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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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