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  • Jefferson Adams
    Jefferson Adams

    Can Researchers Measure the Factors the Make for a Successful Gluten-free Diet?

    Caption: Photo: CC--Sara Reid

    Celiac.com 12/02/2015 - A strict gluten-free diet remains the only effective treatment for celiac disease, but studies of gluten-free diet adherence have rarely used precise means of measuring data, which means that there really hasn't been much good data on long-term adherence to the gluten-free diet in the adult population.

    Photo: CC--Sara ReidSo, what are the factors that keep people on a gluten-free diet? This question has been on the minds of numerous celiac disease researchers.

    To determine the long-term adherence to the gluten-free diet and potential associated factors, a research team recently conducted a survey of adult celiac patients in a large celiac disease referral center population. The research team included J. Villafuerte-Galvez; R. R. Vanga; M. Dennis; J. Hansen; D. A. Leffler; C. P. Kelly; and R. Mukherjee. They are variously affiliated with the Celiac Center, Division of Gastroenterology, Department of Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, USA.

    Their team performed a mail survey of adults with clinically, serologically and histologically confirmed celiac disease diagnosed five or more years prior to the survey. To measure dietary adherence, the team used the previously validated Celiac Disease Adherence Test. The team then analyzed demographic, socio-economic and potentially associated factors as they relate to dietary adherence.

    Of 709 people surveyed, about half responded. Their responses showed an average of about 10 years on a gluten-free diet, plus or minus 6.4 years.

    Adequate adherence was measured by a celiac disease adherence test score under 13. Just over 75% of respondents reported adequate dietary adherence. A higher level of education was associated with adequate adherence (P = 0.002) even after controlling for household income (P = 0.0220). Perceptions of cost, effectiveness of the gluten-free diet, knowledge of the gluten-free diet and self-effectiveness at following the gluten-free diet correlated with adherence scores (P < 0.001).

    More than 75% of respondents reported long-term adherence to a gluten-free diet

    Perceived cost remains one of the main barriers to long-term adherence to a gluten-free diet. Perceptions of effectiveness of gluten-free diet as well as its knowledge, are potential areas where better information may increase dietary compliance.

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    Good article, thank you!

     

    I am so frustrated! I am disabled and unable to work. I welcome all ideas on how to stretch the dollars. I am very low income and get some assistance, but no matter how hard I try, I am not able to make this financially work. I can't afford to eat gluten-free! I do not buy expensive processed food and I do not bake, it is all just real food. Meat and veggies only.

     

    Another thing, all recipes call for herbs and spices, but I cannot find a gluten-free herb or spice anywhere, so all I use is Mediterranean pink salt. The fresh herbs they sell are $3.00 for a small amount. That is NOT affordable! Next summer I can grow some, but for now . . . any thoughts here?

     

    What are the brand names of herbs that are gluten-free, are there any I do not know about? I can't find any!

     

    I am discouraged and need help. Thanks.

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  • About Me

    Jefferson Adams 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 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.

