The national charity for people with coeliac disease, will 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.
Is it Coeliac Disease?
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, www.isitcoeliacdisease.org.ukwill 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 of Coeliac Disease
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: www.isitcoeliacdisease.org.uk.
Half a million people with undiagnosed disease
Direct Access to a Personal Assessment Tool
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.”
Caroline Quentin, who is close to completing her own diagnosis journey after an initial positive blood test two years ago and more recently a genetic test, 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.”
Diagnosing Coeliac Disease
A confirmed medical diagnosis of coeliac disease enables people to receive appropriate follow-up care and support, as well as providing evidence for close family members to also be tested.
“Awareness of coeliac disease has increased greatly in recent years with the Charity’s Helpline supporting hundreds of callers seeking a diagnosis. Yet, around 500,000 people in the UK are still suffering unnecessarily. Please check your symptoms through our online assessment tool, and if you think you may have coeliac disease, go to your doctor and ask for a blood test but don’t stop eating gluten until you are tested otherwise critical follow up tests will not work,” Ms Sleet said.
Information on Coeliac Disease:
Coeliac disease is a serious illness where the body’s immune system reacts to gluten found in food, making the body attack itself.
Gluten is a protein found in wheat (including spelt), rye and barley. Some people are also sensitive to oats.
Obvious sources of gluten include breads, pastas, flours, cereals, cakes and biscuits.
Gluten is often used as an ingredient in many favourite foods such as fish fingers, sausages, gravies, sauces and soy sauce
Average time to diagnosis is 13 years
1 in 4 people diagnosed with coeliac disease had previously been diagnosed with IBS
Coeliac UK has a Helpline on 0845 305 2060 and further information can be found at www.coeliac.org.uk
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