All patients seen at our clinic are offered participation in our Celiac Disease Research Registry, which allows us to review and extract de-identified information from medical records for research—our team uses this information to learn more about trends in the presentation, diagnosis and treatment of gluten-related disorders.

People with celiac disease who do not improve on a traditional gluten-free diet (GFD) after 1 year and continue to have elevated antibody levels, intestinal damage and/or symptoms are diagnosed with nonresponsive celiac disease. Historically, immunosuppressive (drug) therapy was prescribed for these individuals. Dr. Fasano, however, attributed the ongoing disease activity to gluten exposure from the diet, even with compliance to a strict GFD. Therefore a modified version of the GFD called the “Gluten Contamination Elimination Diet” (GCED) was developed to remove even the minutest amount of gluten. The GCED is done under medical supervision with a knowledgeable physician-dietitian team to ensure proper use of the diet and that proper nutrition is maintained throughout. Additionally, the diet is only implemented for a short period of time (3-6 months) and all patients eventually return to a standard GFD.

To review the effectiveness of the diet, researchers at the Center for Celiac Research and Treatment utilized our Research Registry to review the medical records of patients to whom the GCED was recommended. We found that 42% of patients who adhered to the diet experienced resolution of symptoms and healing of the intestinal surface. These findings demonstrate that drug therapy is not always required when patients with CD are found to have ongoing disease. Instead, adherence to the GCED eliminates any chance of gluten getting into the body, and thus allows the immune system time to rest and ultimately turn “off.”

Our research team is currently evaluating this diet, and other treatment options, in children with CD and persistent intestinal damage despite adherence to the GFD. Specifically, our team is focusing on which treatment option has the least significant impact on a child’s quality of life and is most successful at alleviating symptoms.