Abstract
Individuals with Coeliac Disease (CD) are required to follow a lifelong strict gluten-free diet (GFD). Hypervigilance around the GFD may contribute to disordered eating, increase the risk of mental health difficulties, and impair quality-of-life.1–3 However, research has focused on adults,4 5 and little is known about children and young people’s (CYP) approaches to managing the GFD. This study explored CYP with CD interactions and experiences with food. Fifteen CYP with CD, aged 8–13 years, who were following the GFD for at least one year, were interviewed with their caregiver about their management of the GFD. Reflexive thematic analysis was used to analyse the data. CYP described a need for control over others and the environment to effectively manage the GFD, and a heightened sense of threat and hypervigilance around food, characterised by persistent thoughts about CD symptoms, preoccupation with a chain of events leading to gluten-contamination, and extensive risk assessments. A continuum of approaches to managing the GFD was apparent, ranging from pragmatism to hypervigilance. The findings were applied to an existing model of gluten-related distress and hypervigilance developed from research with adults (5), which was adapted to reflect the experiences of CYP in the current study. Implications to monitor gluten-related distress, beliefs, and behaviours in CYP with CD, and proposed psychological interventions are discussed, as well as limitations of the study.ReferencesSatherley R, Howard R, Higgs S. Disordered eating practices in gastrointestinal disorders. Appetite. 2014;84:240–50.Cadenhead JW, Wolf RL, Lebwohl B, et al. 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. J Hum Nutr Diet. 2019;32(3):311–20.Ludvigsson JF, Lebwohl B, Chen Q, et al. Anxiety after coeliac disease diagnosis predicts mucosal healing: a population-based study. Aliment. Pharmacol. Ther. 2018;48(10):1091–8.Satherley RM, Howard R, Higgs S. Development and validation of the coeliac disease food attitudes and behaviours scale. Gastroenterol Res Pract. 2018;2018.Satherley RM, Lerigo F, Higgs S, et al. An interpretative phenomenological analysis of the development and maintenance of gluten-related distress and unhelpful eating and lifestyle patterns in coeliac disease. Br. J. Health Psychol. 2022;27(3):1026–42.