Hypervigilance in Coeliac Disease
Research type
Research Study
Full title
Hypervigilant Approaches to Gluten-free Dietary Management in Children and Young People with Coeliac Disease
IRAS ID
264732
Contact name
Rosie-Marie Satherley
Contact email
Sponsor organisation
Kings College London
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Coeliac disease is a common digestive condition where the small intestine becomes inflamed and unable to absorb nutrients. There is no treatment for coeliac disease, but the condition can managed by following a strict, gluten-free diet. Strict management of the gluten-free diet is essential to prevent complications including osteoporosis, gastrointestinal cancers and early mortality. However, recent research suggests that some people may use hypervigilant approaches to managing the gluten-free diet. These individuals may be at greater risk of eating disorders, low mood, anxiety and impaired quality of life.\n\nClinicians treating patients with coeliac disease urgently need guidance on how to best identify those using hypervigilant approaches to manage their gluten-free diet, and how to support these individuals by advocating for strict adherence to a GFD, whilst maintaining quality of life. \n\nThe purpose of this project is to: (1) support the identification of children, young people and caregivers with hypervigilant approaches to managing the gluten-free diet; (2) understand the impact of hypervigilant gluten-free diet management on quality of life; and (3) identify support for children, young people and their caregivers, who use hypervigilant approaches to manage the gluten-free diet. \n\n
Lay summary of study results: Children and young people with coeliac disease must follow a strict gluten-free diet for life. Managing this diet can be difficult, as it requires constant attention to food labels, preparation, and the risk of cross-contamination.
This study explored the experiences of children and young people aged 8–16 and how they approach managing their diet. Some used a balanced and flexible approach, while others became very focused on possible risks. This “hypervigilant” style was linked with more anxiety, avoidance of social events involving food, and lower quality of life. By contrast, those with more pragmatic approaches reported less worry and greater confidence in managing their diet.
The research also developed a new questionnaire, the Child Coeliac Disease Food Attitudes and Behaviours Scale (Child CD-FAB), which helps identify children who may be overly anxious about gluten and at greater risk of reduced wellbeing. Early testing showed the questionnaire is reliable and could be useful in clinical practice.
Overall, the findings suggest that while careful management of the diet is essential, being overly vigilant may affect mental health. Healthcare teams should support families to balance strict gluten-free eating with psychological wellbeing.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
19/YH/0447
Date of REC Opinion
21 Feb 2020
REC opinion
Further Information Favourable Opinion