Background: Strict adherence to a gluten-free diet (GFD) is the only effective treatment for celiac disease (CeD), yet maintaining a GFD is especially difficult for children in school settings, where limited gluten-free (GF) options and social pressures are common. Despite these challenges, research on the impact of school environments on GFD adherence is limited. This mixed methods study examines the availability of safe GF food, GFD adherence, and CeD-specific quality of life (QoL) in school settings amongst students with CeD.
Methods: Participants included Stanford Children’s Health patients (ages 4–17) enrolled in California schools with a confirmed CeD diagnosis. Surveys assessed school-specific GFD adherence behaviors and CeD-specific QoL (CDDUX). Higher CDDUX scores indicate better QoL. Recruitment of participants and focus groups with students are ongoing.
Results: Currently, 99 students have completed surveys (54.5% female, median age 12 years). Of the 87 students who attend schools where food is provided, 62% report poor or nonexistent safe GF options. Almost half (43.3%) of students with CeD who attend public schools where food is provided (N=67) report nonexistent safe GF options. In schools where food is provided, 49.4% of students with CeD are considered nonadherent to the GFD (based on food sharing practices, eating gluten on purpose or by mistake). Students with CeD who are considered adherent to the GFD report significantly higher mean CDDUX scores (N=87, t(85)=2.32, p=0.023).
Conclusion: There is significant room for improvement in facilitating increased availability of safe GF food and adherence to the GFD in school settings. Future directions include recruiting school personnel to participate in surveys and conducting interviews examining food handling habits and experience with dietary accommodations. These integrated findings will address a critical gap in support mechanisms for students with CeD and inform the development of structured, evidence-based resources for families and school personnel.