Complete adherece to gluten-free diet still low

9 Responses to “Complete adherece to gluten-free diet still low”

1. Ann Mittelstaedt on June 18th, 2009 5:48 pm

   This does not ring true with my experience. Some thoughts:

   1) In this study, how is non-adherence defined? If it is determined by seeing if antibodies are still present in the blood, it is possible that the patient intended to remain gluten-free but was inadvertently exposed by hidden gluten or cross-contamination — a quite common occurrence.

   2) It appears that the study is a review of literature rather than primary research.

   3) It is not clear from the abstract whether there was any differentiation made between symptomatic and asymptomatic celiacs. However, the ‘Background’ statement suggests that perhaps the study focused on the latter. This would certainly have a strong effect on the results.

   4) For celiacs with symptoms, I suggest that it is rare to find the level of non-compliance reported in the study.
2. Cynthia Schuck, Specialgourmets on June 18th, 2009 8:05 pm

   Hi Ann,

   Here are some more details about the study:

   The study was a literature review (from 1980 to 2007), in which the researchers searched Embase, Medline, Pub Med, Psychinfo, Cinahl and the Cochrane library. Papers were excluded if they combined data on children and adults or if celiac disease was not the primary illness under study. Papers relating to children only, those published in a language other than English and those not involving primary studies were not considered.

   The 401 abstracts were reviewed by the authors to identify those which had as their main aim to examine the factors associated with adherence to the gluten-free diet by celiacs. 38 studies fulfilled the inclusion and quality criteria for the review.

   The measures of adherence in the studies reviewed included self-reports, dietary interviews: in such cases, adherence was defined as a discrete variable (strict, partially or fairly strict, and non-adherent). Some studies considered strict or fairly strict adherers to be “adherent” whereas others excluded those who were ‘fairly strict’. These categories were either defined prescriptively, e.g. as “less than one serving of gluten per week” or an estimate of milligrams of gluten ingested, or else by statements such as “adheres to the diet most of the time”.

   There were some studies in which adherence was defined in relation to histopathology or serological tests (hence the possibility of a larger overall proportion of ‘non-adherence’ as you suggest).

   Also, the study does not distinguish between celiacs with and without symptons, thus indicating an additional source for the differences with your findings.

   Cynthia
3. kb on June 19th, 2009 12:46 pm

   The non-compliers obviously don’t get the severe symptoms that the Celiac’s I know get! For diagnosed Celiac people to still be too lazy to implement a 100% strict GF diet, they either have mild symptoms that are easy to ignore or are the asymptomatic crowd! Crippling joint pains, bone pains and hemorrhagic bloody noses would more than likely induce compliance in most patients—regardless of
   “cognitive, emotional and socio-cultural influences”. In plain English—-No Pain, No Gain–i.e. if you are very sick at diagnosis, and eating GF makes you better, you are more likely to comply with the diet regardless of what your friends and family think!
4. Dawn Pilney on June 20th, 2009 2:46 am

   I find it really annoying that they have characterized those who are non-intentionally exposed to gluten as being “non-adherent” with the gf diet. That choice of words implies people are not making every effort to be strictly gf. It reeks of blaming the victim. We are extremely careful with our son, but he has gotten accidently exposed by situations as unlikely as participating in gym class (Gym=cafeteria) after lunch doing activities that involved hands on the floor, and then putting his hands in his mouth (because he’s a kid! –2X last semester). We only attempt to eat at restaurant very rarely and he has been exposed in restaurants that were supposed to have been able to handle gf diets. He was exposed at a birthday party when another excited little boy was waving his pizza in the air as he was talking, apparantly scattering crumbs on my son’s gf food. Would we only be properly adherant to the gf diet if we withdrew him from gym class, never, ever went out to eat, and never allowed him to eat in the presence of other children?
5. Dorina on June 20th, 2009 7:18 pm

   I find intentional non-compliance by diagnosed celiacs hard to believe for those who are highly symptomatic. Kind of hard to ignore crippling diarrhea and cramps that bring one to their knees, migraines, zero stamina, and be able to function in the real world today. In the next study, it should be broken into 2 categories; those who are asymptomatic and those who are symptomatic. A third category might be added for those who are highly symptomatic. It appears this study is a review of articles written by researchers, not the research paper(s) itself. Remember your mother telling you to take everything with a grain of salt, meaning you can’t believe everything you read as gospel, especially in this new age of the internet. It mentions somewhere this study ran from 1982 thru 2000, a huge span of time in very early celiac knowledge days, and lack of accurate, readily available education to patients could be a factor here too for that time period as well.
6. Cynthia Schuck, Specialgourmets on June 21st, 2009 10:41 am

   Ann, Dorina, Dawn, Kb:
   Yes, symptomatic celiacs should be definitely distinguished in a separate group from those without symptons (or with only mild symptons) for this kind of study. Also, intentional and non-intentional compliance should be analysed separately. It would be also useful to analyse compliance as a function of time (year in this case), as you suggest Dorina.
   these were very appropriate remarks on the study, we will write to the authors of the study describing your suggestions.
7. The latest number of our magazine is out! : Restaurants, Hotels and Shops for Celiacs and Allergics on June 22nd, 2009 2:00 pm

   [...] Complete adherece to gluten-free diet still low [...]
8. Roger George on July 17th, 2009 3:07 pm

   I think that being able to cook, having the time to cook, and an interest in cooking is the answer to eating well as a Coeliac.

   I understand the problems of having to work and how this leaves little time for cooking. But I do feel that many young people have never had to cook or have no interest in cooking as they have been brought up in a society where ‘ready meals’, ‘Junk food’, ‘eating out’ and ‘grazing’ are the norm. This is OK if A. you can afford it B. manage to stay fit and well on such a diet and C. are not a Coeliac!

   I honestly believe that if I could not cook and did not enjoy cooking and had to rely on the above food sources I would simply not be able to adhere to a strict GF diet.

   My son, who is not a Coeliac, will often open our fridge.., gaze at the contents for a few seconds.., then open the pantry and, again, gaze at the contents for a few second, close the door and announce ‘there is nothing to eat in the house’. This is never true! What he means is “there is nothing I can eat without any cooking’, and this is quite different!
9. Daniela Magozzi on July 21st, 2009 2:47 pm

   I believe that a lot of the ‘non-adherence’ as defined in this lit review/study seems to come from a lack of education and understanding the need to plan your meals ahead of time:

   “The ability to follow the diet when travelling, dining out, at work or at social events has been found to be significantly associated with adherence. Membership of an advocacy group and regular dietetic follow-up also seemed to increase the likelihood of compliance with the diet.”

   It takes a significant amount of research to figure out how to not only be GF at home, but out of the home and on the go, this is where people (unintentionally usually) get ‘glutenated.’ This is why having some sort of dietetic follow up and being part of an advocacy group help people avoid the unintentional ‘non-adherence’, i.e. crumbs flying in your food, etc.

   Education is so key when it comes to CD or any other chronic health condition!

   Great article, thanks for posting it. It shows a lot of implications for really important and helpful further research as others have already noted.

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