Coeliac Disease

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Introduction

Coeliac Disease

Coeliac disease is a common digestive condition where the small intestine becomes inflamed and unable to absorb nutrients.

It can cause a range of symptoms including diarrhoea, abdominal pain and bloating.

Coeliac disease is caused by an adverse reaction to gluten, a dietary protein found in three types of cereal:

  • wheat
  • barley
  • rye

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

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

In addition, most beers are made from barley.

This page covers:

Symptoms

Causes

Treatment

Complications

Who's affected

Diagnosis

Help and support

Symptoms of coeliac disease

Eating foods containing gluten can trigger a range of gut-related symptoms, such as:

Coeliac disease can also cause a number of more general symptoms, including:

Children with coeliac disease may not grow at the expected rate and may have delayed puberty

Read more about the symptoms of coeliac disease.

What causes coeliac disease?

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 absorb nutrients from food.

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

Coeliac disease isn't an allergy or an intolerance to gluten.

Read more about the causes of coeliac disease.

Treating coeliac disease

There's no cure for coeliac disease, but switching to a gluten-free diet should help control symptoms and prevent the long-term consequences of the condition.

Even if you have non-existent or mild symptoms, changing your diet is still recommended because continuing to eat gluten can lead to serious complications.

It's important to ensure that your gluten-free diet is healthy and balanced. An increase in the range of available gluten-free foods in recent years has made it possible to eat both a healthy and varied gluten-free diet.

Read more about treating coeliac disease.

Complications of coeliac disease

Complications of coeliac disease only tend to affect people who continue to eat gluten, or those who've yet to be diagnosed with the condition, which can be a common problem in milder cases.

Potential long-term complications include:

Less common and more serious complications include those affecting pregnancy, such as having a low-birth weight baby, and some types of cancers, such as bowel cancer.

Read more about the complications of coeliac disease.

Who's affected

Coeliac disease is a common condition that affects approximately one in every 100 people in the UK.

However, some experts think this may be an underestimate because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).

Reported cases of coeliac disease are two to three times higher in women than men. It can develop at any age, although symptoms are most likely to develop:

  • during early childhood - between eight and 12 months old, although it may take several years before a correct diagnosis is made 
  • in later adulthood - between 40 and 60 years of age

People with certain conditions, including type 1 diabetes, autoimmune thyroid disease, Down's syndrome and Turner syndrome, have an increased risk of getting coeliac disease.

First-degree relatives (parents, brothers, sisters and children) of people with coeliac disease are also at increased risk of developing the condition.

Diagnosing coeliac disease

Routine testing for coeliac disease isn't carried out in England.

Testing is usually only recommended for people at an increased risk of developing coeliac disease, such as those with a family history of the condition.

First-degree relatives of people with coeliac disease should be tested.

See diagnosing coeliac disease for more information about when testing for coeliac disease should be carried out. 

Help and support

Coeliac UK is a UK-based charity for people with coeliac disease.

Its website contains a range of useful resources, including information about the gluten-free diet, as well as the details of local groups, volunteering and ongoing campaigns.

The charity also has a telephone helpline, 0333 332 2033, open Monday to Friday from 9am to 5pm.

Symptoms

Symptoms

Symptoms of coeliac disease can range from mild to severe, and often come and go.

Mild cases may not cause any noticeable symptoms, and the condition is often only detected during testing for another condition.

Treatment is recommended even when symptoms are mild or non-existent, because complications can still occur.

Common symptoms

Diarrhoea is the most common symptom of coeliac disease. It's caused by the body not being able to fully absorb nutrients (malabsorption, see below).

Malabsorption can also lead to stools containing abnormally high levels of fat (steatorrhoea). This can make them foul smelling, greasy and frothy. They may also be difficult to flush down the toilet.

Other common gut-related symptoms include:

And more general symptoms may include: 

Malnutrition

If coeliac disease isn't treated, not being able to digest food in the normal way could cause you to become malnourished, leading to tiredness and a lack of energy.

Malnutrition in children can result in failure to grow at the expected rate, both in terms of height and weight. Children may also have delayed puberty.

Dermatitis herpetiformis

Although not a symptom of coeliac disease, if you have an autoimmune response to gluten, you may develop a type of skin rash called dermatitis herpetiformis.

The rash is itchy and has blisters that burst when scratched. It usually occurs on your elbows, knees and buttocks, although it can appear anywhere on your body.

It's estimated that around one in five people with coeliac disease also develop dermatitis herpetiformis.

The exact cause of dermatitis herpetiformis isn't known, but, as with coeliac disease, it's associated with gluten. Like coeliac disease, it should clear up after switching to a gluten-free diet.

