Coeliac disease (also called celiac disease) is an autoimmune condition which causes the immune system to react against the body’s own tissues. This reaction is triggered by eating gluten, which is a common protein found in wheat, oats, barley and rye. Gluten can only be absorbed into the body if it is eaten, not if it is touched or handled.
When someone who has coeliac disease eats a food containing gluten, this autoimmune reaction causes damage to the lining of the small intestine. Coeliac disease is thought to affect as many as 1% of the population, however only around 15% of people have been properly diagnosed.
Signs and symptoms
Symptoms can vary greatly from person to person, and range from mild to severe. Many of the signs may appear fairly non-specific, and can mimic other problems such as irritable bowel syndrome, food intolerances or even stress. Common symptoms of coeliac disease can include:
- diarrhoea, bloating or constipation
- persistent sickness
- persistant stomach pain or discomfort
- weight loss
- hair loss
- skin problems
- fertility problems
- recurrent miscarriages
Tests and diagnosis
It is essential for anyone suspecting they may have coeliac disease to carry on eating gluten whilst seeking medical help. This is because the diagnostic tests will look specifically for an autoimmune reaction to gluten in the diet. A proper diagnosis is essential as it will rule out any other causes, reduce the risk of ongoing complications and enable you to access help and support in adopting a gluten-free diet.
The first step is to visit your GP to make them aware of your symptoms. In adults, the doctor can order a blood test to look for antibodies created by the immune system against gluten. The specific antibodies that may be present in someone with coeliac disease are tissue transglutaminase antibody (‘tTGA’) and endomysial antibody (EMA).
Some people who have coeliac disease may not produce the usual antibodies. This is known as IgA deficiency. The National Institute for Health and Clinical Excellence has now produced guidelines on the diagnosis of coeliac disease, which recommend using specific blood tests called IgG EMA tests in people shown to have IgA deficiency.
The GP can also make a referral to a gastroenterologist for a gut biopsy, which involves passing a small camera or endoscope through the mouth via the stomach and into the small intestine, to look for damage that is caused by the autoimmune response to gluten. The procedure is usually fairly quick and an anaesthetic spray is used to numb the throat. The biopsy can be carried out under sedation to minimise any discomfort.
Genetic testing can be used to look specifically for HLA DQ2 and HLA DQ8 genes, which are found in around 30% of the general population – and in 90% of people with coeliac disease. Because some unaffected people will carry the same genes, this cannot provide a definitive diagnosis, however, it can be effective in helping to reach a diagnosis if other tests are unclear.
In children, the protocols are a little different, and the biopsy will not always be necessary. New guidelines have now been issued by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition, alongside Coeliac UK. These state that children with symptoms whose blood tests show a high level of antibodies and who carry the relevant genes can be diagnosed with coeliac disease without undergoing a biopsy. The first step is to ask the GP to refer your child to a paediatric gastroenterologist for testing.
Babies and young children
Coeliac disease is known to run in families, and it is thought that one in ten close relatives of anyone who is affected will be at risk of having the condition, so it is important to be aware of the symptoms.
Infant milk formulas are gluten free, and babies and young children who have coeliac disease will usually only begin to show symptoms once they have begun weaning onto foods containing gluten, such as rusks, biscuits, cereals, toast and pasta.
Babies with a family history of coeliac disease can begin to try gluten at six months of age, and there is no benefit in delaying its introduction any later than this.
Symptoms in very young children may include:
- Muscle wastage
- Bloating in the tummy
- Irritability or discontent
- Child not gaining weight
- Weight loss after previously growing well
If you are concerned that your child may be showing signs of coeliac disease, the first step is to contact your GP and ask for a referral to a paediatric gastroenterologist for testing.
If you or your child has been diagnosed with coeliac disease, the only treatment is to follow the gluten free diet. Gluten is found in foods containing wheat, oats, barley and rye, and it is perfectly possible to have a healthy, varied and balanced diet that is completely gluten free. It is a good idea to talk to a dietician, and your doctor can organise a referral for you or your child. Alternatively, you can make contact with a specialist dietician via Coeliac UK.
Dietary staples that are naturally free from gluten include rice, potatoes, corn (maize), vegetables, fruit, meat, sugars and dairy products, and these can continue to form the basis of your diet.
Many foods such as bread and pasta are available in gluten free variations on prescription, and these will be free of charge for children, so discuss this with your GP as soon as you receive a diagnosis. In addition, all of the main supermarkets now stock a broad range of gluten free breads, rolls, biscuits, cakes, pizza bases, pasta and crackers, just to name a few. Baking ingredients such as plain or self-raising flour and baking powder are also widely available for home baking.
Coeliac disease and pregnancy
The most important dietary aspect of pregnancy if you have coeliac disease is to stick to the gluten free diet without exception. Cravings may or may not help with this, however there is now a wide range of gluten free products available that will be safe to eat. Always try to have a varied, balanced diet that is rich in iron and calcium.
Some people with coeliac disease will have especially low levels of folic acid and vitamin B12. It is therefore essential to take a gluten-free folic acid supplement for three months prior to conception, and a higher dose may be required during pregnancy, so this is something to discuss with your GP when you are thinking about becoming pregnant. Folic acid supplementation may help to mask the effects of vitamin B12 deficiency, so the midwife should order blood tests to monitor this.
If your baby will be born in hospital, tell the medical team about your gluten free diet, as the hospital should be able to cater for main meals. It is important to pack plenty of energy-boosting snacks in your hospital bag to take with you to have during and after labour, as hospital biscuits will not be gluten free. Remember that at breakfast time most hospitals offer either ordinary bread or toast, with the option of cereal that may contain barley, which again would not be gluten free. Ensure therefore that your hospital bag is well-stocked with alternatives that you enjoy.
Children and special diets
Some of the trickier aspects of managing any child’s special diet can arise around the times when parents cannot be there, such as playdates, time spent at nursery or preschool and children’s parties.
Nurseries and preschools often incorporate activities into their curriculum that may expose your child to gluten, such as sandwich-making and cookie-decorating. You will have the opportunity to explain your child’s dietary needs when they are enrolled, so ask the staff to give you advance warning of these activities taking place so that you can supply gluten free bread or biscuits for your child to use.
When it comes to parties and playdates, it is often easier when you know the birthday child and their parents well, because they may already be aware that your child is gluten free and will just need some more information. However well you know them, you will need to be very sure that they understand the foods – and ingredients – that may contain gluten, as well as the risks of contamination. If the party is being catered by the venue or play centre it will be safest to liase with them directly.
It is not unusual and perfectly acceptable for children following any kind of special diet to take their own food to parties, and you may sometimes find that your child is not the only one. A sandwich or mini pizza made with their usual bread, along with some suitable crisps and cake may not be too different from what the others are having. Certain sweets, chocolate, yoghurts, jellies and supermarket desserts will also be gluten free. Children can get involved and help to put their lunchbox together with a few favourites so that hopefully they will not feel left out.
If the birthday child is gluten free, the party can be catered with safe, enticing foods so that everyone can have the same and your child will not have to feel different. Coeliac UK is a fantastic resource for branded and supermarket products that are gluten free and perfect for parties. Buffet-style is ideal to cater for multiple tastes and any fussy eaters.
Once you have become used to following the gluten free diet at home, you will find it surprisingly easy to put together creative, varied and appealing menus, whether you are catering for family meals, special occasions or for your child’s entire class. Many bakeries now offer gluten free celebration cakes, and you can make your own cakes and nibbles using ready-blended gluten free flour that will cater for everyone.
by Helena, mum to Amalia, Luca and Sophiaautomim