Cases of coeliac disease in children continue to rise – and continue to go undetected across Europe. AOECS and ESPGHAN are campaigning to change this, as Sarah Sleet and Dr Luisa Mearin explain.
Despite the presence of a rapid, cheap and easy-to-use diagnostic tool, coeliac disease in children continues to go undiagnosed throughout Europe, where it affects roughly one in 100 people.
Low awareness among both the public and the healthcare community means that as many as 80% of cases are being missed in children, leaving them vulnerable to serious associated health complications like growth difficulties, osteoporosis and delayed puberty.
This problem is especially urgent given that the prevalence of coeliac disease in children is rising, and particularly glaring given that the condition can be effectively managed throughout the life-course by strict compliance to a gluten-free diet.
That’s why in May, AOECS (Association of European Coeliac Societies) and ESPGHAN (European Society for Paediatric Gastroenterology, Hepatology and Nutrition) came together to urge healthcare providers and policymakers to take action to improve the diagnosis of coeliac disease in children by establishing national detection programmes.
Here, Health Europa speaks to Sarah Sleet (AOECS) and Dr Luisa Mearin (ESPGHAN) to discuss their ‘manifesto for change’, the importance of early identification, and the all-important paediatric coeliac disease symptoms to look out for.
What is to blame for the lengthy delays in diagnosis of coeliac disease in children?
Sleet: Coeliac disease has a broad range of symptoms that can be assigned to many other conditions, so people don’t necessarily think of coeliac disease when they see them. In traditional models, coeliac disease in children has been characterised by wasting away, gut problems, diarrhoea, and severe illness, but now we know that the presentation can be very broad ranging and include extra symptoms that don’t necessarily get picked up by the family doctor. In fact, research has recently come out of Finland which suggests that something like half of the children who present with coeliac disease don’t actually present with traditional gastrointestinal symptoms.
Mearin: It’s quite difficult to change the traditional image of coeliac disease in children. Almost every day I encounter young doctors who discount coeliac disease because a patient is growing properly, even though we know that most children with coeliac disease do grow properly and actually the most frequent symptom is abdominal pain.
Sleet: There is also still a great deal of misunderstanding about how common coeliac disease is. If you ask a young doctor what they think the prevalence of coeliac disease in children is, they’ll likely say one in 1,000, one in 3,000 – even one in 10,000. Many are noticeably shocked to discover it’s one in 100. Even relatively newly qualified doctors are not getting the message about how common this disease really is.
Mearin: That’s right – in the past, coeliac disease was considered a rare disease among young children. Now we know that it is a common disease among children of all ages, including adolescents.
Given how common coeliac disease is in children, why is awareness so low?
Sleet: Coeliac disease is up against a number of other conditions like cancer and Type 1 diabetes which tend to grab the headlines more because they often have poor outcomes for children. Some children with coeliac disease suffer very badly before they get diagnosed, but even so it is seen as a condition that’s controlled by diet and doesn’t involve any medication, which diminishes its seriousness in many people’s eyes. As a result, it hasn’t achieved the same level of attention from the public or among the medical community.
Mearin: Part of the problem also relates to the name of the disease: coeliac. In a number of countries in Europe the general public hasn’t got the slightest idea what coeliac means. Many more people are now aware that gluten can be unhealthy for some, but coeliac disease is a special condition of gluten intolerance that is very specific and should not be confused with simply gluten sensitivity. That is perhaps confusing.
Sleet: That’s why we’ve started talking about coeliac disease as part of a family of autoimmune conditions alongside Type 1 diabetes – because people have more of a grip of it then. At Coeliac UK, we have been tracking awareness among the UK public of the terms gluten-free and coeliac disease for a few years. Gluten-free has always been ahead in terms of public understanding of coeliac disease, but both have increased over the last five years or so, and in the last omnibus survey we did about a year and a half ago, the term coeliac disease had actually risen in terms of public recognition to 80%, up from 60% three years previously. That’s great; now we need to translate that recognition into actual understanding.
