How sure would you want to be that you have coeliac disease before starting a gluten-free diet?

Press release issued: 14 January 2021

A new survey from researchers at NIHR ARC West and the University of Bristol has been launched to understand how sure people want to be that they’ve got coeliac disease before starting a gluten-free diet.

Coeliac disease is when a person’s immune response to gluten attacks the tissues in their digestive system. This leads to damage in the gut, which makes it more difficult to absorb important nutrients from food. Around one in 100 people in the UK have coeliac disease, although many are not diagnosed. Untreated patients have an increased risk of anaemia, osteoporosis, cancer, or infertility. The only treatment available is a gluten-free diet.

Diagnosing coeliac disease can be difficult. Some patients may be asymptomatic, while others have non-specific symptoms such as indigestion or bloating. It’s thought only 30 per cent of people with coeliac disease are actually diagnosed.

Guidelines recommend that adults and children "at high risk" of coeliac disease should be offered testing. However, it is not clear which groups are at high enough risk to justify routine testing, which symptoms should lead to testing, which tests should be offered, and whether a biopsy to confirm the diagnosis is necessary. In a biopsy for coeliac disease, the doctor inserts an endoscope through your mouth or nose to take tiny pieces of the lining of your small bowel. This is an unpleasant but safe procedure.

With this survey, the research team want to find out how sure people want to be that they have coeliac disease before starting a gluten-free diet. It takes about 20 minutes and participants will watch some short videos that tell you more about coeliac disease and the gluten-free diet. These are followed by some questions. Anyone living in the UK can participate. By filling out this survey you can win a £50 Amazon voucher.

The survey is part of a larger project to find the best testing strategy for diagnosing whether people have coeliac disease. The new testing strategy developed through this project has the potential to increase the number of people being diagnosed, speed up the process of diagnosis and improve patient outcomes.

Dr Martha Elwenspoek, Research Associate at NIHR ARC West and Bristol Medical School: Population Health Sciences, who is leading the survey work, said: "The results of this survey could have a huge impact, changing the way patients with coeliac disease are diagnosed in the UK. With so many people with coeliac disease going undiagnosed, or waiting many years for their diagnosis, this could be life changing for many people. Whether you have a coeliac diagnosis or not, this is a really important survey to participate in."

Complete the coeliac disease survey here: https://meded.onlinesurveys.ac.uk/coeliac-disease

Further information

About the National Institute for Health Research
The National Institute for Health Research (NIHR) is the UK's largest funder of health and care research. The NIHR:

Funds, supports and delivers high quality research that benefits the NHS, public health and social care
Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
Partners with other public funders, charities and industry to maximise the value of research to patients and the economy

The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR commissions applied health research for the direct and primary benefit of people in low- and middle-income countries, using UK aid from the UK government.

About the NIHR Applied Research Collaboration West
The NIHR Applied Research Collaboration West (ARC West) conducts applied health research with its partners and others in the health and care sector, alongside patients and members of the public. Applied health research aims to address the immediate issues facing the health and social care system. ARC West also helps bring research evidence into practice and provides training for the local workforce.