8 March 2022

In 2018, we invited Coeliac UK members to take part in an online survey to support a new research project at the University of Sheffield. Researchers have been working to better understand how common physical symptoms including gut symptoms like diarrhoea or bloating are in adults with coeliac disease. Thanks to the help of our members, the results of this research have now been published – read on to find out more and you can also hear more later in March when Dr Imran Aziz will be sharing the research at our annual Research Conference.

Why investigate physical symptoms?

People with coeliac disease may experience ongoing gut symptoms, even when following a gluten free diet. It’s important to investigate ongoing symptoms with your local healthcare team to understand the cause.

One explanation could be functional gastrointestinal disorders (FGIDs). These are a group of gut – brain interaction disorders with no known physical cause which cause gut symptoms, like irritable bowel syndrome. In this research, people with coeliac disease were asked about their symptoms to see if they met the criteria for an FGID.

What does the research tell us?

The researchers analysed responses from 863 people with coeliac disease and divided them into two groups: those following a strict gluten free diet and those not. They also compared people with coeliac disease following a gluten free diet with the general population.

Based on the answers given, 61% of people with coeliac disease were thought to be following a strict gluten free diet and 39% were not. It can be difficult to measure how well people are following their diet, but the researchers used a method that has been confirmed to be reliable in other research.

Within the group following a strict gluten free diet, 51% of people with coeliac disease had FGID symptoms. This increased to 75% in people with coeliac disease who were not sticking to the gluten free diet. Whilst you’d expect gluten to cause more symptoms, the 51% figure raises more questions around why those who seem to be staying gluten free may still experience symptoms. The study also showed that the prevalence of FGIDs was higher in people with coeliac disease on a strict gluten free diet compared to the general population. Again, we need more research to find out why this is.

Dr Imran Aziz, research and consultant gastroenterologist at the Royal Hallamshire Hospital said "One in two people with coeliac disease, despite having been on a gluten-free diet for a number of years and demonstrating optimal adherence, have ongoing symptoms compatible with a FGID. Addressing disorders of gut-brain interaction might improve outcomes in this specific group of patients, and we hope to explore this in future studies". 

What to do if you’re experiencing symptoms

First of all, don’t guess about what might be causing your symptoms and remember that there is help available so don’t suffer in silence. The best thing you can do is speak to your healthcare team as there are experts who can support you and investigate further. In the meantime, read more about ongoing symptoms on our website.

We would like to say a big thank you to our members, we are very grateful to those who took the time to complete the survey. This research is an important step along with road to understanding FGIDs in people with coeliac disease and wouldn’t have been possible without your support. We need more research to improve our understanding and to identify the best interventions and will keep our community updated as the evidence develops.