  • Related Articles

    Alexandra  Rosenberg
    Celiac.com 06/03/2008 - I know—you are a teenager, you go out with your friends, see movies, have fun and unfortunately—have to eat with them sometimes too. I know because I’m also a teenager who is living with celiac disease, so I know what it feels like to have to say “I have an allergy, what can I eat, please try to avoid cross-contamination,” in front of all your friends. It is embarrassing and annoying—at least for me it is, and I am willing to bet that it is to some of you other teens out there too.
    Miraculously I found a way to cope, and if you are just starting to get the hang of dealing with celiac disease I can tell you that it is not as bad as you think. I remember the first gluten-free pasta I tried. It was the most disgusting thing I had ever tasted. I still can picture my mom saying to me, “Oh, don’t worry I guess you will get used to it.” I thought that the satisfaction of eating a delicious meal would be gone forever. Luckily, I experimented with different products, joined the celiac boards, and learned which mainstream and gluten-free products were best. To my amazement, I actually found foods that I liked—and dare I say maybe some that I even enjoyed more than the “regular” gluten versions.
    The next step was eating out at restaurants. I still get scared when eating out because you really don’t know what they do behind those kitchen doors. Are they touching gluten and then touching your food? Perhaps they are accidentally even putting gluten in your food. The first time I ate out my heart was racing and my head was spinning—I was so nervous that I almost walked out of the restaurant. Fortunately, I spoke with the chef who knew all about the allergy and issues of cross-contamination. I felt confident in the chef. After a nerve wracking but delicious meal I realized that I had not eaten gluten. I also realized that I could eat out, at least once in a while!
    Now, the hardest part, for me anyway, is ordering a gluten free meal when I am with my friends. I usually try to joke around and make light of the situation, while still making sure the waiter knows that I have a serious allergy and the chef needs to be attentive. Usually my friends and everyone else just say that they could never live without pasta and pizza and they don’t mind my long orders. Another tip for ordering out is to simply do like you would do any other time. Tell the waiter your problems, ask to speak to the chef, and pretend like this is any other gluten-free meal. There is no reason to be embarrassed about having to spend a little extra time on your order to make sure that you don’t get sick.
    Yes, the disease is hard to deal with sometimes, but, for the most part it is easy to resist those gluten temptations by remembering what happened the last time you ate those items, and how you will get afterwards. If you are just starting out on a gluten-free diet, be patient and remember that you are not alone. Also, realize that you are special and that celiac disease is just a part of you that you will learn to love and have fun with. Soon, you will realize that it is not so bad after all. I honestly would not give up having this allergy because it is something I have grown to love—I am a proud to be gluten-free!


    Joanne Bradley
    Celiac.com 06/13/2008 - Students embarking on the college path often ride a roller coaster between sheer unadulterated excitement and deep-in-the-stomach dread of meeting new people and challenges. For the gluten free college student, a whole world of eating choices will await them in all sorts of different social situations. It is a new cornucopia of responsible choice.
    Perhaps the first challenge will be establishing a relationship with the people who manage the food services on campus. Although public understanding of Celiac disease and gluten intolerance are on the fast track, the level of training for gluten free food service is still on the slow track. A thorough understanding on the part of food management usually comes through one or more managers having a relative with the condition. Liability issues still concern corporate management of food service. Until the term gluten-free is clearly defined through FDA labeling laws, many companies are hesitant to establish true gluten free programs.
    After 30 years in food service, I can personally attest that most people in the food service profession want to provide good and healthy service to their customers. Many managers work much more than the typical 40 hour work week in just that endeavor. Making customers happy is an integral part of being in the hospitality industry. However, the biggest problem presented by the gluten free dilemma is the widespread contamination of wheat in products where it naturally should not be. The processed food additives in most commercial mixes and flavorings are a huge roadblock to immediate implementation of gluten free programs. Manufacturers are getting the message that customers want gluten free products and will provide them for commercial clients in time.
    Working with food service on cross contamination issues should be a pleasant experience. However, it will be a continual learning process for both food service management and the gluten free student. Campus food service is one of the primary employers for students on, or near, college campuses. Flexible hours and close location form a workforce that is beneficial for both students and employer. The temporary nature of food service staff may result in a different person on a food station much more often than would happen in a restaurant. The server may just be starting their full round of training and may not be knowledgeable in gluten free food handling.
    The gluten free student will have to be vigilant about cross contamination and talk frequently with the food service management. They will also need to have patience in working with service and cooking staff so that all may learn and benefit. The term “gluten free ambassador” is descriptive of being on the front line of changing how food is prepared and served for all gluten free students on college campuses. Just remember, college food service wants you as a customer. They will try to meet your needs and will learn along with you.
    Another opportunity for education and learning interpersonal skills will be with your roommate. I have never seen a spacious dorm room. The high value of real estate on most college campuses extends to the dorm rooms as well. There will not be a lot of room for foods or duplicate cooking appliances for cross contamination purposes. You should plan to discuss your needs well in advance with the University Department responsible for housing.
    The new college student will be presented with daily opportunities to go off the gluten free diet. However, the biggest temptation will be the variety of foods available to you in the college cafeteria. Seeing gluten-laden foods for the first time (for some students) can be a powerful draw to experiment and experience. It would be wise to create an action plan to prevent lapses into the gluten-filled world. Knowing that you have gluten free foods available in your dorm room or apartment to curb a snack attack is essential. You must be firm in your mind that your food choices are the same as any other person – you just actively choose the gluten free items.
    The college experience is a time of tremendous personal growth. It is also a time of great learning and life long friendships that shouldn’t be sidetracked by illness. Gluten free students will continually test and create new facets of a lifestyle that is only beginning to be felt on most campuses. Plan ahead and carry patience in your back pocket.

