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Detection of Coeliac Disease in Children at an All-Time Low

Geneva, Switzerland, 16 May, 2018

Coeliac disease is the most common food-related chronic disease among children in Europe, yet experts now believe that up to 80% of cases are undiagnosed.

With rising prevalence, undiagnosed coeliac disease leaves a large population at risk of developmental issues and long-term associated health complications. Despite being easy to detect and treat, diagnostic delays can often reach eight years.

The disease affects 1 in every 100 children in the majority of European countries and, in some countries, it can occur as frequently as 3 in every 100. It is a lifelong autoimmune condition, caused by an abnormal reaction to gluten – a protein found in wheat, barley and rye – grains that are very common in the European diet. It can occur at any age, including in babies when weaning once gluten has been introduced to their diet, in children and in adolescence. The only treatment for coeliac disease is a strict compliance to a gluten-free diet.

Sarah Sleet, Chair of the Association of European Coeliac Societies (AOECS), comments “In children, diagnosing coeliac disease as early as possible is essential for ensuring optimal growth, development and symptom management. There are many serious health complications if coeliac disease is left undiagnosed, including impaired weight gain, growth problems, delayed puberty, chronic fatigue and osteoporosis.”

To address this crisis, experts and patient organisations across Europe are calling upon healthcare providers and policymakers to facilitate the establishment of national detection programmes for earlier and more frequent identification of coeliac disease in children.

Experts from the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and representatives from the AOECS have developed a manifesto for change for paediatric coeliac disease. The manifesto includes the clarification of key symptoms and the identification of those children at a higher risk of developing the disease, in a framework that provides greater opportunity for earlier intervention and treatment.

“The lack of awareness of coeliac disease, in both members of the public and healthcare professionals, means that the diagnosed cases of the disease only represent a small fraction of the total number of people affected” states Luisa Mearin of ESPGHAN. “A significant challenge in recognising coeliac disease is the variation in the presentation and intensity of symptoms. Therefore, as well as encompassing children that present common coeliac disease symptoms, detection programmes must also facilitate effective diagnoses in children with a less severe clinical picture.”

International Coeliac Day takes place on 16 May, 2018. Organised each year by the AOECS, the day aims to raise awareness of the disease amongst the general public and healthcare professionals.

Notes to Editors

For further information or to interview a coeliac disease expert, please contact Luke Paskins at [email protected] or call the ESPGHAN Communications Team on: +44 (0) 1444 811 099.

To download the Paediatric Coeliac Disease Manifesto for Change, click here

To download an infographic on paediatric coeliac disease, click here

About ESPGHAN

The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) is a multi-professional organisation whose aim is to promote the health of children with special attention to the gastrointestinal tract, liver and nutritional status, through knowledge creation, the dissemination of science based information, the promotion of best practice in the delivery of care and the provision of high quality education for paediatric gastroenterology, hepatology and nutrition professionals in Europe and beyond. Find out more by visiting www.espghan.org

About the AOECS

Founded in 1988, the Association of European Coeliac Societies (AOECS) is an independent, non-profit organisation. It is the umbrella organisation of European national coeliac societies with currently 35 enrolled Member societies across Europe. AOECS represents people who are affected by coeliac disease or dermatitis herpetiformis (DH) and seeks to collaborate with international coeliac organisations worldwide.