Coeliac Disease (Gluten Enteropathy)

The symptoms associated with coeliac disease can vary from person to person and can also vary in severity. They may be gut–related or more general and located outside of the gut.

There are other symptoms to look out for in babies and young children including faltering growth or a change in growth pattern and irritability.

Symptoms of coeliac disease can be mistaken for other conditions such as irritable bowel syndrome (IBS) or wheat intolerance.

A proportion of people with coeliac disease experience no symptoms at all (asymptomatic coeliac disease), however, the damage caused by gluten is still evident within their gut.

Babies

Symptoms first develop soon after weaning when the baby starts eating solid foods containing gluten. The baby may fail to grow or to gain weight (malnutrition). As food is not being absorbed properly, the stools (poo) may be pale and bulky. Smelly diarrhoea may occur. The abdomen (tummy) may become swollen. The baby may be sick (vomit) repeatedly.

Older children

The symptoms of coeliac disease in older children may be similar to those in babies. Poor absorption of food may cause deficiencies of vitamins, iron and other nutrients. This may cause anaemia and other problems. As the fat part of the diet is poorly absorbed, stools (poo) may be pale, smelly and difficult to flush away. Diarrhoea may develop. However, the symptoms may not be very typical or obvious. If the gut and bowel symptoms are only mild, then the first thing that may be noticed is poor growth.

Delayed puberty can also be caused by untreated coeliac disease.

Adults

Poor absorption of food may cause deficiencies of vitamins, iron and other nutrients and may make you feel tired and weak.

Common abdominal (gut) symptoms are:

• abdominal pain
• bloating and flatulence (passing wind)
• indigestion
• constipation
• vomiting (usually only affects children)

More general symptoms may include:

• fatigue (extreme tiredness), which may be a sign of iron deficiency anaemia or vitamin B12 folate deficiency anaemia
• unexpected weight loss
• an itchy, blistering rash called dermatitis herpetiformis can occur in some people with coeliac disease
• difficulty getting pregnant
• tingling and numbness in your hands and feet (peripheral neuropathy)
• disorders that affect co-ordination, balance and speech (ataxia)
• swelling of the hands, feet, arms and legs caused by a build-up of fluid (oedema)

Symptoms may then be mild, or not typical, and there is often an overlap with symptoms of other conditions such as irritable bowel syndrome (IBS). As a result, there may be a delay before the diagnosis is made.

The average time from first symptoms to diagnosis is 13 years in the UK.

Some people with coeliac disease do not have any gut symptoms at all. They are tested either because they are at a higher risk than normal of developing it or because they have developed a condition that could be a complication of the disease, such as osteoporosis or gluten ataxia (see above).

Coeliac disease is an autoimmune condition. This is where the immune system (the body’s defence against infection) mistakenly attacks healthy tissue.

In coeliac disease, the immune system mistakes substances found inside gluten as a threat to the body and attacks them. This damages the surface of the small bowel (intestines), disrupting the body’s ability to take in nutrients from food.

When you look at a normal small intestine under the microscope, you will see vast numbers of tiny finger like projections sticking up from the surface. These are villi and their purpose is to increase the absorption of nutrients from our diet. In a person with coeliac disease, the villi are damaged by inflammation, they will look shorter and stubbier meaning that fewer nutrients pass into the bloodstream. In more severe cases, they can barely be seen at all so the lining of the intestine looks quite flat. This is known as villous atrophy.

If patients with coeliac disease stop eating gluten, the villi can recover.

It’s not entirely clear what causes the immune system to act this way, but a combination of genetics and the environment appear to play a part.

Gluten is a dietary protein found in 3 types of cereal:

• wheat
• barley
• rye

Gluten is found in any food that contains those cereals, including:

• pasta
• cakes
• biscuits
• breakfast cereals
• most types of bread
• certain types of sauces
• some ready meals

In addition, most beers are made from barley.

