Diminished quality of life among adolescents with coeliac disease using maladaptive eating behaviours to manage a gluten-free diet: a cross-sectional, mixed-methods study

Background Certain approaches to managing a strict gluten-free diet (GFD) for coeliac disease (CD) may lead to impaired psychosocial well-being, a diminished quality of life (QOL) and disordered eating. The present study aimed to understand adolescents' approaches to managing a GFD and the association with QOL. Methods Thirty adolescents with CD (13-17 years old) following the GFD for at least 1 year completed the Celiac Dietary Adherence Test (CDAT) and QOL survey. Their approaches to GFD management were explored using a semi-structured interview, where key themes were developed using an iterative process, and further analysed using a psychosocial rubric to classify management strategies and QOL. CDAT ratings were compared across groups. Results Gluten-free diet management strategies were classified on a four-point scale. Adaptive eating behaviours were characterised by greater flexibility (versus rigidity), trust (versus avoidance), confidence (versus controlling behaviour) and awareness (versus preoccupation) with respect to maintaining a GFD. Approximately half the sample (53.3%) expressed more maladaptive approaches to maintaining a GFD and those who did so were older with lower CD-Specific Pediatric Quality of Life (CDPQOL) scores, mean subscale differences ranging from 15.0 points for Isolation (t = 2.4, P = 0.03, d.f. = 28) to 23.4 points for Limitations (t = 3.0, P = 0.01, d.f. = 28). Conclusions Adolescents with CD who manage a GFD with maladaptive eating behaviours similar to known risk factors for feeding and eating disorders experience diminished QOL. In accordance with CD management recommendations, we recommend ongoing follow-up with gastroenterologists and dietitians and psychosocial support referrals, as needed.