Causes

Causes

Coeliac disease is caused by an abnormal immune system reaction to the protein gluten, which is found in foods such as bread, pasta, cereals and biscuits.

It's an autoimmune condition, where the immune system mistakes healthy cells and substances for harmful ones and produces antibodies against them (antibodies usually fight off bacteria and viruses).

In the case of coeliac disease, your immune system mistakes one of the substances that makes up gluten, called gliadin, as a threat to the body. The antibodies that are produced cause the surface of your intestine to become inflamed (red and swollen).

The surface of the intestine is usually covered with millions of tiny tube-shaped growths called villi. Villi increase the surface area of your gut and help it to digest food more effectively.

However, in coeliac disease, the damage and inflammation to the lining of the gut flattens the villi, reducing their ability to help with digestion.

As a result, your intestine isn't able to digest the nutrients from your food, which causes the symptoms of coeliac disease.

Oats

Some people with coeliac disease may 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 called avenin, which is similar to gluten. Most people with coeliac disease can safely eat avenin. However, there's some evidence to suggest a very small number of people may still be sensitive to products that are gluten-free and don't contain contaminated oats.

Increased risk

It's not known why people develop coeliac disease. It also isn't 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.

Research shows coeliac disease is strongly associated with a number of genetic mutations (abnormal changes to the instructions that control cell activity) that affect a group of genes called the HLA-DQ genes. HLA-DQ genes are responsible for the development of the immune system and may be passed down through a family.

However, mutations in the HLA-DQ genes are common and occur in about one-third of the population. This suggests that something else, such as environmental factors, must trigger coeliac disease in certain people.

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.

Also, there's evidence that introducing gluten into your baby's diet before they're three months old may increase their risk of developing coeliac disease.

Most experts recommend waiting until your child is at least six 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

A number of other health conditions can increase your risk of developing coeliac disease, including:

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.


Diagnosis

Diagnosis

Routine testing for coeliac disease isn't recommended unless you have symptoms or an increased risk of developing them.

Testing for coeliac disease involves having:

  • blood tests - to help identify people who may have coeliac disease
  • a biopsy - to confirm the diagnosis

These procedures are described in more detail below.

While being tested 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.

Blood test

Your GP will take a blood sample and test it for antibodies usually present in the bloodstream of people with coeliac disease.

You should include gluten in your diet when the blood test is carried out because avoiding it could lead to an inaccurate result.

If coeliac disease antibodies are found in your blood, your GP will refer you for a biopsy of your gut.

However, it's sometimes possible to have coeliac disease and not have these antibodies in your blood.

If you continue to have coeliac disease-like symptoms despite having a negative blood test, your GP may still recommend you have a biopsy.

Biopsy

A biopsy is carried out in hospital, usually by a gastroenterologist (a specialist in treating conditions of the stomach and intestines). A biopsy can help confirm a diagnosis of coeliac disease.

If you need to have a biopsy, an endoscope (a thin, flexible tube with a light and camera at one end) will be inserted into your mouth and gently passed down to your small intestine.

Before the procedure, you'll be given a local anaesthetic to numb your throat or a sedative to help you relax.

The gastroenterologist will pass a tiny biopsy tool through the endoscope to take samples of the lining of your small intestine. The sample will then be examined under a microscope for signs of coeliac disease.

Tests after diagnosis

If you're 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.

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 isn't a test for arthritis, and only measures bone density to see whether you're at risk of bone fractures as you get older.

Local groups

Many people feel overwhelmed when they're first diagnosed with coeliac disease. Switching to a gluten-free diet can be confusing, particularly if you've been eating foods that contain gluten for many years.

In the first few months after being diagnosed, many people accidentally eat foods that contain gluten, which may trigger a return of their symptoms.

You can learn more about coeliac disease and receive practical advice about switching to a gluten-free diet by contacting your local coeliac disease support group.

Support groups provide help and support for people with coeliac disease, including those recently diagnosed and those who've been living with the condition for years.

The Coeliac UK website provides further information as well as advice and details of support groups in your area.

NICE guidance

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:

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

Read the NICE guidance about the recognition, assessment and management of coeliac disease.

Treatment

Treatment

Coeliac disease is usually treated by simply excluding foods that contain gluten from your diet.

This prevents damage to the lining of your intestines (gut) and the associated symptoms, such as diarrhoea and stomach pain.

If you have coeliac disease, you must give up 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 daunting, but your GP can give you help and advice about ways to manage your diet. Your symptoms should improve considerably within weeks of starting a gluten-free diet. However, it may take up to two years for your digestive system to heal completely.

