Health risks to children with untreated Coeliac Disease highlighted

Children who have been undiagnosed or untreated with Coeliac Disease are at higher risk of developing autoimmune thyroid diseases or suffering stunted growth, a new report has found. 

They are also likely to have lower than average weight gain and to suffer from anaemia.

A leading paediatric consultant has called for more information for medical practitioners and clear guidelines for managing children with Coeliac Disease

A newly published research paper also outlines 37 recommendations for medical practitioners and affected patients

The report also finds that there is inadequate access to follow up care in Ireland.

Leading Paediatric Consultant, Alfonso Rodriguez-Herrera, above, will be addressing the lack of diagnosis and follow up care of coeliac sufferers in an Irish context when he speaks at The Coeliac Society’s inaugural Gluten Free Roadshow, October 8 in Tullamore, Co Offaly.

Dr Rodriguez-Herrera, of the department of Paediatrics in Saint Luke's General Hospital in Kilkenny, is part of a task-force of 34 authors members of the Special Interest Group on Coeliac Disease of The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) who recently published a position paper offering recommendations to improve follow-up of children and adolescents with coeliac disease and highlight gaps that should be investigated to further improve.

Mr Rodriguez-Herrera said: “When you look at the findings of the paper you realise how much work is needed to be done in the context of diagnosing and providing resourced aftercare for children in Ireland. Currently we do not test enough for coeliac disease and when we do find a child suffering, it can take, in some cases, between 12 and eighteen months for any follow up care to be implemented. In our paper we recommend that this happens within 3 to six months and for the long-term health of the child that there are regular follow up consultations. This is something that there is little evidence that outside some hospital settings is happening due to a lack of qualified dietetic resources across the whole medical system.”

According to the research children left undiagnosed or inadequately treated through follow up consultation are at a higher risk of developing autoimmune thyroid diseases, have stunted growth, lower than average weight gain, can suffer from anaemia and can suffer emotional difficulties dealing with managing the disease.

Alfonso Rodriguez-Herrera said: "There should be an emphasis amongst all medical practitioners to regularly test for coeliac disease particularly if a family member or relative has been confirmed as a sufferer. Early diagnosis and regular follow up can have positive outcomes. For example, we identified in the paper that for a child with impaired growth at the time of diagnosis, catch-up growth in weight and height is usually expected within six months after starting a gluten free diet, after which, depending on the patient’s age and a continuance of the diet for 1-2 years, can result in expected height been reached".

Also addressing the attendees at the Gluten Free Road show will be Coeliac Society consultant dietitian Sarah Keogh who highlights the lack of resources available to those diagnosed.

Ms Keogh said: "As we don’t have a central register for the disease in Ireland, it can be difficult to accurately identify how many people are Coeliac. However, based on international studies we can stand over the fact that there are at least 63,500 children and adults who are currently undiagnosed and at risk of further complications from the disease living in Ireland today. Of these circa 12,000 are children.

"My own experience at the Coeliac Societies clinics shows that some of the children I meet have been waiting for up to two years to get proper advice on how to live with the disease after diagnosis. That’s two years where their growth may be stunted, or they are suffering associated illnesses that are sometimes very debilitating.

“This is wholly inadequate, and we should be making every effort to address this. Our current services are very under resourced, and we should be looking at changing this by establishing gastroenterology specialist dietitians at community level in the HSE. This will help to provide expert treatment not only for coeliac disease but also other gastro issues which are prevalent in Ireland. If the treatment for coeliac disease was a drug, patients would get it straight away.  Why is it acceptable to delay treatment of a medical condition just because that treatment is diet?”

The Coeliac Society’s inaugural Gluten Free Roadshow – which takes place on October 8 in Tullamore, Co Offaly – will provide information and advice on diagnosis and living gluten free for people who are, or suspect they are, coeliac or gluten intolerant. The show runs from 11am to 4.30pm at the Tullamore Hotel and will have a limited attendance.

For more information on the event and the Coeliac Society of Ireland, visit www.coeliac.ie or follow them on Twitter, Instagram, and Facebook.