There are many scary manifestations of celiac disease / gluten intolerance that I’m thankful not to have personal experience with. Gluten ataxia, for example, is something I can only read about during the day, with the lights on, when I’m not alone.
Another is non-responsive celiac disease, also called refractory celiac disease. These are cases of celiac disease in which the symptoms do not disappear despite the adoption of a gluten-free diet. To think of cutting out all those foods, training oneself to ask all those questions — and then not feeling any better! I can only begin to imagine how incredibly frustrating it must be.
Interestingly and (I think) hopefully, a new study indicates that non-responsive celiac disease may be far less common than we previously believed.
According to celiac.com’s review of the study, researchers in London examined 112 patients over the course of two years. All the patients had been referred to a gastroenterology clinic because of non-responsive celiac disease.
The complete history of each patient was taken down, along with blood work including a tTG antibody screen, and the patients met individually with a specialist dietician. Many patients also received biopsies of the small intestine, and some received a colonoscopy, lactulose hydrogen breath testing, pancreolauryl testing and/or a computed tomography scan of the abdom
Fascinatingly, only nine were determined to have refractory celiac disease.en as well.
Twelve of the 112 patients were determined not only to not have non-responsive celiac disease — but not to have celiac disease at all. It was also determined that 45 of the patients were not actually on a gluten-free diet; 21 of the 45 admitted to not following the diet strictly and 24 were accidentally consuming gluten. All of them improved after being placed on a sufficiently strict diet.
Eleven were diagnosed with and treated for microscopic colitis and a further nine for small bowel bacterial overgrowth. Ten were determined to have irritable bowel syndrome, and a range of (sometimes-overlapping) causes like anorexia nervosa, lactose intolerance, HIV, and medication-induced diarrhea accounted for additional diagnoses (you can see the full chart here).
Perhaps most interestingly or mo
st easily-applied to our own lives, “the commonest culprit for inadvertent intake was malted breakfast cereals, although beer, cooking sauces, pizza, and biscuits – the latter two of which were clearly labeled as containing gluten – were also identified as sources of continued gluten ingestion” (World Journal of Gastroenterology for the full study).
Of the many takeaways it’s possible to get from this study, perhaps the largest is the importance of meeting with a properly-trained nutritionist, dietician, health coach, doctor, etc. to review your diet. Gluten is confusing! No need to try and tackle it alone.