Inequalities in diagnosing coeliac disease in the UK: A Systematic Review.

In coeliac disease (CD), the body’s immune system mistakenly attacks its own tissues when foods containing gluten (a protein found in grains) are eaten. Around one in every 100 people are thought to have CD, but most people living with the disease are undiagnosed. This could be because over one in five people have no symptoms and so are not tested for it. Some people with symptoms may be diagnosed with something else by mistake, and certain groups of people may not go to their general practitioner (GP). The only treatment for CD is to avoid eating food containing gluten. If gluten continues to be eaten, the gut lining becomes damaged leading to problems absorbing food. This can result in vitamin deficiency and a higher chance of getting bone disease or cancer, and early death. In children, it can lead to poor growth and delayed puberty. Therefore, people who are not diagnosed will eventually become very unwell. We need to know which groups of people are more likely to be under-diagnosed with CD. When this is known, ways to help make diagnosis fairer for all people can be planned.

This study will find all available evidence on which groups of people are more likely to have undiagnosed CD. Together with help from members of the public with lived experience of CD (our PPIE group), we have listed things that are likely to affect the diagnosis of CD. We will search for these things in academic journals and in reports not published in journals, such as conference reports, charity newsletters and websites. All evidence found will be read by two researchers, who will agree which information to include in our study. Our PPIE members will help us make sense of the evidence found. All evidence will be assessed for quality and all relevant information written up into a report. Our PPIE members, together with the research team, will make conclusions and highlight the populations most at risk of under-diagnosis. This information will be written up as a review and will be published in an academic journal, shared with the charity Coeliac UK and coeliac patient groups, and presented as either a talk or a poster at academic conferences.

Our results will help us shape future work with our University of Bristol collaborators. We want to improve our understanding of what makes certain groups of people less likely to get their CD diagnosed. We really want to hear from patients and healthcare professionals (in interviews) to find out why under-diagnosis might happen. Finally, we will develop practical solutions for patients and healthcare staff to help reduce the number of under diagnosed people with CD and the harms from under-treatment of this chronic condition.