A guide to coeliac disease in children: causes, diagnosis and treatment
Written by:It’s believed that around 1 in 100 children in the UK have coeliac disease making it much more common than we previously thought. However, underdiagnosis of this condition is still a big concern and many children don't receive a proper diagnosis until they become adults.
Dr Assad Butt is a leading UK specialist in paediatric gastroenterology and nutrition who regularly treats children with this condition. In this article, he discusses why the disease develops, how you can get your child tested and why it is so important that your child follows a gluten-free diet if they receive a diagnosis.
What causes coeliac disease?
Coeliac disease is caused by an abnormal immune system reaction to gluten, a protein found in bread, pasta, cereals, etc. If a person with coeliac disease ingests gluten it causes inflammation and damage to the intestine.
It is believed that the immune system mistakes gluten as harmful to the body and produces antibodies to fight it, causing the surface of the intestine to become inflamed.
It isn’t really known why some children develop coeliac disease and not others, or why some kids only show mild symptoms, while others react more severely. We do know, however, that coeliac disease often runs in families and that a combination of genetic and environmental factors play a crucial role:
- Family history — Coeliac disease is strongly associated with certain genetic mutations that affect a group of genes called the HLA-DQ genes. Specific HLA-DQ2 and -DQ8 genes can be passed down through generations, so if the child has a parent or close relative with the disease, they are at an increased risk of developing it too (approximately 10% risk). However, the HLA-DQ genes associated with coeliac disease are also found in one-third of individuals who don’t have coeliac disease, so it is not fully understood why some children develop it and others don’t.
- Environmental factors — Gluten ingestion is essential, so children can only develop coeliac disease after weaning. The role of other triggers is unclear but digestive system infections during early childhood and giving your child food that is high in gluten from a very young age (before 3 months) might increase their risk of developing it.
Coeliac disease often gets confused with other conditions such as non-coeliac gluten sensitivity or gluten intolerance, where patients get abdominal symptoms after ingesting gluten. The difference is that this intolerance, or sensitivity, is more than likely temporary, from which they may grow out of, much like asthma or eczema and there is no damage to the intestine like there is in coeliac disease.
What are the symptoms of coeliac disease in children?
Coeliac disease is a multi-system disease and doesn’t just affect the gut. There is often skin, teeth, joint and bone involvement too - the gut is only really one aspect. The symptoms may not be obvious and can vary across different age groups:
- Abdominal pain
- Diarrhoea
- Decreased appetite
- Poor weight gain
- Bloating and gas
- Mouth ulcers
- For some children, it can delay growth or puberty
Other symptoms that can present outside of the gut include:
- Anaemia
- Itchy skin rash (dermatitis herpetiformis)
- Damaged or discoloured tooth enamel
- Liver abnormalities
- Fatigue
- Osteopenia
Symptoms can occur at any time - from the time of weaning and up to any age. However, some studies suggest that the majority of genetically susceptible children are likely to be identified typically by the age of 12 if they were to be tested for it, but routine screening tests for coeliac disease are not currently recommended. Many children are only diagnosed if they develop clear symptoms and after they have reached adulthood.
It can be difficult to diagnose coeliac disease in children as symptoms can be quite mild, and bellyache and abdominal problems are often common complaints from children, so parents and healthcare workers can easily overlook it. If a child is referred to me, I would always consider coeliac disease as a possible cause of their symptoms.
Could my child grow out of it?
The disease is considered a permanent, life-long condition which means, unfortunately, your child won’t grow out of it.
How is coeliac disease diagnosed?
A child is often led to a diagnosis because of their symptoms and, in recent times, increasingly after a family member is diagnosed. The gold standard for many years is carrying out a combination of antibody blood tests together with a biopsy of the intestine. The biopsy involves undertaking an upper gastrointestinal (GI) endoscopy, taking small ‘pinches’ of tissue (multiple biopsies) from the child’s intestine and examining it under a microscope to see if there is any damage with the characteristic features of coeliac disease.
