Dietetic and psychological support for coeliac disease
Research type
Research Study
Full title
Designing Integrated Dietetic and Psychological NHS Pathways for Adults Living with Coeliac Disease
IRAS ID
336623
Contact name
Rose-Marie Satherley
Contact email
Sponsor organisation
Royal Surrey NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Summary of Research
Coeliac disease (CD) is medical condition, where the body attacks its own tissues when gluten is eaten. If left untreated, CD increases risks for weak bones, cancer, and difficulties having children. There is no cure for CD; instead, CD is managed by behaviour change – patients need to follow a strict gluten-free diet (GFD). Whilst this change is essential, the shift to a GFD can be difficult with only 70% of patients being able to do so successfully. Furthermore, managing a strict GFD can be isolating, and there can be heightened anxiety around food, particularly when eating outside the home. In fact, compared to the general population, people with CD have higher rates of anxiety, depression, and eating disorders. So, for patients with CD to live well, both dietetics (e.g., knowledge around food, reading food labels) and psychology (e.g., coping strategies, motivation) have much to offer. However, dietetic support for CD is variable across the UK, and very few services provide any psychological support.
Aim: To support adults with CD to manage their GFD, wellbeing and quality-of-life, this work explores new ways of delivering routine care, by joining up dietetic and psychological approaches.
Approach: Our researchers will work closely with 20 patients with CD, and 15 healthcare professionals to develop a new way of delivering healthcare. During group workshops, we will explore the types of support available in clinical practice, what works and what doesn’t work, perceptions on joined-up dietetic and psychological approaches, and what dietetic and psychological intervention content is required. This information will be used to develop the new way of working that joins up both dietetic and psychological approaches.
Summary of Results
For people with coeliac disease, eating even a crumb of gluten can make them seriously ill. The only treatment is a strict gluten-free diet (GFD) that must be followed every day, for life. People with coeliac disease often feel worried when eating out, guilty for being “difficult,” or scared of getting sick from hidden ingredients. Some avoid restaurants or social events, just to stay safe. For many, managing a GFD can make them feel different, and some take risks to avoid awkward conversations or feeling left out.
This project listened closely to people’s stories, particularly from groups often left out: minoritised communities, people experiencing economic and social hardship, and older adults. We also spoke to healthcare professionals who want to help but don’t always have the tools or training to offer emotional support.
Together, we designed a new kind of healthcare: healthcare that supports not just the GFD, but life with coeliac disease. We created a flexible, three-level model:
Level one offers everyone simple, supportive information at diagnosis, not just about food, but about emotions, relationships, and identity.
Level two helps people who are struggling a bit more. With special training, dietitians and other healthcare staff can offer extra support when things feel overwhelming.
Level three is for those facing more serious mental health challenges like depression, with clear pathways to specialist psychological care.
This approach is built to work in real NHS settings. Services can choose what level fits their team and their community best.
Too often, people with coeliac disease are told to “follow the diet”, but the reality is much harder. This project recognises that emotional wellbeing and confidence are just as important as the GFD.REC name
East of Scotland Research Ethics Service REC 1
REC reference
24/ES/0016
Date of REC Opinion
28 Feb 2024
REC opinion
Further Information Favourable Opinion