Putting a gluten-free life firmly on the menu

One in 100 people in the UK suffer from coeliac disease yet many go undiagnosed. Sufferer Emma Killilea speaks to Catherine Scott.

IT was a walk in the countryside which held the key to why Emma Killilea had been suffering stomach problems and acute lethargy.

"I was walking through a wheat field and wherever the wheat touched I came up in a rash. I started to think if it doing that to me on the outside what on earth is doing to my insides?"

says Emma.

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"I had been suffering from pains in my stomach and terribly lethargy which led to me having two or three days off work a week. I had been diagnosed with IBS (Irritable Bowl Syndrome) but then I realised that it could be something more. I gave up wheat immediately and within a couple of days my health was transformed and within a week I felt so much better it was unbelievable."

It turned out that Emma suffered from coeliac disease, an autoimmune condition which is triggered by an intolerance to gluten, a protein found in wheat, rye and barley.

But being diagnosed with coeliac disease was only the start of Emma's battle. Coeliacs have to avoid eating anything containing gluten – which rules out bread, pasta and anything having flour.

"I found it very frustrating going out or even to the supermarket and being unable to find gluten-free food. I found I could no longer go out and pick up a snack, or go out for a meal as many options on the shelves or the menu included wheat and gluten."

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As a computer games designer, Emma decided the best course of action was to give up her job, retrain and put some options back on the shelves for others facing the same difficulties.

"It was quite a major step. I moved to Sheffield to study at Sheffield Hallam University because they had a great BSc in Food Marketing and Management," says Emma. She then set about launching Delicious Alchemy, supplying gluten and wheat-free foods to major supermarkets and the hotel and catering industry.

"People are definitely becoming more aware of gluten," says Emma.

"We have won a number of awards for our products and our recent oats have been phenomenal. There are three types of people who buy our products there are those with coeliac disease, those who have not yet been diagnosed and then those who want to cut out gluten as a life-style choice."

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Emma's products are now available in Sainsbury's, Waitrose and Booths, with a further seven listings agreed in the last two months. She also advises charities and businesses about coeliac disease and gluten.

"People are still a bit confused about gluten, but Coeliac UK has done a lot to raise awareness and gradually there is more choice out there."

Emma will never be cured of coeliac disease and she also suffers a secondary condition with her thyroid, but she feels that she is doing something to give more choice to people who want to avoid gluten in their diet.

As well as those that have been diagnosed with coeliac disease, there are currently half a million people in the UK living with undiagnosed coeliac disease, leading to unnecessary pain and discomfort. Coeliac UK is running an awareness campaign this week (May 10 to 16).

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Free For Tea focuses on a new law concerning gluten-free foods. The law states that foods must be less than 20 parts per million (ppm) gluten to be sold as gluten-free, and this could now apply to food served in the catering sector.

People are being urged to hold gluten-free events and to stress to chefs when they eat out the need for gluten-free menus.

A survey of more than 3,000 people with coeliac disease found that nearly one third of respondents said that they never eat out, or eat out less than once every other month. Nearly a quarter said they have travelled for an hour or longer in order to find a restaurant that provides a gluten-free meal.

At least one in 100 – 600,000 people in the UK – has coeliac disease, which is an autoimmune disease caused by intolerance to gluten. Damage to the gut lining occurs when gluten is eaten; there is no cure or medication and the only treatment is a strict gluten-free diet for life.

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If someone with coeliac disease eats food that contains gluten, which is found in wheat, barley and rye, they may become ill within a few hours. Without keeping to a gluten-free diet, coeliac disease can lead to other conditions, such as malnutrition, infertility, multiple miscarriages, osteoporosis and bowel cancer.

Emma says: "Coeliac disease can be very isolating. Not only is it difficult to eat out at restaurants but you also get left out of dinner parties because people are scared to cook for you because they just don't understand enough about gluten-free cooking."

www.deliciousalchemy.com

Coeliac disease – The facts

Coeliac Disease affects, on average, one person in every 100 in the UK, although only one in eight is actually diagnosed with the condition.

It is an autoimmune condition triggered by an intolerance to gluten, a protein found in wheat, rye and barley.

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Symptoms include diarrhoea, weight loss, abdominal pain, bloating, excessive wind, constipation, tiredness, recurrent mouth ulcers, skin rash, depression, joint or bone pain, neurological problems or deficiency of iron, folic acid or vitamin B12.

If untreated for a long period, the condition can cause wide ranging problems such as osteoporosis, infertility and cancer of the gut.

Diagnosis generally takes the form of a blood test, followed by an biopsy where a small section of the lining of the small intestine is taken and examined.

The only way to manage coeliac disease is by following a life-long gluten free diet.

www.coeliac.org.uk

New research on diagnosis

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Scientists working at Sheffield's Royal Hallamshire Hospital are researching methods to improve the speed of diagnosis of coeliac disease.

The research by Prof David Sanders, a consultant gastroenterologist and his team, will focus on changing the clinical approach of diagnosing coeliac disease in patients who have non- specific gut symptoms.

They propose taking a simple and quick blood test in a sample group of patients attending the hospital for an endoscopy, but for whom coeliac disease is not a suspected diagnosis.

Using the "pin prick" test, currently sold in the UK as Biocard, the test will provide instant results.

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The results will be compared with a group of patients treated in the usual way and the research will be completed by January 2011.

Coeliac UK, the national charity for people with coeliac disease, has awarded Prof Sanders 14,000 to carry out the research which has been match funded by the Biocard company.

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