Introduction
Despite the only treatment for celiac disease (CD) being a gluten-free diet (GFD), there is no standardized way of educating patients on how to follow a GFD in the United States. This study aimed to evaluate what our patients want to learn about a GFD during our monthly group gluten-free diet education session (GFDES) and where they currently get their information.
Methods
Parents of newly diagnosed CD patients completed a brief survey on information sources used since diagnosis and topics they wished to learn about regarding the GFD. After the GFDES, parents were sent another survey with free text responses to ask for feedback on the session.
Results
40 parents completed the first survey and 31 completed the second. Most families received GFD information from medical providers (77.5%, n=31/40), followed by social media (47.5%, n=19/40), online blogs (37.5%, n=15/40), and “other” sources (52.5%, n=21/40), including family members/friends (20%, n=8/40), Google searches (20%, n=8/40), advocacy organizations (20%, n=8/40), and AI Chat Bots (10%, n=4/40). Families were most interested in learning about dining out (n=13/40, 32.5%), label-reading (n=13/40, 32.5%), nutrition on a GFD (n=8/40, 20%), and cross-contact (n=7/40, 17.5%). After the GFDES, families gave favorable feedback on learning to read labels (n=14/31, 45.2%) and the ability to ask questions (n=9/31, 29%), but wished more time had been spent navigating dining out (n=5/31, 16%), fostering community (n=3/31, 9.7%), and establishing more of a balance between content for children vs. content for parents (n=3/31, 9.7%).
Conclusion
Our patient population largely uses reliable resources for information about CD and the GFD; however, less reliable sources were still widely used, raising concerns for incorrect information being obtained. Families’ wants and needs for the GFDES differed widely, likely due to varying prior familiarity with the GFD.