The University of Nottingham

New research from The University of Nottingham has revealed a fourfold increase in the rate of diagnosed cases of coeliac disease in the UK over the past two decades, while an estimated three-quarters of people with the disease remain undiagnosed.

The National Institute of Health & Care Excellence (NICE) previously estimated that only 10-15% of those with coeliac disease had been diagnosed. However, latest research by Dr Joe West in the University’s Division of Epidemiology and Public Health, funded by Coeliac UK and CORE, has shown that the level of diagnosis has increased to 24%.

Dr West, Clinical Associate Professor and Reader in Epidemiology, said: “This work highlights the rapidly rising rates of diagnosis of coeliac disease in the UK over the last 20 years which is most likely a legacy of the increased availability and accessibility of tests for the disease during this time.

 “However, our work also highlights that inequalities remain in the recognition and diagnosis of coeliac disease throughout the UK. Such variation by region in the rates of diagnosis could be removed if NICE guidance were followed uniformly.”

Strict diet

Coeliac disease is an autoimmune disease caused by intolerance to gluten. Left untreated it may lead to infertility, osteoporosis and small bowel cancer. 1 in 100 people in the UK have coeliac disease, with the prevalence rising to 1 in 10 for close family members

The only treatment for coeliac disease is a strict, lifelong gluten-free diet. Gluten is a protein found in wheat, barley and rye and, once diagnosed, people with coeliac disease need to eliminate all gluten-containing foods and make sure they only eat gluten-free varieties.

Researchers identified the number of people diagnosed during the study period using the diagnostic codes for coeliac disease recorded in the Clinical Practice Research Datalink (1990-2011).

This research, published by The American Journal of Gastroenterologycomes out as the charity celebrates its annual Awareness campaign which this year is entitled the ‘Gluten-free Guarantee’ and aims to improve availability of gluten-free foods in stores across the UK.

Sarah Sleet, Chief Executive of Coeliac UK said:  “This latest research shows that nearly a quarter of people with coeliac disease have now been diagnosed and gives an up to date picture of the diagnosis levels across the UK. Of course, increasing numbers with a diagnosis is good news and will inevitably mean that there will be an increased demand for gluten-free products in supermarkets.  But the three quarters undiagnosed is around 500,000 people – a shocking statistic that needs urgent action.”

Gluten-free food

From 12-18 May 2014 the charity is asking people across the UK to support the ‘Gluten-free Guarantee’ which asks supermarkets to commit to have in stock eight core items of gluten-free food, making it easier for people with the condition to manage their gluten-free diet, which is their only treatment.

“Can you imagine going into your local supermarket and there is no bread you can eat, not one loaf, not one slice? And when you check out the pasta, cereal or flour again there is nothing available on the shelf which means you have to trawl around two or three stores in order to be able to find your staple foods. This is not about your preferred brand but about the major supermarkets ensuring that they have sufficient stock in all their stores whatever their size for this growing market of people who depend on gluten-free food for their health.”

The symptoms of coeliac disease range from mild to severe and can vary between individuals. Not everyone with coeliac disease experiences gut related symptoms; any area of the body can be affected. Symptoms can include ongoing gut problems such as bloating, abdominal pain, nausea, constipation, diarrhoea, and wind, and other common symptoms include extreme tiredness, anaemia, headaches and mouth ulcers, weight loss (but not in all cases), skin problems, depression, and joint or bone pain.