For Families and Carers : Coeliac disease

We thought it was time to raise awareness about Coeliac Disease which is a condition that people with Down’s syndrome are more susceptible to.  It is a condition that may be overlooked and symptoms too readily explained away as ‘just part of Down’s syndrome’.  So constipation, which may be a symptom of Coeliac Disease, may be put down to low muscle tone rather than the person being given a proper medical examination.

What is Coeliac Disease?


With this condition, a person has a bad reaction to gluten which is a protein found in wheat, barley and rye. The wall of the small bowel (intestines) becomes inflamed and its lining becomes flat and this makes it harder for the body to absorb vitamins, minerals and calories.  Coeliac Disease is usually diagnosed in childhood, but it can develop at any age even if you haven’t previously shown any signs of having the condition.

Is Coeliac Disease more common in people with Down’s syndrome?


Coeliac Disease is an autoimmune condition and we know that, compared with the general population, people with Down’s syndrome have a higher chance of developing certain autoimmune conditions.

Autoimmune conditions are diseases where the immune system, the body’s defence mechanism against infection, attacks parts of the body in the same way that it would attack a germ. With Coeliac Disease the immune system wrongly identifies certain substances found in gluten as a threat to the body and attacks them. This is what causes the damage to the small bowel.

The DSA are collaborating with a research team at the University of Bristol who are investigating Feeding and Autoimmunity in Down’s syndrome. The team is looking for new parents willing to complete a questionnaire about their child’s feeding and health as a young baby and at six and twelve months. They will also ask about the child’s health yearly after this until the age of 5 years old. It is hoped that the study will help us understand why children with Down’s syndrome are more likely to experience problems with their hormones and their gut, help reduce this risk and lead to the development of new treatments to help with feeding. Further information about the study can be found here.

What to look out for


Here are some of the more common symptoms of Coeliac Disease

Diarrhoea (which may be quite smelly)

Weight loss

Abdominal pain/discomfort

Passing wind and bloating

Feeling tired, lack of energy or motivation (because the body is having difficulty taking in nutrients from food)

In children, not growing at the expected rate

As with any medical condition that occurs, parents/supporters should never allow symptoms to be dismissed because a person has Down’s syndrome. Conditions such as Coeliac Disease can be managed, and its effects reduced, once properly diagnosed.

There can, of course, be other reasons for these symptoms to occur rather than because someone has Coeliac Disease.  If someone with Down’s syndrome is showing some of these symptoms, it’s always a good idea to get them checked out with their GP.

How is the condition diagnosed?


The process of diagnosing Coeliac Disease starts with an assessment by a GP of a person’s symptoms and a physical examination. The GP may then arrange for a blood sample to be taken to test for antibodies that are usually present in people who have Coeliac Disease.

We know that some children and adults with Down’s syndrome will find having a blood test difficult. Take a look at our blog about children with Down’s syndrome giving blood samples here. The blog contains tips and ideas that you can try to make the experience easier for your child. This blog piece has been extended to include adults and turned into an article for the current DSA Journal.  Find out how to receive DSA’s Journal here.

If the antibodies are present, the GP will make a referral for a biopsy of the gut. This will usually be performed by a Gastroenterologist and involves a flexible tube with a small video camera (endoscope) being fed through the mouth and down into the small bowel where a sample of tissue will be taken for analysis. A local anaesthetic or sedative may be given for this procedure to help the patient relax. The biopsy is the only way to be absolutely certain that a person has Coeliac Disease.

It is possible to have Coeliac Disease and not have the antibodies in your blood. If symptoms continue, the GP may still make a referral for a biopsy anyway.

Should people with Down’s syndrome be regularly screened for Coeliac Disease?


At the moment there is no formal Coeliac Disease screening programme in the UK for people with Down’s syndrome.  If there is any evidence (even if relatively minor) to suggest that a person may have the condition, their GP should be asked to carry out screening.

We suggest that Coeliac Disease is discussed as part of an Annual Health Check. Everyone with Down’s syndrome over the age of 14 years is entitled to a free Annual Health Check with their GP.

Information for GPs about Coeliac Disease can be found here under ‘Gastrointestinal Disorders’

Information about Annual Health Checks can be found here

How is Coeliac Disease treated?


Once the diagnosis has been made, the person with Down’s syndrome will need a gluten-free diet because even a small amount of gluten can cause the symptoms already discussed.  This means wheat, barley and rye should be avoided. It is important that a gluten-free diet is balanced and healthy. Your GP can give help and advice about managing with a new gluten free diet. You may be referred to a dietician for support and advice. It may also be a good idea to avoid oats for a while; seek advice about this.

Some people may need to take vitamins and minerals while the body repairs itself.

How will my son/daughter cope with their new diet?


We know a number of adults who, with support, cope very well with sticking to a gluten-free diet. In fact the tendency of people with Down’s syndrome towards sameness and repetition can be usefully employed in some individuals to make sure they stay on track with their new diet. To stick to the diet, the person needs to learn about the foods and other non-food substances (e.g. some medications, lipsticks, stamps), that may contain gluten. Most people will need help and support with this to varying degrees.

Visual supports can be useful to help teach about the new diet; these could include a resource around recognising gluten-free foods and packaging labels. There is an internationally recognised ‘Crossed Grain’ Symbol that is found on packaging for gluten-free foods.  It may be useful to think about how to give your son/daughter the means of explaining that they have Coeliac Disease. This may be through teaching them the words they need to know and/or giving them a way to let strangers know about their Coeliac Disease (e.g. a laminated card with gluten free written on it to present to a waiter or shop assistant).

Resources


DSA

‘Gastrointestinal problems in children’ can be downloaded here

Other

Coeliac UK

Easy read information about having an endoscopy – an example can be found here