with herbs, or massage, or talking, or meditation, or yoga, etc. 

      She is an extraordinary diagnostician; I have seen her do the kinds of things doctors do on TV, i.e. meet someone and immediately pick up on an underlying condition just from observing a rapid heartbeat at their throat or their breath odor or a rash or whatever and often alerting the person to what they didn’t know themselves, but she is also quick to admit the limits of whatever knowledge modern medicine has, when that limit is reached. 

      The problem with many doctors seems to be an inability to admit when their limits have been reached, and to either try to force the patient into the known parameters or deny the existence of their complaint. This is not science, this is just human ego. Another problem is that they are forced to run their practices as businesses, which means there is an incentive on seeing as many patients as possible (i.e. spend less time with each one.)

      How many doctors will still routinely prescribe antibiotics for what they believe is a mild viral infection? I think they do this because they think the patient expects it, that if the patient is sent away without pills they will be dissatisfied. And maybe the very real placebo effect helps them here, along with the fact that most viral infections resolve fairly quickly, especially after the point that medical help is sought. 

      So there is not really any need to bash the doctors; most are doing the best they can with what they know. They are human beings; some do the job better than others. They are authorities in their fields of expertise who deserve respect; and like any authority should also be questioned with some regularity, especially when good results are not forthcoming.

  17. “The prevailing theory is that gluten causes inflammation in the intestines, making them more permeable, which allows gluten to leak into the blood.  When gluten is in the blood, the immune system makes antibodies against it. Gluten resembles a protein in the body, so these antibodies start attacking proteins in the body.”

    You have flipped the observation another way around Seth. The current understanding is that some people are genetically more prone to present harmless or self proteins as if they were foreign. So if you have one AI disease you are more likely to have another. 
    I read the paper you mention, and you have totally misrepresented their good work. There is no mention about gluten in the blood or any resemblance of gluten to other proteins in the body. 
    If you are going to link to a credible source at least make sure it agrees with your nonsense.

    1.  I didn’t visit the link you’re talking about, but I’ve been researching gastro problems as related to my personal chronic autoimmune problem—psoriasis. In the case of psoriasis, the inflammation is not in the gut, it’s in the skin (obvs). In addition to gluten proteins, an apparently common cause of psoriasis inflammation is strep bacteria, and the proteins from strep dna. In a normal healthy person, the strep will never leave the gut. It’ll live there, or be pooped out, or whatever. The psoriasis inflammation starts with the extra-permiable intestine, which allows some of the strep to get into the bloodstream—or not the whole bacteria, just proteins from it . The proteins make their way to the skin, and the presence of these proteins is what arouses the immune response that goes on to attack (in my case) my skin. Some papers I’ve read have observations of 100% of the psoriasis patients having these proteins present in blood or skin, but the proteins are present in 0% percent of the control group. You are correct that one still has to have this genetic over-reactive immuno-tendency, but the response is not just triggered by nothing.

  18. As someone who also suffers from various sorts of vaguely undiagnosed digestive distress, I’m very happy for the protagonist of this story.

    I also find it strange that it follows the “Nessie Disproves Evolution” story.It’s one thing to complain about anti-science thought and the death of the expert in American culture, but, seriously, the story, ultimately, is one where a patient’s daughter’s interaction with a veterinary naturopath, when combined with the untested science of various paleo-diet popularizing websites  is considered unquestionably to trump medical science.

    This is why the plural of anecdote is not data, because while it’s a lot of suggestive ideas, we really don’t know what happened here. Sure, maybe it was gluten. Maybe it was something else in the diet that changed because of the avoidance of gluten. Maybe it was even wholly placebo in nature. I’m glad that it seemed to work, but I also don’t know what to make of it.

    The MD was right on in terms of saying “that’s very trendy right now,” because it is, and I reckon that you can find without effort websites claiming gluten-free as a curative for any possible disorder. So, yes, this is a good result. But let’s take a little care before we start to assume that we need to upend the whole of medical science for it. 

