COELIAC UK’S CAMPAIGN TO FIND THE HALF A MILLION PEOPLE WITH UNDIAGNOSED COELIAC DISEASE

Coeliac UK, the national charity for coeliac disease announces the support of Joe Simpson, mountaineer, author and subject of the BAFTA award winning film ‘Touching the Void,’ who has recently been diagnosed with coeliac disease, for their campaign to find the missing half a million people in the UK undiagnosed with the autoimmune disease and specifically targeting those diagnosed with Irritable Bowel Syndrome (IBS). 

1 in 100 people in the UK have coeliac disease however, only 10 – 15% of those with the condition are diagnosed. Almost 25% of coeliac patients had previously been told they had IBS or were treated for it before they were diagnosed with coeliac disease, according to recent research, suggesting that tens of thousands of people are not being investigated early enough for coeliac disease.

Coeliac UK’s Gut Feeling campaign takes place from 13-19 May 2013 and the Charity is encouraging people across the UK to consider how their gut is feeling and to discuss any symptoms they have with their GP to help bring down the average length of diagnosis which is currently 13 years. Website www.coeliac.org.uk/gutfeeling 

Joe explains, “I was diagnosed with coeliac disease in October last year after enduring numerous blood tests and, because of poor awareness on the part of my GP, I ended up fearing I had cancer. I am supporting Coeliac UK’s campaign to help find the many thousands of people in the UK who are currently undiagnosed and I encourage anyone that is struggling with symptoms to speak to their doctor and insist that they are tested for coeliac disease.”

Coeliac disease is an autoimmune disease caused by intolerance to gluten. There is no cure and no medication and the only treatment is a strict gluten-free diet for life. Left untreated it may lead to infertility, osteoporosis and small bowel cancer.

Sarah Sleet, Chief Executive of Coeliac UK said: “The Charity is seeing around 1200 new Members join every month but we still know that there are many people who are undiagnosed. Doctors should be following NICE guidelines which state that patients with IBS symptoms should be tested for coeliac disease first, but it seems some are too quick to diagnose people with IBS rather than arrange for a coeliac blood test. This research, showing nearly a quarter of coeliac disease patients had a previous diagnosis IBS before ruling out coeliac disease, illustrates the scale of the problem. The sooner someone is diagnosed and begins a strict gluten-free diet, their gut will begin to heal and the risk of further complications will reduce.” 

Joe continues, “As a mountaineer for 25 years I experienced all sorts of serious stomach infections and became quite used to dealing problems I associated with common infections I picked up in India, Africa, South America or in the Himalayas. In retrospect, this could all have been down to undiagnosed coeliac disease, certainly within the last 6 or 7 years. My poor diagnosis led to me becoming anaemic, suffering from a massive lack of vitamin B12, iron and folic acid which resulted in Osteopenia and I will soon be tested for Peripheral Neuropathy. Early diagnosis could have avoided these complications.”

Gluten is a protein found in wheat, barley and rye and is found in bread, pasta, pizza, cakes etc. However, it is also often used in a wide range of products including mayonnaise, soy sauce, sauces, sausages and many processed goods.

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 bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, weight loss (but not in all cases), skin problems, depression, joint or bone pain and nerve problems. 

“People can develop the condition at any age and it can be triggered by a range of things such as stress or after a tummy bug. You can not catch coeliac disease but are genetically predisposed and we are hoping this campaign will persuade anyone who has been diagnosed with IBS or who has symptoms to ask their GP for a test. It is essential however, to keep eating gluten until the tests are completed otherwise the results could give a false negative,” continued Sarah Sleet.