While coeliac disease is often discussed in relation to symptoms, diagnosis and the gluten free diet, Coeliac UK is keen to broaden that conversation to highlight the importance of mental wellbeing.
Dr Rosie Satherley, psychologist at the University of Surrey, specialises in the lived experience of coeliac disease and her work focuses on improving wellbeing and support for people with coeliac disease.
Coeliac UK has supported Dr Satherley’s NIHR-funded research exploring the psychological impact of coeliac disease and the importance of integrating psychological support alongside dietetic care for both children and adults living with the condition.
Coeliac UK has also funded Dr Satherley to develop a resource designed to support children and their families with both the practical and psychological aspects of living with coeliac disease.
Looking beyond the gluten free diet
The resource aims to support children and families with topics including:
- managing anxiety
- staying motivated with the gluten free diet
- coping with low mood
- understanding the wider emotional impact of coeliac disease
Dr Satherley explained that while the gluten free diet remains essential, it is only one part of the picture. Many people living with coeliac disease face additional emotional pressures that can often go unseen.
The invisible load of coeliac disease
Dr Satherley describes life with coeliac disease as carrying both a visible and invisible load.
The visible side might include planning ahead, carrying gluten free snacks, researching safe places to eat, or checking menus carefully. But there is also the hidden emotional burden, including anxiety, stress, stigma and the mental effort of always having to think ahead.
For some, social situations can feel particularly difficult, especially when needing to explain dietary needs or challenge misunderstandings around gluten free food.
Supporting people in everyday healthcare settings
Dr Satherley believes psychological support should be more accessible for people living with coeliac disease.
While specialist psychologists in every clinic may not always be realistic, she highlights the value of training wider healthcare teams, including dietitians and gastroenterology professionals, to better understand the broader impact of coeliac disease and support patients more holistically.
Why research like this matters
Dr Satherley’s work, with support from Coeliac UK has helped improve understanding of the psychological needs of adults, children and families affected by coeliac disease.
Her research reinforces something many people in our community already know: living with coeliac disease is about much more than food.
It is about confidence, wellbeing, connection, routine, mental load and feeling understood.
Support beyond diagnosis
At Coeliac UK, we know that diagnosis is only one step in the journey.
That is why we continue to fund research, campaign for better care, provide trusted information and bring people together through local groups, services and community support.
This Mental Health Awareness Week, we want to remind anyone living with coeliac disease that support is available, and that the emotional side of the condition matters too.
While we are not a specialist mental health service, our expert dietitians are here to support you with dietary questions and living well gluten free.
If you need dietary support, contact the Coeliac UK Helpline on 0333 332 2033.
Find support
To learn more about coeliac disease, living gluten free and the support available, visit:
www.coeliac.org.uk