Some people with coeliac disease find that eating oats can trigger symptoms. This is because some oats may be contaminated by other grains during production. Oats also contain a protein that is similar to gluten (avenin) and whilst most people with coeliac disease can tolerate avenin, there is evidence to suggest that a small number will be sensitive to it even in the absence of gluten or gluten contamination.

Over the past few years, it has become clear that coeliac disease is much more common than we used to think.

It’s not known why people develop coeliac disease. It also is not clear why some have mild symptoms while others have severe symptoms. However, the factors described below are known to increase your risk of developing coeliac disease.

Family history – coeliac disease often runs in families. If you have a close relative with the condition, such as a parent or sibling, your chance of also getting it is increased. This risk is approximately 10% for those with a family history. If you have an identical twin with coeliac disease, there’s a 75% chance you’ll also develop the condition.

Environmental factors – You’re more likely to develop coeliac disease if you had a digestive system infection (such as a rotavirus infection) during early childhood. There’s also evidence that introducing gluten into your baby’s diet before they’re 3 months old may increase their risk of developing coeliac disease. Most experts recommend waiting until your child is at least 6 months old before giving them food containing gluten. There might also be an increased chance of babies developing coeliac disease if they’re not being breastfed when gluten is introduced into the diet. Read more about your baby’s first solid foods.

Other health conditions – several other health conditions can increase your risk of developing coeliac disease, including:

• type 1 diabetes
• thyroid conditions
• ulcerative colitis – a digestive condition that causes inflammation of the colon (large bowel)
• neurological disorders (which affect the brain and nervous system) such as epilepsy
• Down’s syndrome and Turner syndrome

It’s unclear whether these health conditions directly increase your risk of developing coeliac disease, or whether they and coeliac disease are both caused by another, single underlying cause.

Routine testing for coeliac disease is not recommended unless you have symptoms or an increased risk of developing them.

The 2015 guidance published by the National Institute for Health and Care Excellence (NICE) provides details about when testing for coeliac disease should be carried out.

Adults or children should be tested if they have the following signs or symptoms:

• persistent unexplained gastrointestinal symptoms, such as feeling sick and being sick
• faltering growth
• prolonged fatigue (feeling tired all the time)
• unexpected weight loss
• severe or persistent mouth ulcers
• unexplained iron deficiency anaemia, vitamin B12 or folate deficiency anaemia
• type 1 diabetes, at diagnosis
• autoimmune thyroid disease (an underactive thyroid or overactive thyroid), at diagnosis
• irritable bowel syndrome (IBS) (in adults)

Testing is also recommended if you have a first-degree relative (parent, sibling or child) with coeliac disease.

While being investigated for coeliac disease, you’ll need to eat foods containing gluten to ensure the tests are accurate. You should also not start a gluten-free diet until the diagnosis is confirmed by a specialist, even if the results of blood tests are positive. It is recommended that you consume gluten in at least one meal per day for six weeks prior to undergoing these tests in order that the results obtained are accurate.

New advice has been released by the British Society of Gastroenterology about the tests needed to diagnose coeliac disease. These will be published in their new guidelines to be issued toward the end of 2021.

These new recommendations have been supported by Coeliac Disease UK.

Traditionally, the diagnosis of coeliac disease has been a two-stage process, involving blood tests followed by (if positive) an endoscopy (a camera test to look inside your stomach & gut) plus biopsy (during which a small piece of gut tissue is removed for examination under a microscope).

Non-essential endoscopies were paused during the recent coronavirus pandemic, creating a huge backlog of people waiting for diagnosis. This has led to a specialist review into the role of endoscopy which has concluded that many adults can be diagnosed on blood test results alone.

Not everyone will be suitable for the no-biopsy approach. To qualify you need to be under the age of 55 with symptoms of coeliac disease and:

• An endoscopy isn’t required to rule out other conditions.
• You have antibody levels (IgA tissue transglutaminase) at least 10 times the upper limit of normal.
• You have a second positive antibody blood test (endomysial antibodies (EMA) or tissue transglutaminase if EMA isn’t available).

