While it is the most common genetic condition in Europe, affecting an estimated one million people in the UK alone, few people have even heard of coeliac disease. Sarah Foster meets a rare diagnosed sufferer.
VERONICA Woodhouse was at a low ebb. The stress was piling up at work, aggravating the bowel problems she'd had for years. On top of that, she was suffering from neck pain, then there was a family tragedy, when her brother was killed in the Southall train crash. Never a big eater, she went completely off her food and her weight plummeted, making her look gaunt. Various tests were carried out, including by specialists in Leeds, but, apart from the anaemia she'd suffered from since being a teenager, doctors could find nothing wrong with her. Then she saw a chiropractor, who solved the mystery.
"It took her about 15 minutes to diagnose a lifelong condition," says Veronica, a teacher from Sherburn, Durham. "Before she even touched me, she asked had I been tested for coeliac. When I went to see my doctor he was so positive and said, 'She's very probably right. Let's get you tested.' I was diagnosed three years ago and started my diet on July 1."
With hindsight, Veronica realises that she had always had symptoms of coeliac disease. Starting with childhood cramps, she was found to be anaemic when she tried to give blood at 18. While she tried to control this with multi vitamins and iron tablets, it still meant she needed a blood transfusion when she gave birth to her first child. She had a miscarriage, which can be, but isn't always, caused by coeliac disease, and she'd always been prone to irritable bowel-type symptoms and mouth ulcers - other classic signs of the condition. At 5ft 2ins, she's below average height and no matter how much she ate, she was always thin.
Yet, while she'd half suspected coeliac disease, it wasn't until she was in her mid-50s that it was picked up. Veronica, now 58, says: "I did suspect that I had it but you pick up all sorts of information about health issues from magazines and you trust the medical profession to know more than you. It's incredible that it wasn't diagnosed, but it's only in the last five years that ordinary GPs have been able to pinpoint people with anaemia and other symptoms as maybe having coeliac disease."
Although relatively unheard of, the condition has been around for over 4,000 years. Coeliac (pronounced ceeliac) is an ancient Greek word describing an adverse reaction to cereal crops, discovered when cereal farming began. For several centuries, the word disappeared from use and was only revived in 1967.
A permanent condition affecting the whole body, coeliac disease is caused by an intolerance to gluten, a protein found in wheat, barley, oats and rye. When eaten, this damages the gut, preventing food from being digested and absorbed normally. In extreme cases, sufferers who come into contact with gluten can go into a kind of shock similar to that caused by a peanut allergy. If left unchecked, the disease can cause things like osteoporosis, stomach cancer and infertility.
Yet, despite its potentially serious effects, coeliac disease is easily treatable by sufferers simply avoiding foods containing gluten. Veronica says: "Within a week or so of starting a gluten-free diet, I started feeling a lot better." But she says that in the beginning, this required a lot of adjustments. "I realised that I needed a new toaster. I had to have my own work surface area and I have my own butter dish. My husband is really, really careful about using any jams and spreads, although we are more or less both gluten free."
This may sound extreme, but Veronica explains that she must avoid anything that has even come into contact with gluten. It means that she can't eat ordinary bread, pasta, cakes or biscuits, but she's quick to point out that there are many ways round this. "You can have all those things using our own flour. Lots of supermarkets have 'free from' sections and you can get absolutely anything. There are lots of recipes out there and at home, we use cornflour and arrowroot to make sauces or reduce the liquids. I also get a prescription where I can go to the pharmacy to get pasta, flour and bread."
While she must check the ingredients of everything she eats, being wary of hidden gluten in even the least likely foods like glucose, pre-grated cheese, and oven chips, she is helped by a directory produced by the support organisation Coeliac UK. Updated annually, it lists around 11,000 popular brand foods that are safe for coeliacs.
Determined not to let the disease spoil her life, and with encouragement from her husband John, Veronica continued eating out at restaurants, ringing first to check that they could cater for her. This led to her contacting Durham's Tourist Information office to find out if they had information on coeliac-friendly places. They didn't, but suggested that if she did the leg work, they would include the symbol GF, for gluten free, in their eating out guide. Now, in addition to contributing to the guide, Veronica has produced her own 'Where to eat in Durham' booklet.
Her involvement with Coeliac UK has led to her helping to establish a Durham support group, which meets at the university hospital every other month. She has also organised a meal for coeliacs at New College Durham, after giving a talk to trainee chefs there about the condition, and has posted her information about where to eat on a website for national and international visitors.
With an estimated 750,000 undiagnosed coeliacs in the UK, Veronica is keen to raise awareness of the condition among both health professionals and the public. She knows as well as anyone what a difference treatment can make. "I feel a lot better now than I ever did," she says. "I've put on a stone in weight and I'm now having to watch what I eat. For the first time in my life, I'm in control of my body."
* The next meeting of Durham Coeliac Support Group is in the education common room, east wing, University Hospital of North Durham, on July 6. For more information, contact Julia Clarke on 0191-333 2551.
Coeliac UK can be contacted on 0870 444 8804 or via its website at www.coeliac.co.uk
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