Gluten-free schooling: Navigating challenges and triumphs for children with celiac disease

Celiac disease (CeD), an autoimmune disorder triggered by gluten ingestion, induces intestinal inflammation and varied symptoms. Treatment entails a strict gluten-free diet (GFD), posing challenges for students, especially in schools with limited food choices. Nonadherence worsens symptoms, yet research on CeD's impact on students is scarce.

The CeliacKIDS study, conducted across 11 United States academic medical centers, evaluated gluten exposure risk in pediatric CeD patients via a cross-sectional survey from August 2020 to August 2021. Participants recruited from treating institutions were approved by respective Institutional Review Boards.

One hundred and sixty children aged 5-18 (65% female, 34% male, 1% other) participated. Only 12% had GF food options at school, 31% brought their own for celebrations, and 41% lacked gluten free (GF) snacks after school. Thirty-six percent lacked a 504 plan, with 5% misinformed. Hand hygiene concerns included 24% using sanitizer and 10% rarely washing hands before eating. Sixty-two percent disclosed CeD, 35% when prompted, and 3% refused, mainly 13-year-old males. Two percent hesitated to request GF options, and 2% consumed potentially gluten-containing food from friends.

Many US schools provide GF accommodations under the Americans with Disabilities Act (ADA) but lack national standards. Diverse GF options and education on GF-safe practices are crucial for GFD adherence. Discrepancies in parent-child perceptions emphasize the need for better communication. Adolescents, particularly females aged 12-13 with 2+ years on a GF diet, face higher risks. Transparent family-school communication is vital for optimizing the school experience and ensuring GFD adherence. Comprehensive nationwide school training is essential for celiac patients' well-being.