Around 1 in 100 people in the UK have coeliac disease, but many remain undiagnosed because they have no symptoms or only vague ones. The UK National Screening Committee needs to decide whether to launch a national screening programme that would test people without symptoms for the condition, rather than only testing those who already feel unwell or have a family history of the disease. This matters because screening carries real risks: it can cause unnecessary worry from false alarms, miss genuine cases, and identify mild conditions that would never have caused problems, leading to overtreatment. The current approach—testing only symptomatic or high-risk adults—may miss many people who could develop serious long-term complications like anaemia, nerve damage, osteoporosis, or certain cancers without ever realising they are ill. This project will produce an evidence map—a systematic catalogue of existing studies—to show whether enough reliable research exists to justify a full review of screening for coeliac disease. If the evidence is sufficient, the committee could move toward evaluating a national screening programme. If not, the map will clarify where more research is needed before any policy change. The outcome directly affects whether millions of asymptomatic adults might one day be offered a simple blood test that could prevent debilitating complications.
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1.1 What is coeliac disease? Coeliac disease is a condition where the body’s immune system attacks its own tissues when you eat gluten. This damages the gut (small intestine) so the body can’t properly take in nutrients from food. Gluten is a protein found in wheat, barley and rye. In people with coeliac disease, gluten-containing foods can trigger a range of symptoms like diarrhoea, constipation, tiredness, mouth ulcers, and stomach aches. Some people with coeliac disease don’t have any symptoms or have such vague symptoms they don’t realise they might be ill. Around 1 in 100 people in the UK have coeliac disease, although many are not diagnosed. There’s no cure for coeliac disease but following a gluten-free diet should help to control symptoms and prevent serious long-term complications. Even people with no symptoms or mild ones can develop complications like lack of iron or B12 (anaemia), nerve damage, weakening of the bones (osteoporosis) or some forms of cancer. Current guidelines only recommend testing for adults with symptoms or who have a “high risk” for coeliac disease because they have close relatives with the condition. This is usually a blood test to see if it is likely they have coeliac disease. If the test shows special markers for the condition are present, then there will be another check by taking a small sample of tissue from the gut (a biopsy). We want to understand if a national programme that tests people without symptoms (screening) could lead to better outcomes for them. Or if it would be better to keep the current approach to testing. 1.2 Why might screening not be a good idea? All screening has the potential to cause harm as well as benefit. It can identify things that would never have caused problems, leading to unnecessary worry and treatment. Screening can sometimes raise false alarms when a test result suggests something is wrong but further tests show there’s no issue, which can be stressful. Some real cases can also be missed, which can give false reassurance and delay diagnosis and treatment. Before starting or changing any screening programme, we need to understand if it works better than not screening, or better than the current approach. 1.3 What are we trying to find out? The UK National Screening Committee wants to find out whether screening for coeliac disease would lead to better outcomes than the current approach for diagnosing coeliac disease. As a first step, they need to check if there is enough reliable evidence to support exploring the topic in more depth. We’re looking at how many studies and what types of studies have looked at the following questions: • Are people with certain risk markers, like diabetes or having a relative with coeliac disease, more likely to develop coeliac disease than those without the risk marker? • How well do current tests work? How good are tests at detecting coeliac disease in adults and correctly identifying adults who do not have it? • Are there health benefits to identify individuals with Coeliac Disease who do not have symptoms?' • Is it better to screen all adults for coeliac disease or to just test people who are likely to be at a high risk of developing coeliac disease?
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