Your GP can do the initial blood tests, but a specialist needs to take the decision as to whether you still require an endoscopy and biopsy.

The new recommendations are good news, as they will shorten the time people with suspected coeliac disease have to wait for confirmation. This means they will be able to start a gluten-free diet earlier and avoid lengthy periods of illness.

Most children have been diagnosed without biopsies since 2013.

Other Investigations

Once diagnosed with coeliac disease, you may also have other tests to assess how the condition has affected you so far.

You may have further blood tests to check the levels of iron and other vitamins and minerals in your blood. This will help determine whether coeliac disease has led to you developing anaemia (a lack of iron in your blood) as the result of poor digestion.

If you appear to have dermatitis herpetiformis (an itchy rash caused by gluten intolerance), you may have a skin biopsy to confirm it. This will be carried out under local anaesthetic and involves a small skin sample being taken from the affected area so it can be examined under a microscope.

A DEXA scan may also be recommended in some cases of coeliac disease. This is a type of X-ray that measures bone density. It may be necessary if your GP thinks your condition may have started to thin your bones.

In coeliac disease, a lack of nutrients caused by poor digestion can make bones weak and brittle (osteoporosis). A DEXA scan is not a test for arthritis, and only measures bone density to see whether you’re at risk of bone fractures as you get older.

Coeliac disease is treated by excluding foods that contain gluten from your diet. This prevents damage to the lining of your intestines and the associated symptoms, such as diarrhoea and stomach pain.

If you have coeliac disease, you must stop eating all sources of gluten for life. Your symptoms will return if you eat foods containing gluten, and it will cause long-term damage to your health.

This may sound difficult to do, but a dietician can give you help and advice about ways to manage what you eat.

Your symptoms should improve considerably within weeks of starting a gluten-free diet. However, it may take up to 2 years for your digestive system to heal completely.

With coeliac disease, you’ll no longer be able to eat foods that contain any barley, rye or wheat, including farina, gram flour, semolina, durum, cous-cous and spelt.

Even if you only eat a small amount of gluten, such as a spoonful of pasta, you may have very unpleasant intestinal symptoms. If you keep eating gluten regularly, you’ll also be at greater risk of developing complications, such as osteoporosis and some types of cancer in later life.

Find out more about the complications of coeliac disease.

Gluten is not essential in your diet; it can be replaced by other foods. There are many gluten-free versions of common foods such as pasta, pizza bases and bread available in supermarkets and health food shops.

Many foods, such as meat, vegetables, cheese, potatoes, and rice, are naturally free from gluten so you can still include them in your diet.

The following is a general guide:

Foods containing gluten (not safe to eat)

• bread
• pasta
• cereals
• biscuits or crackers
• cakes and pastries
• pies
• gravies and sauces

It’s important to always check the labels on the foods you buy. Many foods (particularly processed foods) include additives which contain gluten, such as malt flavouring and modified food starch.

Gluten may also be found in some non-food products, including lipstick, postage stamps and some medicines.

Cross-contamination can happen if gluten-free foods and foods that contain gluten are prepared together or served with the same utensils.

Gluten-free foods (safe to eat)

• most dairy products, such as cheese, butter, and milk
• fruits and vegetables
• meat and fish (although not breaded or battered)
• potatoes
• rice and rice noodles
• gluten-free flours, including rice, corn, soy, and potato flour

By law, food labelled as gluten-free can contain no more than 20 parts per million (ppm) of gluten.

For most people with coeliac disease, these trace amounts of gluten will not cause a problem. However, a small number of people are unable to tolerate even trace amounts of gluten and need to have a diet completely free from cereals.

The Coeliac UK website has more information about shopping for gluten-free foods, and advice about living a gluten-free lifestyle.

If you have been referred for a specialist opinion your details will be reviewed and it may be recommended that you are seen by a hospital clinician. Information to support you in choosing your preferred hospital, including waiting times can be found using the links below.

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