Abstract
BACKGROUND: Adolescents with celiac disease (CD) are at risk for non-adherence to the gluten-free diet (GFD). Knowledge of the GFD may impact adherence. OBJECTIVES: To examine the relationship between knowledge and adherence to the GFD in a local population of adolescents with CD. Secondary objectives were to identify information sources used to learn about the GFD and to compare adolescent and parent knowledge of the GFD. DESIGN/METHODS: Adolescents (12-17 years) with CD and their parents from local paediatric gastroenterology clinics completed an online survey containing a knowledge assessment (Gluten-Free Diet Quiz [GFD-Q]), validated adherence scale, GFD information sources, and demographic/clinical information. GFD-Q scores were categorized as “sufficient knowledge” based on correctly identifying: 3/3 gluten-containing foods, at least 4/7 gluten-free foods, and at least 4/7 foods that may contain gluten. Otherwise, scores were termed as indicating “insufficient knowledge”. RESULTS: Of 40 adolescents, 15/40 (37%) had sufficient knowledge and 25/40 (63%) had insufficient knowledge. Within the insufficient knowledge group, 14/25 (56%) did not correctly identify enough allowed, gluten-free foods. Parents scored higher on the GFD-Q (67% with sufficient knowledge). Adolescents reported overall adherence to the GFD (88%), with adherence similar between sufficient and insufficient knowledge groups (80% vs. 92%). Most helpful information sources include physicians, another person with CD, parent(s), and Google (online search engine). Apps were infrequently used (20% of adolescents). CONCLUSION: Adolescents report good adherence, but struggle with knowledge of the GFD, particularly in identifying gluten-free foods. Further research is required to explore GFD educational tools, including mobile apps and dietician-led teaching sessions.