Your GP will offer you an annual review during which your height and weight will be measured and your symptoms reviewed. They'll also ask you about your diet and assess whether you need any further help or specialist nutritional advice.

A gluten-free diet

When you're first diagnosed with coeliac disease, you'll be referred to a dietitian to help you adjust to your new diet without gluten. They can also ensure your diet is balanced and contains all the nutrients you need.

If you have coeliac disease, you'll no longer be able to eat foods that contain barley, rye or wheat, including farina, graham flour, semolina, durum, cous cous and spelt.

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

Read more about complications of coeliac disease.

As a protein, gluten isn't essential to your diet and can be replaced by other foods. Many gluten-free alternatives are widely available in supermarkets and health food shops, including pasta, pizza bases and bread. Some GPs may provide gluten-free foods on prescription.

Many basic foods - such as meat, vegetables, cheese, potatoes and rice - are naturally free from gluten so you can still include them in your diet. Your dietitian can help you identify which foods are safe to eat and which aren't. If you're unsure, use the lists below as a general guide.

Foods containing gluten (unsafe to eat)

If you have coeliac disease, don't eat the following foods, unless they're labelled as gluten-free versions:

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

It's important to always check the labels of the foods you buy. Many foods - particularly those that are processed - contain gluten in additives, such as malt flavouring and modified food starch.

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

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

Gluten-free foods (safe to eat)

If you have coeliac disease, you can eat the following foods, which naturally don't contain gluten:

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

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 won't 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 about the law on gluten-free, as well as information and advice about a gluten-free diet and lifestyle.

Oats

Oats don't contain gluten, but many people with coeliac disease avoid eating them because they can become contaminated with other cereals that contain gluten.

There's also some evidence to suggest that a very small number of people may still be sensitive to products that are gluten-free and don't contain contaminated oats. This is because oats contain a protein called avenin, which is suitable for the majority of people with coeliac disease, but may trigger symptoms in a few cases.

If, after discussing this with your healthcare professional, you want to include oats in your diet, check the oats are pure and that there's no possibility contamination could have occurred.

You should avoid eating oats until your gluten-free diet has taken full effect and your symptoms have been resolved. Once you're symptom free, gradually reintroduce oats into your diet. If you develop symptoms again, stop eating oats.

Advice on feeding your baby

Don't introduce gluten into your baby's diet before they're six months old. Breast milk is naturally gluten free as are all infant milk formulas.

If you have coeliac disease, Coeliac UK recommends foods containing gluten are introduced gradually when a child is six months old. This should be carefully monitored. 

The Coeliac UK website provides support for parents.

Other treatments 

As well as eliminating foods that contain gluten from your diet, a number of other treatments are available for coeliac disease. These are described below.

Vaccinations

In some people, coeliac disease can cause the spleen to work less effectively, making you more vulnerable to infection.

You may therefore need to have extra vaccinations, including:

However, if your spleen is unaffected by coeliac disease, these vaccinations aren't usually necessary.

Supplements

As well as cutting gluten out of your diet, your GP or dietitian may also recommend you take vitamin and mineral supplements, at least for the first six months after your diagnosis.

This will ensure you get all the nutrients you need while your digestive system repairs itself. Taking supplements can also help correct any deficiencies, such as anaemia (a lack of iron in the blood).

Dermatitis herpetiformis

If you have dermatitis herpetiformis (an itchy rash that can be caused by gluten intolerance), cutting gluten out of your diet should clear it up.

However, it can sometimes take longer for a gluten-free diet to clear the rash than it does to control your other symptoms, such as diarrhoea and stomach pain.

If this is the case, you may be prescribed medication to speed up the healing time of the rash. It's likely that this will be a medicine called Dapsone, which is usually taken orally (in tablet form) twice a day.

Dapsone can cause side effects, such as headaches and depression, so you'll always be prescribed the lowest effective dose.

You may need to take medication for up to two years to control dermatitis herpetiformis. After this time, you should have been following a gluten-free diet long enough for the rash to be controlled without the need for medication. 

Complications

Complications

If you have coeliac disease, it's crucial you don't eat any gluten. If you have untreated or undiagnosed coeliac disease and you're still eating gluten, several complications can occur.

It's a common misconception that eating a little gluten won't harm you. Eating even tiny amounts can trigger symptoms of coeliac disease and increase your risk of developing the complications outlined below.

Malabsorption

Malabsorption (where your body doesn't fully absorb nutrients) can lead to a deficiency of certain vitamins and minerals. This can cause conditions such as:

Click on the links above for more information about the symptoms and treatments of these conditions.

Malnutrition

As coeliac disease causes your digestive system to work less effectively, severe cases can sometimes lead to a critical lack of nutrients in your body. This is known as malnutrition, and can result in your body being unable to function normally or recover from wounds and infections.