    Kristen Campbell
    Celiac.com 01/03/2009 - Recently on a gluten-free forum, I found a post asking for advice on what to do after a woman had accidentally consumed a large amount of gluten.  After unknowingly eating from her daughter’s takeout box, the woman had realized her mistake and was simply devastated to have broken her diet and subjected herself to the old, too-familiar symptoms that were on their way.
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    This whole subject inspired some research on my part.  I first consulted my extensive gluten-free library, which led me to one solitary, repetitive answer: do not eat gluten.  In a world where doctors and authors alike are so concerned that their advice on the subject will lead people with gluten sensitivities to forgo a gluten-free diet in favor of a “band aid” of sorts, that finding a documented recommendation is near impossible.
    These experts are right to reinforce the importance of maintaining a gluten free lifestyle, and the fact that there is no “cure” for gluten intolerance and celiac disease (other than complete avoidance of gluten from wheat, barley and rye).  But mistakes do happen, and from time to time people do get "glutened,” and when they do, which action is best?
    No matter what the size is of the offending dose of gluten, all experts agree, inducing vomiting is too dangerous and disruptive to the body to be considered.  But there is one option that at least two noted experts in field of celiac research agree upon: enzymes.
    When I contacted the renowned Dr. Kenneth Fine of EnteroLab, and asked him if perhaps a dose of enzymes that are designed to break down gluten might help, he had this to say: “The good news is that everyone will survive and recover from the gluten exposure.  The enzymes you mention might help, but not completely, unless they consumed at the same time (as the gluten) for best results.”  And like all good doctors, he did go on to warn, “Avoidance is still the best policy.”
    Shari Lieberman, PhD, CNS, FACN and author of The Gluten Connection very humbly admits that “gluten slips happen.”  She also devotes a couple of pages in her book to research conducted using digestive enzymes to help manage those occasions when gluten does make its way into your diet, citing a research example in which “The study demonstrates that enzyme therapy can substantially minimize symptoms in people with celiac disease who are exposed to gluten.” 
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    Ultimately, gluten sensitive individuals should recover from one accidental “gluten slip” here and there, and keeping some digestive enzymes handy to help cope with such an accident is not a bad idea.  But do keep in mind that repeated offenses, even the most minute, will damage your body and prevent it from healing.  Enzymes help treat the symptoms, but only complete avoidance of gluten can treat the disease.


    Jefferson Adams
    Celiac.com 12/05/2014 - To remain healthy, people with serious gluten intolerance, especially people with celiac disease, must avoid foods containing gluten from wheat, barley, and rye. Accordingly, gluten detection is of high interest for the food safety of celiac patients.
    The FDA recently approved guidelines mandating that all products labeled as “gluten-free” contain less than 20ppm (20mg/kg) of gluten, but just how do products labeled as “gluten-free” actually measure up to this standard?
    Researchers H.J. Lee, Z. Anderson, and D. Ryu recently set outto assess the concentrations of gluten in foods labeled "gluten free" available in the United States. For their study, they collected seventy-eight samples of foods labeled “gluten-free,” and analyzed the samples using a gliadin competitive enzyme-linked immunosorbent assay. They then calculated gluten content based on the assumption of the same ratio between gliadin and glutenin, testing gluten levels down to 10ppm (10mg/kg).
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    However, 16 samples, over 20%, contained gluten levels above 20 mg/kg, ranging from 20.3 to as high as 60.3 mg/kg. Breakfast cereal was the main culprit, with five of eight breakfast cereal samples showing gluten contents above 20ppm (20 mg/kg).
    The study does not name specific brands tested, nor do they indicate whether tested brands are themselves monitored by independent labs. Still, the results, while generally encouraging, show that more progress is needed to make sure that all products labeled as “gluten-free” meet the FDA guidelines. Until that time, it’s a matter of “caveat emptor,” or “buyer beware,” for consumers of gluten-free foods.

    Source:
    J Food Prot. 2014 Oct;77(10):1830-3. doi: 10.4315/0362-028X.JFP-14-149.

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