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    Jefferson Adams

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

    Jefferson Adams
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    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.



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    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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    It's interesting but a lot also has to do with rechecking the person and doctors telling them have have an allergy to these foods but not with celiac disease--why would doctors say this ? Because some people get retested and titers are normal after following a stringent gluten-free diet.

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    The main reason for non adherence is the issue of gluten cross-contamination. Especially in food products you wouldn't imagine would have any gluten in them. As well as being told you can have a little bit. I can have none whatsoever period. Manufacturers and the FDA want to make it easy to produce gluten free, however, they do not want to go all the way and have no cross-contamination because it is difficult versus concern for the health of the people they are selling their product to or in the FDA's case to protect from manufacturers looking for the easy way out. Therefore gluten free labeling is a total farce and cannot be relied upon for a truly gluten free diet.

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    I agree that in my experience cross-contamination of supposedly gluten-free is the major challenge to remaining healthy. I now avoid products with milled grains of any kind.

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    My problem is my son has celiac (age 9) but has no symptoms. We had him tested because his grandmother had it. It's hard to stick with gluten free when you don't see any bad effects from eating gluten. I need to always remind myself that even though we don't see it, the gluten is hurting him. Plus, after going gluten free for less than a year he went from the 20 to 25th percentile for height and weight to the 50th for both. So it's got to be working, right? My mom was really sick for many years before being diagnosed. Then many years later she had chemo for lung cancer. The celiac symptoms disappeared and she started eating wheat again. She developed peripheral neuropathy which she blamed on the chemo but I have always felt it was due to the celiac and her starting to eat wheat again.

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    I feel that cross-contamination is the major challenge. Not only in foods labeled as gluten free, but in restaurants, friends' homes and in my own kitchen. A gluten free menu is only as gluten free as the kitchen staff is trained in cross-contamination issues. Well-meaning friends usually do not have a clue what it truly means to eat gluten free. It took me a couple of years to fully understand that I needed to have my own toaster, my own butter dish, microwave, etc.

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    Lori you are dead on about the 'cross contamination'. Eating at home is not a problem at all for me. It is when I eat out the gluten free food that is a problem. The replies are a full spectrum from being on top of everything to not even really knowing what gluten actually is. Does the restaurant use the same utensil with the breaded...or a completely separate one? I want to be 100% compliant with this diet but when I eat out it is out of my control and this is what aggravates me!

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    The cost of gluten free products-at least twice the cost; the taste does not compare; the ease of purchasing gluten free products; the ease of purchasing already prepared gluten free products; the social aspect - attending an event that does not offer any gluten free foods or as mentioned above, there was cross contamination with them.

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    I agree that cross-contamination and poor information on ingredients are the biggest problems for me. This article is fine--the study makes a poor assumption that people voluntarily 'cheat' on their diets, and that this is a major problem. A study of the main paths of contamination and how to avoid them would be a lot more useful.

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    A good parallel study would be to analyze the social impact of the disease. I am very careful to be gluten free, but the lack of options for going out to lunch (another salad with grilled chicken, anyone?) makes it really hard to socialize with my professional colleagues.

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    Diagnosed in May of 2007 with Celiac disease I have been living gluten free as much as possible. Eating out is still the biggest challenge. My wife a fantastic cook has experimented with gluten-free flours enough to furnish us with a variety of meals which hardly vary from a normal diet but are totally healthy for me. Two of our three children all adults are showing some symptoms of being gluten intolerant.

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    Diagnosed 2 years ago with celiac disease, and 1 year ago with dermatitis herpetiformis in my late 50's. Main reason for non-adherence among celiacs I know is, no immediate symptoms! Second is denial. Third is mis-information--there's an amazing glut of mythology out there. Gluten exposure's another story. I've been 'glutinized' 3 times in 2 years--cross contamination & imported rice. I don't cheat. All I have to do is remember how rotten I felt--and will feel again. Also, I have DH so there's instant pay-back right there. I get frustrated (understatement!!) with the diet but I don't get tempted.

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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 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. 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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