If you have severe malnutrition, you may become fatigued, dizzy and confused. Your muscles may begin to waste away and you may find it difficult to keep warm. In children, malnutrition can cause stunted growth and delayed development.

Treatment for malnutrition usually involves increasing the number of calories in your diet and taking supplements.

Read more about treating malnutrition.

Lactose intolerance

If you have coeliac disease, you're more likely to also develop lactose intolerance, where your body lacks the enzyme to digest the milk sugar (lactose) found in dairy products. Lactose intolerance causes symptoms such as bloating, diarrhoea and abdominal discomfort.

Unlike gluten in coeliac disease, lactose doesn't damage your body. But you may get some gut-related symptoms when you eat foods containing lactose, because you can't digest it properly.

Lactose intolerance can be effectively treated by not eating and drinking dairy products that contain lactose. You may also need to take calcium supplements - as dairy products are an important source of calcium, you'll need to compensate for not eating them.

Read more about treating lactose intolerance.

Cancer

Some research has suggested that having coeliac disease can increase your risk of developing certain types of cancer, including bowel cancer and lymphoma (cancer of the lymphatic system, which is part of the immune system).

The same research found people with coeliac disease have a lower risk of developing lung cancer and breast cancer, although the reasons for this are unclear.

It's estimated that people with coeliac disease are twice as likely to develop bowel cancer than the general population.

However, this is still a very small increase in risk - only one in every 200 people with coeliac disease will develop bowel cancer in the first 10 years after diagnosis.

The risk of developing cancer is thought to be highest during the first year after diagnosis, before dropping to normal as your gluten-free diet starts to take effect.

Whether or not you have coeliac disease, it's important to be aware of the symptoms of bowel cancer, which include:

  • blood in stools (faeces)
  • unexplained weight loss 
  • changes in your normal bowel habit that last more than four weeks 

See your GP if you develop these symptoms.

"I'm so glad I joined Coeliac UK"

"I'm so glad I joined Coeliac UK"

Shira Groombridge had unpleasant symptoms for eight years before she was diagnosed with coeliac disease, after being suddenly taken ill and losing two stone in three weeks.

"My symptoms were severely affecting my life. I had no energy, lots of headaches, earache and stomach ache, and I was continually bloated and constipated. My doctor thought I had irritable bowel syndrome (IBS). Every now and then I'd have to take to bed with sickness and diarrhoea, and he would just put it down to a virus and give me antibiotics.

"I was on holiday enjoying a meal out when I was taken ill. I suddenly felt very poorly and went to bed that night shivering. The next morning I ate some dry toast - obviously the worst thing to do, although I didn't know it at the time - and then later collapsed in the bathroom. I came straight home and spent the next three weeks in bed. I lived off yoghurt and plain rice and lost two and a half stone.

"After that I saw another doctor, who sent me straight to a haematologist for tests. I was told it wasn't anaemia and that there was no malignancy, but the consultant wanted to test for one more thing.

"I had a blood test, and the reading was so high my haematologist told me she was almost certain I had coeliac disease. I needed a biopsy to confirm it, but it still came as an awful shock.

"While I was relieved that it wasn't cancer, the word 'disease' was frightening. It was a very emotional time.

"My consultant gave me a leaflet and set me up with a dietitian. Meanwhile, I did my own research on the internet and came across the charity Coeliac UK. I called them and they were fantastic, a real shoulder to cry on. I don't know what I would have done without their helpline in those first few weeks.

"For a couple of months, I was on antidepressants. Because my vitamin B12 status was so low, I was experiencing a lot of shaking and panic attacks, and had to have B12 injections. I was also taking calcium and iron supplements.

"I had to be wary of everything I ate, and started off eating very plain food, such as rice, meat, fish, vegetables and fruit. The first monthly supermarket shop I did, armed with my excellent book of gluten-free products from Coeliac UK, took four hours because I was carefully reading every single label.

"I've even found that some manufacturers may make a product gluten-free in one size and not gluten-free in another. Thankfully, I get pasta, bread, rolls and savoury biscuits on prescription. If it wasn't for that, I wouldn't be able to afford gluten-free foods as they can be expensive.

"Eating out is a challenge, and I hate putting friends and family out. I didn't know about the risks of cross-contamination, either, until my dietitian told me that I needed a separate toaster and butter for my partner, for example. I have to be very careful.

"My recovery has been good. In the last year, I've put all the weight I lost back on, my blood results are good and my gut has healed. The only supplement I take is calcium to safeguard against osteoporosis. I'm so glad I joined Coeliac UK and I would advise anyone who's been recently diagnosed to join."