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  • Jefferson Adams
    Jefferson Adams

    Study Shows Reasons for Success or Failure in Gluten-Free Diet

    Reviewed and edited by a celiac disease expert.

    Celiac.com 11/15/2007 - There’s a large body of evidence pointing to the importance of a life-long gluten-free diet for people with celiac disease. However, following a gluten-free diet is not always easy. Studies show that only 50% to 75% of all celiac patients are successful in faithfully following their gluten-free diets. But until now, very little has been published that indicates why this might be, or offers evidence as to the best way to succeed in faithfully maintaining a gluten-free diet.

    Recently, a team of doctors led by Dr. Daniel Leffler conducted a study of the factors that are most important in increasing the success rates for people trying to maintain a gluten-free diet. Dr. Leffler is a clinical fellow in gastroenterology at Boston’s Beth Israel Deaconess Medical Center. Dr. Leffler presented the results of that study recently at the 2007 American College of Gastroenterology’s Annual Scientific Meeting and Postgraduate Course. The results of the study indicate that support groups seem to have an important role to play.

    A team of doctors, dietitians, psychologists, and patients created a study questionnaire that included 155 questions designed to measure ten areas important to success in living with celiac disease, including the burden of the disease, knowledge specific to celiac, health care access, mood and stress factors, perceptions about adherence, reasons for adherence, social support, symptoms.

    Participants of the study were all found through biopsy to have celiac disease. A professional nutritionist assessed each of the participants for dietary adherence. Of the 154 participants, 76% were Caucasian women. Nearly 70% had at least a college-level education. The average age was 50, and they had followed gluten-free diets for an average of 5 years.

    Concerns over cost and changes in stress levels and shifts in mood were among the reasons that contributed not following a gluten-free diet. Being a member of a celiac support group (P=.008), the ease of eating gluten-free while traveling (P=.012), or while attending social functions were important factors in successfully following the gluten-free diet.

    Demographic factors like age, sex, and age at diagnosis had no bearing on successfully remaining on a gluten-free diet.

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    I also think that another hard thing to deal with is finding out you have celiac later on in life as opposed to when you are younger. When you are older and find out, you know what 'real' food taste like and also how good some of those foods taste. I personally struggle, as well as a few other people I know who have celiac, with the urge to eat your favorite foods that just don't taste the same gluten free or that you can't get gluten free. I still have yet to come to terms that those 'real' foods are completely off limits to me. It makes it even harder when I do stray that sometimes those foods do not make me sick physically, although deep down I know they are doing horrible things to my insides.

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    Guest Tracey Warburton


    I don't believe celiacs deliberately cheat. Apart from cross-contamination issues, the key to truly staying gluten free is education about the disease and knowing what products to avoid(the list is diverse with gluten hiding in products you wouldn't expect) . Reading the ingredients on products sometimes is a nightmare with having to remember what additives to avoid etc. Following a gluten free diet is easier if no processed food is consumed, but how much fresh food can one person take without being tempted by a different sensation of chewing a different food group.

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    In this globalized world of mass marketing, where products are mass produced and mass processed, with smaller specialty shops struggling against the collective power of chain restaurants, chain supermarkets, the cross-contamination issue will always exist. Gluten-free labeling is only as good as the monitoring process over that labeling. At best, gluten-free labeling and ingredient listings improve your odds of not getting sick....at best.

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    I feel researchers and others go round and round on the same topics and don't get anywhere. Celiacs are not eating better than they did before diagnosis.

    Please do a study about celiacs who consume no grains. Look at other aspects of their health and diet to understand the benefits of a no grain diet. It is my contention that many celiacs do poorly because they concentrate on replacing lost foods with other grains instead of consuming more vegetables and fruit that have more nutrients than the grains. When I found out my celiac status my body was so run down and had so many deficiencies that I could not rely on substituting grains to bring up nutrition levels, not to mention the calories they have.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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