One in 100 people in the UK have coeliac disease, an autoimmune disease caused by intolerance to gluten, a protein found in wheat, barley and rye. There is no cure and no medication — the only treatment is a life-long, strict gluten-free diet.
It is estimated that currently only 10 to 15 per cent of those with the condition have been clinically diagnosed. As there is no official register by the NHS of diagnosed patients it is difficult to know exactly the impact that the disease is having on the UK population.
Dr West’s research has been funded by Coeliac UK, the national charity for people with coeliac disease, along with Core, the UK national charity that funds research into diseases of the gut, liver and pancreas.
Potential genetic links
Starting in 2013, the study will use newly available data from anonymous patient records to investigate whether diagnosis is affected by where patients live and how affluent they are and how likely they are to be misdiagnosed with other conditions such as irritable bowel syndrome.
The research will also look at possible genetic connections such as whether a patient’s chance of developing coeliac disease and DH is increased if their mother is affected by the illnesses.
In addition, it will also look at the risk posed by pneumococcal disease to coeliac sufferers — in whom the spleen, which would normally offer some protection against the disease, does not function very well — and how many patients are vaccinated against pneumococcus.
The study will be a large-scale research project looking at around 10,000 people with coeliac disease and 150,000 with irritable bowel and the results will contribute significantly to the future diagnosis and healthcare for coeliac disease in the UK and worldwide.
Sarah Sleet, Chief Executive of Coeliac UK said: “We know coeliac disease is under diagnosed but we don’t know exactly how big the gap is. With an average diagnosis period of 13 years, people are enduring many years of symptoms which will impact on NHS resources.
“To plan health services for the future it is crucial to understand the numbers of people affected by coeliac disease and the health consequences. The results from this study will help the NHS focus resources to improve diagnosis rates and help clinicians manage patients better to follow up preventable complications and reduce drain on the NHS.”
"Precise measure of incidence"
Professor Roger Jones Chair of Core said: “This study is exciting because it will enable us to get a precise measure of the incidence of coeliac disease in the population, and also that of dermatitis herpetiformis, which is a chronic blistering skin condition closely linked to coeliac disease. The study will analyse the medical records of a large number of patients and, as well as giving us an up-to-date estimate of the extent of these conditions, it is likely to provide insights on how to improve their management. We know that the diagnosis of coeliac disease can be challenging and may be delayed for many months. We hope this research will have a real impact on improving services for patients.”
The symptoms of coeliac disease range from being mild to severe and can vary between individuals. Symptoms include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, weight loss — but not in all cases, skin problems, joint or bone pain as well as nerve problems (headaches, depression, loss of balance).
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