How many people in the UK actually live with coeliac disease, how many are newly diagnosed each year, and how long do they wait for that diagnosis? A new research project aims to answer exactly those questions. On 28 August 2026, Coeliac UK announced that it has joined forces with Crohn’s & Colitis UK to fund a new epidemiology study worth £106.5k.
Who is behind the study
The award goes to Dr Martha Elwenspoek and Dr Mohamed Shiha, from the University of Bristol and the University of Sheffield. It was made through a joint epidemiology research call run by the two charities. According to Coeliac UK, the project started in July 2026 and is expected to be completed within 16 months.
“I am delighted to receive this award from Coeliac UK and Crohn’s & Colitis UK. This research brings together my interests in epidemiology, routinely collected healthcare data, and improving diagnostic pathways,” said Dr Elwenspoek in the charity’s announcement.
What the researchers will look at
The team will establish up-to-date figures on the incidence (new cases per year) and prevalence (total number of people living with a condition) of several gluten-related and digestive conditions across the UK:
- Coeliac disease
- Gluten ataxia
- Dermatitis herpetiformis
- Different forms of inflammatory bowel disease (IBD)
They will also study how often coeliac disease appears alongside other conditions — known as comorbidities — specifically type 1 diabetes, autoimmune thyroid disease and migraine.
How: millions of anonymous patient records
To do this, the researchers will use the Clinical Practice Research Datalink (CPRD), a database containing millions of anonymised patient records from UK healthcare. By analysing these records, the team hopes to work out how many people live with each condition, how many receive a new diagnosis each year, and — crucially — where diagnostic delays happen.
Why this matters for people with coeliac disease
Reliable numbers are the foundation for almost everything else: they help health services plan care, make the case for better testing and screening, and show where people are slipping through the net. Better data on diagnostic delays in particular could help shorten the often long road many coeliacs travel before getting a diagnosis — and, with it, access to the right support and a strict gluten-free diet.
Looking at gluten ataxia and dermatitis herpetiformis in the same study is also significant. These less familiar manifestations of gluten-related autoimmunity affect the nervous system and the skin respectively, and are frequently overlooked. Including them alongside coeliac disease and IBD should give a much more complete picture of how these conditions overlap.
The partnership itself is worth noting too: two major patient charities pooling resources on a shared research question is an efficient way to fund work that benefits both communities.
What happens next
With a 16-month timeline from July 2026, results are not expected before late 2027. We will keep an eye on Coeliac UK’s updates and share the findings once they are published. In the meantime, if you are travelling to the UK, remember that Coeliac UK is also a great resource for finding safe places to eat.
On the everyday side of living with the condition, read our report on the study that found a celiac immune reaction at just 3 mg of gluten.
Source: Coeliac UK – “Coeliac UK and Crohn’s & Colitis UK unite to fund epidemiology research” (28 August 2026).
