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Coeliac Disease – searching for the undiagnosed half a million

Coeliac Disease – searching for the undiagnosed half a million

Coeliac UK, the national Charity for people with coeliac disease, is about to launch the UK's first online assessment to help fast track diagnosis among the half a million people in the UK living with undiagnosed coeliac disease.

The online assessment tool is a key initiative of the Charity’s new campaign, ‘is it coeliac disease?’, which is launching in Coeliac UK’s Awareness Week (11-17 May) and backed by the Charity’s new patron, actress Caroline Quentin.

The two-year campaign will highlight the most common symptoms of coeliac disease and prompt people experiencing these symptoms to ask themselves, ‘is it coeliac disease?’. A dedicated website, will host the new assessment questionnaire and provide detailed information about coeliac disease and outline the campaign activities.

Based on National Institute for Health and Care Excellence (NICE) guidelines, the new online assessment will give people more confidence to seek further medical advice from their GP. Upon completion of the assessment, they will receive an email with the results, which will indicate whether their symptoms are potentially linked to coeliac disease.

Coeliac disease is a serious autoimmune disease where the body’s immune system damages the lining of the small bowel when gluten, a protein found in wheat, barley and rye, is eaten. There is no cure and no medication; the only treatment is a strict gluten-free diet for life. Left untreated, coeliac disease can lead to a number of complications including osteoporosis and in rare cases even small bowel cancer.

Key symptoms caused by coeliac disease include: frequent bouts of diarrhoea, stomach pain and cramping, regular mouth ulcers, ongoing fatigue, lots of gas and bloating, nausea and vomiting, and unexplained anaemia.

One in 100 people in the UK has coeliac disease, with the prevalence rising to one in ten for close family members. However, current statistics show only 24% of those with the condition are diagnosed, leaving an estimated half a million people in the UK undiagnosed.

The ‘is it coeliac disease?’ campaign will also target healthcare professionals to refresh their knowledge of the condition and its symptoms, and will be promoted through radio and digital advertisements, social media activity and information in GP surgeries.

Outreach events will also take place across the country over the next two years providing more information for the general public to ask questions and gain advice from experts. Further details of these events can be found at:

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 an online assessment tool will put those who are suffering with the symptoms of undiagnosed coeliac disease on a pathway to diagnosis and avoid potentially life-threatening long-term health complications. As well as help reduce the unacceptable length of time to gain a diagnosis which is currently, on average, 13 years.”

Coeliac UK has a Helpline on 0845 305 2060; further information can be found at

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