Following a strict gluten free diet is essential for anyone living with coeliac disease, but managing the condition can be challenging. Daily activities, food choices, social engagements, and overall quality of life can be affected, and these factors play an important role in how people experience life with coeliac disease.
Currently, healthcare support focuses on what foods to eat/avoid and physical recovery (gut healing) while failing to offer much support for the wider emotional and social impact of life with coeliac disease.
To tackle this issue, psychologists from the University of Surrey and a leading gastroenterology dietitian were awarded funding by the National Institute of Health and Care Research (NIHR), to explore the emotional, psychological and social challenges of coeliac disease and develop a framework to guide more holistic dietetic and psychological support. Coeliac UK was a member of the project team and worked to ensure that the experiences and priorities of people with coeliac disease were central to the project.
The study, led by Dr Rose-Marie Satherely, involved 62 people, including 35 adults with coeliac disease where some individuals were from groups usually underrepresented in research and 27 healthcare professionals who have experience of caring for people with coeliac disease. Through a combination of workshops and individual interviews, discussions explored what it’s really like to manage a gluten free diet, where the current healthcare support falls short, and what could help.
Three key themes emerged. Firstly, support was inconsistent, leaving some people lacking confidence in managing their diet and where to turn for advice. Secondly, living a gluten free lifestyle can affect how people see themselves and navigate life changes. Thirdly, managing coeliac disease requires an ongoing mental, emotional, and social effort that is usually invisible to others, and the capacity to cope with this can vary over time.
To address these challenges, the researchers developed the framework GLOW, or Gluten Free Living: Optimised Wellbeing. The framework exposes management of a gluten free diet as something that requires ongoing psychological work and sets out 3 key areas in which healthcare professionals can offer more support to help adults manage coeliac disease and maintain a positive wellbeing, in recognition of the psychological work:
- Orientation and Adjustment: supporting people to understand their diagnosis, adjust to changes in identity, and navigate the early stages of gluten free living. It’s recommended that this is done by providing clear and realistic expectations of support available, involving their family and loved ones as a wider support network, sign posting to appropriate resources, and empowering them with confidence.
- Sustained support: providing accessible support to manage necessary adaptations. It’s recommended that this is done by developing context specific plans, strategies and scripts for managing certain, potentially stressful situations (e.g. travel) and for unexpected surprises (e.g. needing to eat on the go) or life transitions (e.g. moving to university), plus arming the wider support network with guidance.
- Specialist psychological input: access to more targeted psychological support to help with more complex or concerning behaviours linked to coeliac disease. It’s recommended that referral to, or treatment with, relevant services for advanced psychological care focused on the specific challenges of coeliac disease are available via a clear pathway for those who need it.
The framework is designed so that these forms of support can be integrated across different healthcare settings, community organisations and digital groups. Rather than assuming everyone needs the same help, it recognises that support needs are personal and can change throughout life and that people receive care related to coeliac disease across different settings.
Future work needs to address how the GLOW framework can be put into practice and made most accessible to the people who need it. This research is an important step towards supporting people to manage coeliac disease in a way that also protects their emotional and social wellbeing.
If you would like to read more about this study, please see the published article in Health Expectations Journal here.