    1. I certainly agree on this. My wife was diagnosed by an endocrinologist with Hoshimoto’s as well as gluten sensitivity. It took all of six months. The science of this is established and not to blame, there are just bad doctors out there. I know there have been several defenders of Western medicine on here, and it can and does work, but it is a tool, whose use is ultimately up to the doctor. 
      We all feel that treatment should be customized to our specific conditions, and that it what these doctors hear constantly, however (I paraphrase Dr. Mark Crislip from Quackcast here, I can track down the citation as needed) the more the individual is treated like the recommended general procedure, the better the overall results. The tests and treatments, dietary or pharmaceutical were developed on large group studies and that procedure results in the best outcomes.
      As for the anecdotal items, if you start watching your diet and what you eat, you tend to feel better. If you cut out gluten you have a 1% or greater (rate of disease plus placebo effect) chance of feeling better, or complete recovery. But, to KNOW what is going on, you have to push for the correct tests and information from your doctor, which is what I think was the real push on this article, not to abandon your doctor and move to self treatment. You do need to be your own advocate, and become better at working with the 15 minute time window that is the economic overlay to the actual science and medicine. I suspect that I am rambling a little here, as I can only see three lines at a time in my edit window, so I will sign off now.

  19. In reality the association between coeliac’s and IgA is well established but only relatively recently and certainly not when this lady was 30.

    The ‘gluten free guarantee’ is what makes a truly gluten free diet expensive. Its a big deal to tell people that they probably can’t eat out in restaurants anymore it does have a big impact on life and many find it hard to stick to the diet – they forget that beer, soy sauce etc might have traces. It’s not about cutting down – it’s about removing it completely, forever.
    Its not lightly that you should ask your patients to give up gluten, and personally I would really want reassurance from antibody test + biopsy before committing to a gluten free diet. 

    Here is a much more clear ‘case report’ than Seth’s minus the retired doctor bashing:

    1. Maybe I occupy a really strange food culture, but as I’ve said before we are just not finding it that hard. It certainly doesn’t mean never eating out again. 

      Restaurants here seem to have no trouble guaranteeing gluten-free, but we don’t eat in restaurants that serve a lot of breaded or fried food to begin with. Off the top of my head, I can’t remember being in a restaurant in the last year that didn’t have a gluten-free menu section. Usually we just start by saying we are gluten free, and asking the waiter to check if there’s a problem. There NEVER is, and my mother hasn’t had a reaction. 

      I suppose if your restaurant experiences are fast food, cheap chinese and pizza you may have a problem. Even then you can usually find something. Mom’s goto meal is unsauced wings and a salad. She’s usually pretty happy when she *has* to eat this meal. :)

      Yes, there are lots of things that have hidden gluten. But once you know them you can avoid them fairly easily. Also, they make gluten free soy sauce. In fact, *good* soy sauce shouldn’t be wheat based – it’s just the cheap stuff. We bring our own when we go out for sushi and I’ve never had a problem. 

      Now we drink cider or wine instead of beer, we ask for foods to be unsauced etc. It’s really not that complicated. 

      We miss bread for sure, but that is (should be?) a pretty small part of any healthy diet. 

      1. It’s a very personal thing. For me I adore food so “unsauced’ would essentially mean eating out being just calories rather than flavour .
        For people who have confirmed Coeliac’s the smallest communion wafer can cause asymptomatic inflammation of the bowel – which can be triggered by poorly prepared restaurant food but may only show up on biopsy (which clearly can’t be done on a weekly basis etc)

        I guess my point is that people talk about changing diet as if it’s really easy fix but for many people it means saying goodbye to the treats they love. My friend with coeliac’s particularly misses Maltesers for instance.

        The point is that many people seem to benefit from reducing wheat products from their diet rather than excluding them completely and they do feel less bloated with more energy, however as I mentioned to completely exclude gluten is hard and for me a i would want to know if I had Coeliac’s before going down this road,

        1. We only order foods “unsauced” if we are unsure. We love food!

          “I would want to know if I had Coeliac’s before going down this road.”

          This to me is really strange. If you cut out gluten (or some other food stuff), and feel better, what does it matter if you have an official “disease”. 

          From what I understand about Celiac, by the time you develop antibodies specific to the condition, your intestines have been inflamed, and therefore permeable, for enough time that your body has developed a specific immune response. 

