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Is it coeliac disease

Coeliac disease, an autoimmune condition caused by an intolerance to gluten, affects 1 in 100 people in the UK. But with only 24% of those with the condition having a diagnosis, an estimated half a million people are living with coeliac disease without knowing it.

Coeliac UK, the national Charity for people with coeliac disease has its annual Awareness Week from 11–17 May when it will be raising awareness of the symptoms of coeliac disease and asking people to get involved in campaigning for improved diagnosis rates in coeliac disease. This year’s Awareness Week, Is it coeliac disease? will be the launch pad for the Charity’s new two–year diagnosis campaign.

Coeliac stomach crampsFinding the half a million

The campaign hopes to reach those experiencing symptoms, which most commonly include frequent bouts of diarrhoea, nausea and vomiting, abdominal pain and stomach cramping, ongoing fatigue and regular mouth ulcers and ask them to question: “Is it coeliac disease?”

In May, the charity is launching a dedicated website, which will include information and advice both for the general public and healthcare professionals on the symptoms and risk factors associated with coeliac disease. The site will include a new online assessment to help people decide whether their symptoms could be coeliac disease. Following completion of the questionnaire people will receive their results by email, highlighting if they need to seek further advice from their GP.

Sarah Sleet, Chief Executive of Coeliac UK, said: “With half a million people living with undiagnosed coeliac disease we must take radical action to turn around this horrendous situation. We hope that giving people direct access to our new online assessment tool will put people who are suffering with the symptoms of undiagnosed coeliac disease on a pathway to diagnosis and avoid potentially life–threatening, long–term health complications. In addition, we hope this will help reduce the unacceptable length of time needed to gain a diagnosis, which is currently 13 years, on average.”

Improving gluten–free options

There is no cure for coeliac disease. The only treatment for the condition is to stick to a strict gluten–free diet for life. Coeliac UK works hard to highlight the importance of gluten–free provisions both in the home and out and about for people with the condition. Coeliac UK members benefit from the charity’s Venue Guide – which lists over 5000 venues that can cater for people with coeliac disease, and its Food and Drink Directory – which lists over 15,000 products that can be included in a gluten–free diet.

Seeing ‘gluten–free’ on a food label or menu provides instant reassurance for customers with coeliac disease, who need safe food options as the term is covered by gluten regulation EC41/2009 ensuring compositional standards.

Gluten freeOpening doors for coeliacs

The Food Information Regulation (EC 1169/2011) requires 14 allergens, including gluten–containing cereals (wheat, barley, rye and oats) to be emphasised in the ingredients list on all packaged foods including food service products.

Introduced in December 2014, the new rules introduce big changes for the catering industry too. Foods sold loose, such as in delis, bakeries, restaurants and cafés, must provide information on the 14 allergens when they have been used as an ingredient in dishes. For people with coeliac disease who require clear ingredient information in order to keep to their gluten–free diet, this new legislation is welcome when eating out. Providing gluten–free menu options gives caterers the opportunity to attract a growing customer base. Research has shown people with coeliac disease – and the family and friends with whom they eat out – are worth a potential £100 million a year to venues willing to provide dishes labelled gluten–free.

Many caterers have recognised this huge potential market and have gained Coeliac UK’s GF accreditation for the catering industry, which was launched in 2012. There are over 2500 GF–accredited venues, including many big national chains such as PizzaExpress, Domino’s and Frankie & Benny’s. Businesses have seen a positive impact since gaining the accreditation both in terms of business levels and positive consumer feedback and many more businesses are working towards this accreditation.

Caroline Quentin

With GF and allergen labelling becoming more commonplace, the outlook for people with coeliac disease managing a GF diet is encouraging. For operators, it is worth bearing in mind that, as more people become diagnosed, the need for safe gluten–free options will continue to grow.

Backing the campaign

Helping to spread the word about the campaign is actress and TV personality Caroline Quentin, the Charity’s new patron. Caroline, who is close to completing her own diagnosis journey, said: “Coeliac UK’s campaign to reach the half a million people still undiagnosed with coeliac disease really resonates with me because I struggled for years with constant stomach pains, vomiting and total exhaustion. I’m delighted to become the charity’s patron and to help those who, like me, have been in the dark too long about the cause of their pain and discomfort".

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