There are lots of myths floating around the celiac universe. Some of them are based on science and others are based on flights of fancy. Ongoing celiac symptoms can be related to additional food intolerances or other issues is based on some fact. Let’s discuss.
A study was published that looked retrospectively at 20 celiac patients. All 20 had been diagnosed with refractory, non-responsive celiac disease. Each had ongoing abdominal complaints for longer than 6 months despite a strict gluten-free diet. Seven of the patients had lactose intolerance. Seven showed fructose malabsorption. Eleven of the patients had histamine intolerance. Six had signs of H. pylori infections or a combination of any of the above.
Histamine intolerance seems to play an important role in non-responsive celiac disease. Greater than 50% of the patients in this study had histamine intolerance. Histamine intolerance is thought to be due to a build-up of histamine in the body. Two enzymes, DAO and HNMT, break down histamine. The DAO enzyme is created in the intestines. If the intestines are damaged, the body cannot create the DAO enzyme and is unable to clear histamine normally. Creating a never-ending cycle of damage and symptoms. You can learn more about histamine intolerance and celiac disease here.
Challenges to this study
I do see a few problems with this study. Also, remember, I only have the summary and not the details of the study. The study could explain or provide this information, I just don’t have access to it.
Refractory celiac disease has specific diagnostic criteria. I don’t know if they were really diagnosed with refractory celiac disease or if they considered non-responsive celiac disease based on symptoms alone. If they looked at symptoms alone, many, many people with celiac disease would have refractory celiac disease. I can get on board with the non-responsive part of celiac.
Histamine intolerance has no specific diagnostic testing or methodology. It is based on diet and symptoms. While for many this is good enough, I would like to know how they figured out someone has a histamine intolerance. Again, I only have the summary, they may have gone into detail on this in the full article.
The bottom line most people diagnosed with celiac disease have some other things going on beyond celiac disease. First, heal your gut by eating whole foods. That should take care of most of it. If you are still having symptoms six months into a gluten free diet, please look at a temporary low FODMAP, low histamine, and/or lactose free diet. Once the gut heals, it seems these additional issues may resolve.