          So in your world, if you don’t have antibodies in your bloodstream, you would go on merrily eating the food, even if it caused you discomfort, all because you don’t have Celiac officially?

          That to me is really strange. If stopping eating something makes you feel better, then don’t eat that. 

          1. If you have symptoms from Coeliacs’ then you have inflammation – so if removing whole swathes of food groups makes you feel better, wouldn’t you want to know if it was a specific agent that made you feel worse? 
            It’s very common for people to completely change their diet and feel better about themselves but very hard to put it down to a specific food.

            The damage in coeliacs is done by the continuing stimulation of the immune system by the components of gluten – Seth has muddle a whole load of science up regarding the permeability of the bowel wall. Essentially you can’t get rid of antibody producing cells once they are there but you can stop the thing stimulating them. I must stress that this is something you should feel able to discuss with your doctor. 

            I really suggest going to Coeliac charities. Seth’s explanations are confusing and often damaging to patient’s understanding of disease and medicine.

      2. I really feel like you’re over simplifying and passing judgement on other peoples diets. Gluten is in everything. From stock to soya sauce to bullion cubes to shredded cheese. So if you’re a single working girl who doesn’t have time to make every meal 100% from scratch, but still eats well and healthy, its murderous. Please stop saying things like “its really not that complicated” – you’re passing judgement on people’s suffering, and thats not cool.

        We can’t all live in the gluten free shangra-la that is BC apparently.

        1. I’m not trying to pass judgement. I just feel like people are seriously over-hyping how hard it is. You’ll never eat out again! Gluten is in everything! Neither of those statements are true. 

          If your health was on the line, you would just do it. 

          Instead of eating pasta every day, you would do what millions (billions?) of people around the world do. You would buy a rice cooker and make  a batch of rice every morning, or every second morning. (It keeps it hot all day while you work.) You would buy gluten-free soy sauce. 

          You would buy a brand of stock that doesn’t have gluten. You would switch to rice crackers. And honestly, if you’re buying shredded cheese where there are more ingredients than, you know, cheese, there are larger issues. Half of Campbells soups are gluten free. 

          BC is not a food shangri-la. I live on an island! When I go to grocery stores in the US there is approximately 5 times the amount of food. You can order millions of food products online that are unavailable to me. 

          I have travelled in the US since switching to gluten-free. I’ve been to Fresno CA, Springfield MO, Binghamton NY, Woodinville WA and other small places for work. I have always managed to eat something. I mean, go to Red Lobster or the Outback or something and order meat, a baked potato and a salad with vinaigrette. Simple.

          I just think if you start with the attitude that it will be impossible, then of course it will be impossible. 

          1. If your health was on the line and there was a diagnostic test that helps you understand a) if your hunch is correct and gives you some idea of the burden of disease and how well you are controlling it….why wouldn’t you do that if your “health was on the line”
            Coeliac’s has an unique and a very different pathophysiology to other allergies. It’s very much misunderstood ironically because it’s one few diseases that people are aware that the medical treatment is diet changes alone. Can’t win

        2. Most of the world doesn’t eat wheat as a staple part of their diet. It’s not really that far-fetched.

          1. rubbish. Wheat is consumed in massive quantities and was key to human population growth and civilisation. It’s a recent thing to forget all that and it is incredibly tendy to bash wheat. Medicine and biological science has spent decades elucidating the effects of glutten and the fact that Coeliac’s pathophysiology is well understood and that we have a cure is a triumph – but it would be irresponsible to preach the message that wheat is bad for everyone without evidence of harm. 
            There is a big difference between wheat allergy – which would have you in hives and wheezing to coaeliacs both of which are serious medical conditions. The notion that there might be subclinicial ill effects of wheat consumption is interesting, some people certainly find eliminating wheat has improved their life. And it may be discovered in the future that for some people there is an upper daily amount of wheat which consumption beyond that has deleterious effects – this is not the same as wheat allergy or coeliacs.

            The interesting point then becomes the fact that if there was a new pill developed that would negate the effects of Coeliacs – does medicine prescribe that first line or suggest a gluten free diet as first line. I have friends who are self diagnosed ‘wheat intolerant’ who would probably stick with a diet as it was their choice to do that – where as my Coealiac friends would love to be able to eat their favourite foods – they had no choice but to go on the diet.