The clinical accuracy and reliability of coeliac antibody tests are getting much better, so there is now the option, in some cases, to offer a non-biopsy diagnosis. This is usually preferable as it avoids the child having to receive general anaesthesia to undertake upper GI endoscopy. The ESPGHAN recently published guidelines around a non-biopsy diagnosis and there are certain criteria to meet which should be reviewed by a consultant with expertise in coeliac disease: It can be carried out if the child has very high antibody levels in the first blood test (tTG, tissue transglutaminase IgA antibody), followed by a second positive antibody blood test (endomysial Ig A antibody). Based on those two results, if there are high levels meeting the criteria, we can offer a non-biopsy diagnosis and the child can start the treatment.
Apart from symptoms, we always also ask about the child’s family history or other autoimmune conditions which might be associated (e.g. type 1 diabetes, thyroid disease).
It is important to note that the child must not go on a gluten-free diet before a firm diagnosis is established. This will mean undergoing all the recommended blood antibody tests with or without an intestinal biopsy. Keep them on a normal, gluten-containing diet throughout the testing process. If not, the results may be inaccurate and potentially miss a diagnosis.
What food should children with coeliac disease avoid?
If your child has been diagnosed with coeliac disease, they need to follow a strict, gluten-free diet. Gluten can be found in wheat, barley, rye and the derivatives of these grains, such as malt and yeast. Here are some commonly eaten foods that contain gluten:
- Pasta
- Bread
- Crackers
- Biscuits
- Cereals
- Couscous
- Certain seasonings
You can often find gluten-free alternatives to many of these foods in supermarkets.
Many parents find themselves confused about oats, but they are usually ok. Sometimes, oats get contaminated with gluten down the factory food production line, however, eating pure oats seems to be fine for most children. Unfortunately, though, they are often quite hard to find. At the beginning (typically first 12-18 months), we prefer to restrict them from the child’s diet and if all is well, we recommend you slowly reintroduce them.
How important is it to follow a gluten-free diet?
It is absolutely fundamental. For some families, cutting out gluten from meals is a huge lifestyle change, but we know that if you stick to it, it will help your child and the success rate is close to 100%. A gluten-free diet is the only proven effective treatment for coeliac disease.
If it’s not managed properly, other complications could arise even if the child doesn’t show abdominal symptoms, such as osteopenia - a health condition that weakens bones and may result in greater fracture risk in later life. So, even if they aren’t showing symptoms, it’s important they still stick to the diet. You can reverse the effects of osteopenia in children with a strict gluten-free diet alone, but unfortunately not so effectively in those diagnosed as adults.
There is also a significantly increased risk of small bowel lymphoma (a very rare condition) developing in untreated coeliac patients. The longer the disease is left untreated, the higher the potential risk is. The condition typically develops in adults, therefore starting a gluten-free diet as a child can prevent this from presenting in the future, reducing the risk to a level seen in the normal population.
Is there any support available?
We know it can be confusing when trying to understand what your child can and can’t eat, so you might want to consider visiting a paediatric dietician who can go through all dietary requirements with you more specifically; this is essential if your child is diagnosed with coeliac disease.
Coeliac UK also offers a gluten-free diet guide on their website and support in regards to packaging labels, eating out, food shopping and travelling. You can also call them on 0333 332 2033 for more information.
There might even be coeliac support groups in your local area or region, so you should ask your GP for more information on this.
Are there other ways to manage the condition?
The short answer is no - the most well-proven and effective treatment is by following a strict gluten-free diet.
However, if the patient doesn’t respond to this treatment, then a doctor may decide to look at other ways to manage the disease by carrying out further investigations. Coeliac disease which does not respond to a gluten-free diet in children is extremely rare. In rare circumstances, other specialist treatments may be necessary (e.g. use of steroid).
Some interesting research has looked at some alternative ways of managing coeliac disease e.g. use of enzymes taken with food, that have the ability to digest the harmful component of gluten in the food and so reduce the damaging effect on the intestine. More research is needed to understand how effective this and other treatments may be in the future. Currently, there are no alternative clinically proven treatments for coeliac disease apart from a gluten-free diet.
If your child is displaying any of the symptoms mentioned in this article and you suspect they might have coeliac disease, you can make an appointment with Dr Assad Butt, by visiting his Top Doctors profile and checking his availability.
