Half million people in the UK have undiagnosed coeliac disease

May 31 2009

Coeliac UK, the national charity for people with coeliac disease, is calling on the Government to ensure a new guideline launched this week by NICE (National Institute for Health and Clinical Excellence) is taken up by the medical profession to identify half million people in the UK who have undiagnosed coeliac disease.

The guideline on the recognition and diagnosis of coeliac disease, has identified specific symptoms and associated conditions such as Type 1 diabetes, which are linked to the condition. As a result, more people should be tested for the condition than in the past driving up diagnosis rates. See website www.nice.org.uk/CG86 for full details.

Coeliac disease is a serious auto immune disease in which the body's immune system reacts to gluten found in some foods, making the body attack itself. If left undiagnosed, the disease can lead to infertility, multiple miscarriages, osteoporosis and bowel cancer. Recent research has shown that patients have had to wait on average 13 years from first onset of symptoms to diagnosis. By testing patients for coeliac disease who present with the common symptoms of the condition, GPs could not only alleviate the suffering that individuals currently experience and reduce repeat visits from patients with unresolved symptoms, but also save the NHS money in the long run.

Coeliac disease affects 1 in 100 people in the UK; however, research suggests that only 1 in 8 of those affected have been diagnosed leaving over 500,000 people undiagnosed and at risk.

Dr Chris Steele, resident doctor on ITV's This Morning and Ambassador of Coeliac UK said: "I strongly support the need to raise awareness among the medical profession for diagnosing coeliac disease. It is often misunderstood and misdiagnosed. Working together we can help find the half a million people in the UK who are undiagnosed and ensure that they receive the best advice and assistance."

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE says: "The NICE clinical guideline on coeliac disease will provide healthcare professionals with a tool to help diagnose and manage the condition, based upon the best available evidence. Providing clarity to healthcare professionals will enable them to provide better support to people with coeliac disease which in turn will give them more confidence to cope with living with the condition. We have also developed a booklet for people who may have coeliac disease to help them understand how the condition should be diagnosed in the NHS - this is available from the NICE website."

Sarah Sleet, Chief Executive of Coeliac UK, said: "We are very pleased that NICE have published evidence based Guidelines which must be taken up by the medical practitioners to prevent years of misery for patients and needless waste of hard pressed NHS resources."

There is no cure and or medication for coeliac disease, the only treatment is a strict life-long gluten-free diet. Gluten is found in wheat, barley and rye and is used widely in the food industry.

http://www.coeliac.org.uk/