Coeliac Disease

Gluten is found in wheat, rye and barley. These are the basis of pasta, bread, pastries, biscuits, beer, couscous, breakfast cereal and it can be used as a thickening or coating agent in many sauces, soups or ready meals. Oat products may also cause symptoms to flare for some people.

Coeliac disease is common: it affects about 1 in 100 people in the UK. Coeliac disease can start at any age and – like most autoimmune diseases – it's not known exactly why it occurs. Females are more likely to suffer, and it can run in families. It’s also more likely with certain other autoimmune conditions, such as Type 1 diabetes.

What are the symptoms of coeliac disease?

There is a very wide range of possible symptoms that coeliac disease can cause. In general, doctors divide these into gastrointestinal problems and those caused by malabsorption, and people of different age groups tend to present with different features. In infants there is usually chronic diarrhoea, poor appetite and weight gain, abdominal distension and muscle wasting.

In older children as well as poor appetite and poor growth there may be altered bowel habit such as diarrhoea or constipation, or anaemia. Tiredness and irritability are common and adolescents may appear not to be growing properly. The usual symptoms seen in adults are of diarrhoea, weight loss and fatigue as well as a clinical anaemia (low blood count). Occasionally dentists may suspect coeliac disease by finding defects in the teeth in enamel or there being chronic mouth ulcers present.

One of the problems with coeliac disease is that many people with gluten sensitivity have few or no symptoms and so there are undoubtedly many people walking around suffering from coeliac disease who are unaware of it. In these people the condition usually only comes to light if a close relative is diagnosed with it or if they have a blood test for other reasons in which then suggests the diagnosis.

If you or your child have symptoms of coeliac disease, you should book a routine appointment with your doctor. Keep a food and symptom diary to take along to your consultation. You should not try cutting out gluten from your diet until after you have had a diagnosis, as it makes tests less accurate.

The doctor will ask you about your symptoms, any other conditions and relevant conditions that run in your family. The doctor may examine your tummy and any rashes and they are likely to order blood tests. There's a blood test specifically for coeliac disease – if this is positive, you will be referred to a specialist, a gastroenterologist, who will confirm the diagnosis. They will use a flexible camera from the mouth to pass into the gut (an endoscopy or gastroscopy), and they can take a tissue sample from the gut lining. This is less scary than it sounds. If this confirms coeliac disease, you will be offered further information and support, including a dietician’s advice on following a gluten-free diet.

Essentially, a gluten free diet involves excluding all foods containing wheat, rye or barley. Although less clear, most consultants advise omitting oats as well since some brands may obtain gluten. This can initially appear a daunting prospect since gluten is present in cakes, biscuits, bread, pasta, and many puddings, sauces and soups. However, gluten free flour, bread, biscuits and pasta are all available. Many sufferers - especially teenagers - sometimes feel different from other people and restricted when they eat out with friends and family. However, with determination and understanding from other people this becomes much less of a problem as time goes by in most cases. Fruit, fresh meat, dairy products and vegetables are naturally gluten-free, and rice noodles and corn pasta are acceptable alternatives.

The damaging effect of gluten on the small intestine is life-long and so the diet must also be viewed as being for life. Many people, especially adolescents who have had the disease since childhood, feel so much better once they have changed their diet that they believe themselves to be cured. This is unfortunately not the case as symptoms will recur if gluten is introduced into the diet again. Occasionally, if the diagnosis is in doubt or there is only a minimal improvement in symptoms on a gluten-free diet then gluten may be introduced back into the diet and further biopsies taken to firmly establish a diagnosis.

How do I avoid gluten when food shopping?

Look out for the gluten-free label for foods guaranteed to contain no gluten, and you may find gluten alternatives such as wheat-free bread and flour. Many supermarkets have an entire aisle devoted to gluten-free foods. Supplements are also available to boost your vitamin B stores or fibre needs, and to replace calcium and vitamin D.

What are the possible complications of coeliac disease?

Small bowel lymphoma

This is a rare tumour of the small bowel but its incidence is estimated to be much greater in patients with coeliac disease who do not stick to a gluten-free diet. This risk is greatest when coeliac disease has been diagnosed in later life but adhering to the diet reduces this risk.

Osteoporosis (bone thinning)

Up to half of all patients with coeliac disease may develop osteoporosis and it is certainly more common here than in the general population. To reduce the risk of osteoporosis as much as possible it is essential to stick to a strict gluten-free diet, make sure that there is an adequate dietary intake of calcium, stop smoking and avoid excess alcohol. Regular low impact exercise will help and your doctor may suggest calcium and vitamin D supplements or hormone replacement therapy if you are female.

Fertility problems

Untreated coeliac disease can cause infertility in women as well as shortening a woman's reproductive period. Such women also tend to begin periods later and their menopause sooner than untreated patients. Babies born to women with untreated coeliac disease during pregnancy are often of a low birth weight and have shortened breastfeeding periods. The disease may appear for the first time during pregnancy and should always be considered if there is diarrhoea and weight loss during this time. Recurrent miscarriages may also be a sign of untreated coeliac disease but a proper gluten-free diet effectively reduces these additional risks. It is however still only sensible that before and during pregnancy women with gluten sensitivity should take an additional supplement of folic acid.

Dermatitis herpetiformis

Although not a long-term problem as such, this is an intensely itchy and blistering skin eruption caused by gluten sensitivity. Most patients with this rash have a mild form of coeliac disease only and a gluten-free diet treats both coeliac disease and the skin rash.

How should people with coeliac disease be followed up?

Coeliac patients should be seen at least once a year, ideally by a dietician and a doctor with an interest in the disease. At each appointment patients are asked about their diet and any dietary problems they may be experiencing. They are also weighed and blood tests are taken for a full blood count and antibody analysis. These antibody tests are very useful to assess how strictly someone is sticking to their diet since they are raised if significant amounts of gluten are being eaten. Most coeliac patients go from year to year with no problems at all but if there is any unexplained diarrhoea, weight loss, abdominal pain or anaemia on a strict diet then a consultant opinion is needed.