          2. rubbish. Wheat is consumed in massive quantities and was key to human population growth and civilisation.

            It’s not the historical staple of East or South Asia, Africa or the New World. So what are you on about?

  20. First, I want to thank Mark for writing an intro to Seth’s article.  Seth’s previous articles on BB have generated a lot of flak for BB when you compare the things Seth says to the very scientifically savvy things Maggie says here.  For Mark to say ‘I’m interested in this topic’ really helps (at least to me) frame Seth’s post as being a ‘topic of personal interest’ rather than a ‘breaking scientific news story.’  I am glad he included it.

  21. Three, one very simple protocol that allergists follow is challenge-dechallenge-rechallenge.  If you think a food is making you sick, you can eliminate it from your diet to see if you feel better.  Then, after a few days or weeks, reintroduce the food into your diet to see if the same symptoms come back.  This protocol is stronger evidence that the food is actually making you sick compared to just an elimination diet.

  22. Four, if a person says that they tried something and it worked, do not argue with them unless they did something potentially fatal (i.e. ‘that arsenic sure cleared up my headache like nothing else, you should try it’).  Yes, they are sharing an anecdote (which is not data), but you are not inside their body to know what happened.  If 10 people tell you something works, these are 10 anecdotes because you will never know if 5000 people tried it and it didn’t work.  In contrast to people who believe something works, there aren’t many people going around all excited telling anyone who will listen that something didn’t work.

    But, there is a reason we do actual science rather than relying on self-experimentation. Science is the only way to know for sure if that ‘something’ is going to work for other people.  If a friend tells you that doctors and scientists are crazy for saying that ‘something’ doesn’t work when it worked for your friend, it is probably less likely that the ‘something’ will work for you (not saying it won’t).

    Fifth, read the comments on some of Seth’s previous posts here on BB.  There is a lot of valid criticism regarding cherry-picked evidence and incorrect interpretations.  He chooses to focus on hot button health issues (can’t get much more hot button today than gluten) where there are few good answers on treatment or cure – or a lot of people who don’t like what they hear from actual science.  I recommend a big grain of salt.

    I like reading this kind of stuff to see if I can update my worldview, but, while Seth’s writings have encouraged me to look up research I hadn’t read before, he really just seems to be finding a few people who believe ‘something’ works and writing about them.  It’s easy to find a few people who have something in common to believe, and it isn’t productive to tell them not to believe it.  Just don’t make it sound all “sciency” if you are not talking about actual science.

    1.  you sound like one of those very lucky people who can afford to wait until all the authorities have 100% proved something, and then the public has 100% proved that they told the truth about it, before you decide to change your life. i applaud you for your bravery.

      1. Sorry if I gave you that impression.  Let me see if I can rephrase.  If you have treatment options for your condition that have been proven in clinical trials, it is much more likely that they will work for you than something that hasn’t been tested (not saying that there is no chance at all the untested remedy will have some perceived benefit).

        If you want to try a treatment option that has been proven ineffective in a clinical trial, you shouldn’t expect it to work for you (even if you feel that your set of symptoms is unique in the whole world), but there is always the long-odds chance it might.

        If you have no clinically-proven treatment options (the case you are mentioning I think), then you don’t have any way of knowing ahead of time if an anecdotal treatment might work for you.  If it is not known to be harmful, why not roll the dice and try it?

        If you feel better and your doctor says you didn’t (inadvertantly) harm yourself (things like kidney failure, not vague ruminations and finger shaking about what you might have possibly done) – woohoo, you are a new source of anecdotal  evidence for benefit.  Who cares about that – you feel better and didn’t hurt yourself!

        So, using an untested remedy when there is a better option = bad.  Using a safe but untested remedy when there is no other option = seems OK to me.

  23. I’ve been gluten and dairy free for 9 years now; I also have Hashimoto’s, which I had prior to celiac.  There’s no question that I am better off without it, although it has not cured me of all the symptoms.

    I tell you what: staying off gluten-full foods is easy when your motivator is the feeling that you are being stabbed in the abdomen with rusty hot knitting needles.

