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  • Diana Gitig Ph.D.
    Diana Gitig Ph.D.

    How Happy Are You on a Gluten-free Diet?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 07/18/2011 - People with celiac disease are relatively lucky; a simple change in diet, without any drugs, can completely reverse all symptoms in most patients and causes no side effects. But maintaining a gluten free diet is, of course, far from simple. A number of treatment options are in varying stages of development, but no one has asked celiac patients what kind of treatment they would prefer to a gluten free diet, or if they would even prefer one at all. A recent study in the UK did just that. It found that over 40% of celiac patients are dissatisfied with the gluten free diet.

    Aziz et al. gave a questionnaire to 310 celiac patients and 477 controls. The first section measured their satisfaction with the gluten free diet; the second measured their use of complementary or alternative medicine by asking if they took popular oral supplements (multivitamins, kava, Echinacea, etc.); and the third assessed their views of novel therapies being developed to treat celiac disease. These include a vaccine that would be injected and would allow the consumption of unlimited gluten; peptidases or zonulin antagonists that would enzymatically degrade gluten or inhibit intestinal permeability, respectively, and would be taken orally in case of accidental or periodic ingestion of gluten; and genetic modification of wheat to reduce its toxicity.

    Although more than 40% of celiac patients were unhappy with the gluten free diet, they did not use complementary or alternative medicines with more frequently than controls. This suggests that they do not view these as viable alternative treatments to a gluten free diet. Most celiac patients - 42% - said that they would be interested in a vaccine that would allow them to eat unlimited gluten, while 35% said they would prefer anti-zonulin and 23% said they would like peptidases. Both of these latter therapies would not necessarily allow for healing of the small bowel mucosa like a gluten free diet does, but either could be taken as an adjuvant or to protect against minor or occasional ingestion of gluten. Of the potential novel treatments, all patients ranked genetic modification of wheat as their lowest preference.

    Adherence to dietary advice is among the lowest of all kinds of guidance given by doctors. Among celiac, strict adherence to a gluten free diet varies from 96% all the way down to 36% among different populations. As these British researchers demonstrated and noted in their conclusions, "patients with coeliac [sic] disease are keen to consider novel therapies."

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    I agree, every invasive antidote has side effects, and the wheat and flours that are used in food production is no longer a grain or fiber. I also have a stand against hormone driven dairy products and refined sugar.

    Eating in restaurants is so risky, aside from cross contamination the staff does not want to be asked details of how food is prepared. Most of my clients choose to eat gluten and dairy free because they feel so much better doing so.

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    I have been gluten-free for only one week and it has basically turned my entire life around. All my pain and suffering...mostly gastro issues are gone like the wind. It actually only took 3 days. My life is back and I would not risk ever eating that crap again. Maybe I will miss it in the future, but for now the pleasure is not worth the pain.

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    I agree with so many of the comments made above in that I am not only perfectly happy with my gluten free diet, I am nothing but thankful that I now know how to keep myself healthy. I was horribly sick, and now I'm well--what's not to love? While I would happily keep a stash of the pills to prevent the occasional "glutening" (which has happened almost exclusively in restaurants during the 6 months in which I've been gluten-free), I'm not about to let the medical powers that be do anything else to my immune system, nor do I think further genetic modification of our food supply is a good idea.

     

    I suspect the long and winding path to my diagnosis may lead to my outlook. I was symptomatic for 12 years with debilitating symptoms and told repeatedly it was all in my head and/or I was making it up for attention and then told antidepressants might help for my mental ... er I mean, GI issues (since when is diarrhea a mental illness ... but I digress). The fact is, I just don't trust the doctors enough to allow them to benefit from my illness anymore.

     

    I wonder if the researchers looked at severity of symptoms prior to diagnosis and/or length of illness prior to diagnosis and how that affected perception of the gluten-free diet?

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    The strongest sentiment in these replies seems to be that actually the apparent 'sacrifice' of living without gluten is far outweighed by the almost instant improvement in health experienced once gluten is eliminated from the diet. I have been gluten free for 3 years now and would not dream of putting myself in the hands of the medical profession to deal with this condition (it's not a disease).

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    To characterize the need to adhere to a gluten-free diet as a 'simple' change is to demonstrate a lack of appreciation for the degree of disruption of a life including of busness and social relationships having to adhere to the diet causes. It's manageable at home; it's even quasi-manageable at a job to which one commutes daily and to which office I can bring food from home and/or can stock a fridge with safe foods. To spend a few days a week living in a hotel and working in lower Manhattan is torture. Same salad from the same one, quasi-safe take-out every day for lunch. At the end of a long day of work it's back to the hotel then onto the subway to head uptown to one of a small number of restaurants offering gluten-free menus. Snack on Amtrak? Not a chance unless a package of peanuts floats your boat. I stick with it religiously however it's a miserable business.

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  • About Me

    Diana received her B.A. in Biochemistry from the University of Pennsylvania, and then a Ph.D. in Cell Biology and Genetics from Cornell. Now she is a freelance science writer and editor in White Plains, New York.  Her son was diagnosed with celiac disease in 2006, at the age of five, and she has been keeping her family healthy by feeding them gluten free treats ever since.

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