Why are AOECS and ESPGHAN calling on healthcare providers and policymakers to establish national detection programmes?
Mearin: Better education in medical schools is of course important to raise awareness among doctors, but it would take a lot of time to deliver results. That’s why we need to start convincing health policymakers to invest in national detection programmes and research projects on possible treatments.
Sleet: Ultimately, it’s a public health issue. Coeliac disease can have real consequences if not diagnosed early, yet it can so very easily be picked up via a simple blood test. Imagine if that was true of another disease that affects one in 100 people in the population. For me, it’s a no brainer – now we just need to make the case to policymakers.
Mearin: It is so important. The earlier coeliac disease is detected, the better it is for the child in question. The Netherlands is home to a research programme called Generation Rotterdam, which has found that children with undiagnosed coeliac disease already have osteoporosis and stunted growth at the age of just six. Nobody ever thought such complications could be related to coeliac disease, but now that we know they are, we must do even more to ensure the early diagnosis of coeliac disease in children in order to improve their overall health.
Is there any understanding of why the prevalence of coeliac disease has risen in children over recent decades?
Mearin: One possible explanation is the overall increase in autoimmune diseases in general – for example, cases of Type 1 diabetes are also rising. That could be related to the fact that we are living much cleaner lifestyles as a whole, which is resulting in fewer infections. That, in turn, is forcing the immune system to look elsewhere for work and so encouraging the development of autoimmune diseases.
The rise in coeliac disease has also been attributed to the fact that we are consuming more gluten-containing grains, but studies are divided on whether or not this is a cause. Others say that it is not the quantity of gluten that is being consumed but the fact that the gluten is more antigenic, but as far as I know that has never been proven.
The truth is, we don’t know exactly why coeliac disease is increasing in children; personally, I see it as part of the increase in autoimmunity in the population in Europe in general.
Sleet: There’s a lot of exciting work going on around that because it has quite serious implications for the health of the population as a whole. We’re coming to understand more and more about the relationship between immune development and the microbiome, which is opening up whole new avenues to explore.
How would you assess the level of research into coeliac disease?
Sleet: In terms of coeliac disease-specific research, there isn’t enough going on by a long shot. In the UK, we’ve very recently launched a new appeal to try and pull together a £5m (~€6m) research fund to drive forward research because, again, coeliac disease hasn’t to date been drug-treatable so doesn’t receive a lot of attention big pharma. What we’ve had to do is make the case that, actually, this is an important area and it is worth the investment. What we know about how the immune programme works in coeliac disease could be used as a model for many other autoimmune diseases, which is a strong case for extra investment – and hopefully that’s coming. There are certainly more research groups looking into potential treatments for coeliac disease now than there were five years ago, but, nevertheless, in comparison to other serious, lifelong conditions, a miniscule amount of money is going in, and we need more.
Mearin: It’s very interesting what Sarah said: even if we don’t know everything about how coeliac disease starts, we know a lot – in fact, it’s one of the diseases that we best understand. We’re at the point where we can almost predict which children will develop coeliac disease in high-risk families; once we understand how they develop it, we will also understand how to prevent it and will be able to develop new interventions and strategies against it which could also work for other conditions like diabetes. There is huge potential.
Coeliac disease in children – what to look out for
The symptoms of coeliac disease in children include:
• Failure to thrive;
• Weight loss;
• Stunted growth;
• Delayed puberty;
• Iron-deficiency anaemia;
• Nausea or vomiting;
• Abdominal pain;
• Chronic constipation;
• Recurrent mouth ulcers;
• Abnormal liver biochemistry;
• Chronic fatigue; and
• Dental defects.
Association of European Coeliac Societies (AOECS)
Dr Luisa Mearin
European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN)
This article will appear in issue 6 of Health Europa Quarterly, which will be published in August.