Assessment of Gluten Exposures in Children with Celiac Disease

Abstract BACKGROUND: Celiac Disease (CD) is one of the most common chronic diseases of childhood. A strict, lifelong gluten-free diet (GFD) remains the sole treatment for CD. Reports of accidental or intentional ingestion of gluten are common, but little is known about the sources or context of such exposures. OBJECTIVES: We sought to ascertain the self-reported causes for gluten exposure for children with Celiac Disease. DESIGN/METHODS: Parents of children with biopsy-proven CD followed at McMaster Children’s Hospital were asked to review a 22-item questionnaire listing sources, situations and causes of gluten exposure for their child. The questionnaire encompassed both intentional and unintentional gluten exposures and was developed through consultation with Registered Dietitians and Faculty in the Division of Pediatric Gastroenterology at McMaster Children’s Hospital. Children independently completed a similar 21-item questionnaire adapted for pediatric use. Participants were invited to describe any additional sources or circumstances leading to gluten consumption not captured in the questionnaire. RESULTS: A total of 123 families participated in the study with a median of 32 months on a GFD. A minimum of one cause of gluten exposure was selected by 65% of parents and 60% of children. Restaurant dining was identified as a source of gluten consumption by 39% of parents, due to a lack of knowledge of the GFD by restaurant staff or poor labeling of menu items. Other commonly selected items on the parent questionnaire included: difficulty while traveling (13%), to avoid exclusion at social events (12%), and a lack of negative symptoms following gluten exposure (9%). Few parents identified cost (2%), or the availability of gluten-free food as a concern (5%). Children most commonly identified restaurant eating (32%), and the lack of any negative symptoms from eating gluten as the main causes of gluten exposure (14%). In this study population, 11% of children acknowledged consuming gluten because they felt left out at either home, school or with friends. CONCLUSION: This study provides information about the common causes of gluten exposure for children with CD in Ontario, Canada. Restaurant dining and travel were the most commonly identified sources of gluten ingestion. Our study highlights the need for improved menu labeling and education of restaurant staff, requiring both policy changes and dialogue with food service industries. While availability of gluten-free products has greatly improved, exclusion from social activities remain a concern for both children and their parents. Further qualitative studies may build on these identified themes to better understand challenges families face with the GFD.