    Now, I guess for you guys I’m gonna have to dig up the links, but my understanding of celiac disease , is that if you have it, as long as you eat gluten, and the longer you eat more of it, the more your intestines are going to get damaged.  If you abstain from it religiously, over time – your guts should heal up. This is why the only way that the ‘gold standard’ of gluten disease testing (per my visit to the Mayo Clinic, anyway)  – a biopsy of the small intestine – can be done is if you have been regularly eating gluten for a while! So theoretically, no, you shouldn’t see any sign of messed up instestines due to gluten, over time, if you completely 100% avoid it. If the lower gi is still wack, this is either because a) you are cheating or unknowingly still consumign it b) you have another/other problems.

    There are those who claim that they religiously avoid gluten like it’s the plague, and have for years, but if they touch anything that has even brushed against something with gluten in it, they will instantly wig out, vomit, etc. I’m not saying these people don’t have a health issue with gluten or that they don’t have celiac – but I suspect these people probably ALSO have a gluten ALLERGY (which is NOT celiac) and should probably carry an epi-pen. And yeah. You can unfortunately have both celiac diseas and an allergy to it (though I have yet to run across a person who knows what I just told you and has confirmed that is indeed them). But really, even without confirmation, we get back to that old “Doc, it hurts when I do X.” “Ok, then don’t do it.”  Nobody’s going to starve (yet) with a dearth of wheat products.

    Yes, some docs (and non docs) state “wth? Why does everyone all of a sudden have this illness?”  I would argue that 1. we didn’t have the diagnostic tools 30 years ago, or if we did, gluten intolerance as a diagnosis was barely known 2. gluten is in so many (*#&(!*#& prepackaged foods us in the west have all been chowing on now for years and years, one wonders if we’ve accidentally discovered the fact that eating wheat in every freakin’ thing we consume is simply not a good idea for humans.

    Frankly, I don’t find the diet expensive as much as it can be time consuming if you are someone who likes to cook. Yes, gluten free prepackaged anything CAN be more expensive, but really, these days it’s not that hard. Consider that potato, soy, corn, rice, quinoa, buckwheat are all grains and pseudo-grains that can be (and are) eaten ‘instead’ of gluten.  Sure, you could buy things like ‘gluten free oreos’, but you really don’t have to.

    There are reasonably priced ‘whole food’ bars you can buy now, like Kind or Larabars, that have nothing but fruits (some veggies) & nuts in them. Amy’s makes a line of several soups that are gluten free.  Both of these things are now carried in regular supermarkets at prices that are a lot less than if you were to buy them at Whole Foods.

    If you think really staying away from all gluten is that hard, I just recently upped my food avoidance ante by starting the Primal/paleo diet. I’m just curious to see what kind of effect consuming ZERO  grains might have; weight is not a problem for me.

  24. Please ask Maggie what she thinks about the cat example. Sample of one. No control. Also, what does a cat with cancer have to do with a human who’s got a GI illness? This anecdote stands in profound opposition to rigorous application of the scientific method and sound empirical reasoning.

    Also, in the penultimate paragraph, you state “Plainly this shows the value of online health information” but apart from a short bit about Google Docs, nothing else in the article mentions online information.

    1. Sigh. The cat with cancer had nothing to do with my mother. Seriously? That’s what you took away?

      Researching *why* the vet suggested an all-meat diet (because I always research), led me to reading information on evolutionary biology, which led me to information on gluten intolerance, which led me to links between gluten intolerance/celiac and Hashimoto’s, which led me to think about my mother and her failing kidneys, not to mention her whole history. 

      And yes, 90% of the research I conducted was online. So, online research=winning. 

      Also, the way you add a “control” in self-experimentation, is that you only change one thing (food item, medication etc.), so you can isolate any changes.

      1. What you describe is akin to a crossover study where a participant receives two or more interventions in sequence, usually with a washout period in between. There’s not reason why this can’t be done as a double  blind where you take one pill ever morning either containing gluten or not containing gluten and then compare your symptom diary at the end with the actual treatment.  There’s no reason to avoid rigour in self experimentation!

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