In the Celiac Disease Program at Boston Children’s Hospital, our work focuses on the diagnosis, monitoring and management of celiac disease. Celiac disease is different from most other diseases because the only available treatment is lifelong adherence to a strict gluten-free diet. We are especially interested in the natural history of celiac disease and what happens after the diagnosis and the recommendation to follow a gluten-free diet. We have a variety of projects looking at the epidemiology of celiac disease in children. These include studies of the relationship between celiac disease and other autoimmune disorders, and studies of complications of celiac disease, such as non-responsive celiac disease which occurs when patients do not respond as expected to a gluten-free diet.
Our overall aim is to improve the quality of life of patients with celiac disease and their families, so we are also very involved in education on disease management and maintenance of the gluten-free diet. We have developed several innovative educational resources, including group dietetic counseling classes, DVDs for families and for college dining services, a series of peer-to-peer videos for kids with celiac disease, and a comic book entitled “Amy Goes Gluten-Free.” Currently, we are exploring how and when children learn the skills to follow a gluten-free diet independently. We are also developing dietary assessment tools for dietitians and investigating new lab tests to assess gluten-free diet adherence so that we can better help people with celiac disease to avoid gluten exposure.