Question:
My question is both behavioral and medical as, we see extreme behavior induced by soy and/or gluten. Our 21-year-old is a very high functioning person and is wonderful. However, we are seeing increased aggressive and dangerous behavior and it is almost always triggered by his eating soy or gluten. We see a Dr. Jekyll and Mr. Hyde transformation that can last from 1 hour to 18 hours. It seems to be getting worse all the time. We want him to be as independent as possible but just cannot see how this can happen under these conditions. If he were to act out in public, it is significant enough that we fear he will be arrested.
Answer:
One of the guiding precepts for our evaluation and treatment of people with Down syndrome (DS) is: “Any and all behavioral change should be considered a possible means of communication.” In other words, many people with DS (and many people without DS) will present with a change in behavior (or mental health) in response to physical health problems.
We have seen that celiac disease can contribute to behavioral changes. Celiac disease is an auto-immune condition caused by a sensitivity to gluten, a protein in wheat, barley, and rye. The immune system is triggered and attacks and damages the small intestine. Our Resource Library has several resources to learn more about celiac disease.
The treatment for celiac disease consists of eliminating gluten in the diet. In our experience, many people with DS can learn about foods that are gluten-free and participate in following the diet.
Celiac disease is more common in people with DS. A study that reviewed and analyzed multiple studies reported that 5.8% of individuals with DS have biopsy-proven celiac disease. Similarly, in a cohort study we did at the Adult Down Syndrome Center, 5.4% of the individuals with DS had celiac disease. This was 18 times more common than in people without DS.
The physical symptoms, particularly in people with DS, may be subtle to someone observing the person with DS. Whether the symptoms are subtle or not, they may lead to the person feeling poorly. Particularly when the individual cannot verbally express their discomfort, they may “communicate” it via a behavioral change. I refer to this as an “indirect effect” on mental health.
It is not known at this time whether the triggering of the immune system in celiac disease has the potential to have a “direct effect” on a person with DS’s brain or mental health. However, a 2020 study did support this hypothesis in people without DS.
Whether the effects are indirect and/or direct, people with DS may have significant psychological effects associated with celiac disease. For example, these two articles describe individuals with DS who developed psychoses with celiac disease: article 1 and article 2.
This article provides some additional information about celiac disease including how Megan, a woman with DS, independently follows her gluten-free diet.
For many years, we have been impressed and encouraged by many of our patients being independent with compliance with a gluten-free diet. Many of the individuals with DS seen at our Center have a real understanding of the diet and follow it precisely. Some use small guidebooks. Apps on gluten-free foods are also now available but we have not had a lot of patients use them at this time to make a good recommendation on which app to use. This website describes some good apps for following gluten-free diets. We recommend talking to other people with DS and their families to see what app they may find beneficial for people with DS. Factors such as reading ability, ability to use apps, and other skills may all contribute to the use of apps and the choice of which app is used.
The effect of eating soy on people with DS is not as well understood. We did find an article on people with DS being “overrepresented” in a study on food protein induced enterocolitis syndrome (a form of food allergy). A page on the Johns Hopkins website has some information on soy-free diets.
Paper or electronic resources can often be more easily used to understand which foods to eat or purchase while at home or grocery shopping than at a restaurant. To help with choices at a restaurant, some individuals will review the menu prior to going out to eat, make food decisions ahead of time, and then select those choices at the restaurant. Online menus have been very helpful for people with DS trying to make healthy choices while eating out.