Misdiagnosing coeliac disease: an intolerable situation | Action Medical Research

Misdiagnosing coeliac disease: an intolerable situation

22 January 2001
Thousands of people suffering from a common dietary disorder are going undiagnosed and putting their health at risk, says a leading medical charity. Coeliac disease is an intolerance to gluten, which is found in wheat, rye, and barley. If untreated, the condition can be serious, especially in young children. Professor Paul Ciclitira, who is leading a study awarded by the charity Action Research and part funded by supermarket giant Sainsbury’s, is calling for more awareness among GPs and the public, including routine screening. He says even though the disease is relatively common, doctors often misinterpret the symptoms. Professor Ciclitira, based at the Gastroenterology Unit as part of St Thomas’ Hospital in London, adds: ‘Many people who seek help through their GP are told they are suffering from anaemia or irritable bowel syndrome, when in fact about 10% of them have coeliac disease. ‘But it’s crucial that the disease is quickly and properly identified in a patient so it can be treated appropriately as soon as possible.’ Professor Ciclitira, whose comments coincide with national Food Intolerance Day (Monday January 22), says that very few GPs opt for blood tests, which he argues should be carried out as routinely as those for diabetes and thyroid diseases. Coeliac disease is an inherited condition which affects one in every 300 in the UK, in which gluten damages the lining of the intestine. Symptoms can vary, ranging from tiredness and chronic diarrhoea in adults, to failure to put on weight in infants. Although treatable, some studies claim coeliac disease can lead to serious long-term complications such as osteoporosis and cancer if patients don’t avoid gluten in their diet. Similarly, children will be more at risk of developing autoimmune diseases such as diabetes. Action Research is dedicated to preventing and treating disease and disability by funding research at the cutting edge of medicine. The charity, which is approaching its 50th anniversary, has awarded more than £100,000 to Professor Ciclitira’s team to investigate how common coeliac disease is in families who have more than one affected relative. The study will involve screening all available relatives using sensitive blood tests, prior to diagnosis by small intestine biopsy. This will not only build on previous work to identify genetic links, but investigate whether there is a sub group with a dormant form of the disease. The study also aims to increase our understanding of the inheritance of coeliac disease, and may result in less invasive tests which can be used for early diagnosis. Dr Geoff Spriegel, Sainsbury’s technical director, says: ‘Sainsbury’s is delighted to have funded £70,000 to this important research project, as part of our ongoing commitment to our consumers’ dietary needs. ‘We continually strive to ensure there is a wide selection of clearly labelled products and ready-made meals on our shelves which complement both a gluten and wheat-free diet.’ Action Research is currently funding two other projects into coeliac disease, totalling another commitment of almost £117,000. One study is looking at abnormal immune responses in sufferers, with another looking at whether some patients who have the debilitating bone disease osteoporosis also have coeliac disease. Action Research launched its Touching Lives campaign this year, which aims to raise £1.5m for vital medical research to benefit children and families across the UK. Visit the charity’s website at www.action.org.uk For further media and press information, please contact Nicole Duckworth in the Action Research press office on 01403 327403 Fax: 01403 210541, or email nduckworth@action.org.uk A case study is also available.
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