2025 Theses Doctoral

How Students with Celiac Disease Navigate their Transition to College: The Impact of Early College Experiences on Gluten-Free Diet Adherence and Quality of Life

Carrieri, Adriana

Celiac disease (CeD) is an immune-mediated systemic disorder triggered by the consumption of gluten-containing foods in genetically predisposed individuals. Given that a strict gluten-free diet (GFD) for life remains the only available treatment, there can be a significant impact on quality of life (QOL) and GFD adherence in individuals with CeD. Life transitions can be particularly challenging.

This study explored how students with CeD navigate their transition to college, including their decision on where to attend college and their early college experiences. Participants were 15 parent-student dyads. Students were eligible to participate if they were patients at the Celiac Disease Center at Columbia University with self-reported biopsy-proven CeD and a college freshman planning to live on campus while following a GFD. Students completed three semi-structured interviews over a four-month period during their freshman year. In addition, they completed questionnaires at baseline and follow-up assessing GFD adherence, symptoms, QOL, and psychosocial factors that may impact these changes, such as self-efficacy and the capacity to adjust to college. Parents completed an open-ended questionnaire at the end of the study sharing self-perceptions and concerns for their child with CeD at college. All but one participant completed all study measures.

Findings indicated that CeD played a minor role in college applications but a moderate role in final college decisions. Few students took proactive steps to prepare for managing the GFD at college, as only about half reported contacting dining services or a campus dietitian prior to arrival. Once on campus, students maintained high adherence to the GFD and stable QOL, though 40% believed that they were accidentally exposed to gluten at some point since starting college.

Qualitative analyses highlighted multiple challenges in the dining halls, the importance of social support from roommates, friends, and family, and coping strategies developed over time. All parents in the study were mothers, who generally transferred responsibility for GFD management to their child once they leave for college, except for scheduling CeD-related medical appointments. Notably, 87% of parents reported that they had many concerns about GFD support prior to their child stated college, and 40% reported disappointment with campus dining options after their child spent a semester or more at college.

Overall, students seem to proactively adhere to the GFD at college and sustain good QOL. However, qualitative data revealed a high cost of daily coping strategies and ‘disclosure fatigue’ was an ongoing concern. These findings fill an important gap in the existing literature as to challenges faced by individuals managing the GFD during the college transition and how they can be best supported to maximize diet adherence and QOL.