Coeliac disease

Coeliac disease is a common autoimmune condition. When a person with it eats gluten, the immune system in their intestine (gut) reacts. This causes chronic inflammation.

Gluten is a protein found in wheat, barley and rye. So you'll find it in any food or drink made with those grains, such as:

• most types of bread
• pasta
• cakes
• biscuits
• crackers
• many breakfast cereals
• pastry
• certain types of sauces
• some types of ready meals
• most beers and lagers
• certain fruit squashes

Coeliac disease affects 1 person in every 100, but only about one third of them are ever diagnosed. It can be diagnosed at any age. Reported cases of coeliac disease are twice as high in women than in men.

Coeliac disease can cause symptoms in the digestive system and in other parts of the body. They can start at any age, but coeliac disease is most often diagnosed between the ages of 40 and 60 years.

Coeliac disease is more common in people who have certain other conditions, and in relatives of people who already have coeliac disease. Nobody knows exactly why people develop it.

Most people with coeliac disease have antibodies in their blood, so the first step in diagnosis is a simple blood test. If it's needed, the second step might be a biopsy.

Coeliac disease can be treated well with a gluten-free diet. If you follow a gluten-free diet and change your daily habits to match, you can keep the condition under control and live more comfortably.

If coeliac disease isn't treated, you have a greater risk of conditions like osteoporosis and cancer later in life.

Coeliac disease doesn't look the same in everyone. The symptoms can be mild in one person and severe in another, and some people have no symptoms at all.

Sometimes the symptoms are mistaken for something else, such as:

• irritable bowel syndrome (IBS)
• wheat intolerance
• stress
• just getting older

Coeliac disease can show itself in many ways. Some of the common symptoms are:

• severe diarrhoea, excessive wind and/or constipation
• persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
• recurrent stomach pain, cramping or bloating
• iron, vitamin B12 or folic acid deficiency
• anaemia
• tiredness
• sudden or unexpected weight loss (but not in all cases)
• mouth ulcers
• skin rash (dermatitis herpetiformis)
• depression
• repeated miscarriages
• neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet)

If you have any of these symptoms, speak to your doctor. You must keep eating gluten as part of your diet until you've been diagnosed.

A child with coeliac disease may not grow at the rate you'd expect, and may also reach puberty later than other children.

Doctors don't know exactly why some people develop coeliac disease, or why one person has mild symptoms while another has severe ones. Genetics and the environment may both play a part in why the condition develops.

Coeliac disease is more common in people who have certain other conditions, such as type 1 diabetes, Down's syndrome or autoimmune thyroid disease. It is also more common in close family members of someone who has coeliac disease, meaning their parents or brothers and sisters.

Coeliac disease often runs in families. If you have a close relative with the condition, such as a parent or sibling, your chance of developing it is higher.

The risk is about 10% for people with a family history, compared with 1% for someone who has no close relative with coeliac disease. If you have a close relative with the condition and you have symptoms, you should speak to your doctor.

If you have an identical twin with coeliac disease, there's an 85% chance you'll develop it too.

Coeliac disease can be diagnosed at any age, and both children and adults can show symptoms.

Many people wait a long time for an answer. On average, it can take 13 years to reach a diagnosis of coeliac disease.

Most people with coeliac disease have antibodies in their blood, and a blood test can pick these up. That's why the first step in diagnosing coeliac disease is often a blood test.

A blood test for coeliac disease should be offered if you have any of the following:

• type 1 diabetes
• autoimmune thyroid disease
• dermatitis herpetiformis
• irritable bowel syndrome (IBS)
• anaemia without an obvious cause
• certain symptoms related to your digestive system, such as frequent diarrhoea, abdominal pain or vomiting, nausea or sudden weight loss
• close relatives (parents, siblings or children) with coeliac disease

A blood test might also be offered if:

• you feel tired all the time
• a child is not growing as fast as expected
• you have other symptoms or conditions that sometimes occur in people with coeliac disease, such as mouth ulcers, particular types of problems with your bones or liver, Down's syndrome, Turner syndrome or persistent constipation

Blood tests for coeliac disease are not recommended for infants who haven't started to eat foods containing gluten.

Before you have a blood test for coeliac disease, you need to eat gluten-containing foods in more than one meal every day, and keep this up for at least 6 weeks before the test.

So eat your normal gluten diet for those 6 weeks, before any tests. In practice, that means more than one meal a day that includes gluten-based foods.

For a coeliac disease blood test, the doctor takes a sample of your blood and checks it for antibodies.

For the test to work, you must have been eating gluten-containing food in more than 1 meal a day for at least 6 weeks before it. If you haven't, the result may not be reliable.

Blood tests are 95% accurate at diagnosing coeliac disease.

If coeliac antibodies are found in your blood, you will need further tests, and your doctor will talk these through with you.

Your doctor will refer you to a coeliac service for confirmation of the diagnosis. Until all the investigations are complete, you should stay on a normal diet.

You can have coeliac disease and still have no antibodies in your blood, so a negative blood test doesn't always rule it out. If you keep having symptoms like those of coeliac disease, your doctor may still send you for a biopsy of your gut.

A biopsy can help confirm a diagnosis of coeliac disease. If your doctor refers you for one, it will be done in hospital. Usually a gastroenterologist carries it out. That's a doctor who specialises in treating conditions of the stomach and intestines.

If you need a biopsy for coeliac disease, the doctor will pass an endoscope down to your small intestine. This is a thin, flexible tube with a light on it, and it goes in through your mouth or nose.

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

During the procedure, the endoscopist passes a tiny biopsy tool through the endoscope and takes samples from the lining of your small intestine. The samples are then looked at under a microscope for signs of coeliac disease.

If you are under 16 years, the endoscopy would be done under an anaesthetic.

Keep eating foods that contain gluten every day until your coeliac disease has been confirmed. A biopsy will only show coeliac disease if you've been eating gluten regularly. So don't start a gluten-free diet until the diagnosis is confirmed.

If you're already on a gluten-free diet and find it hard to eat gluten again, your doctor should refer you to a specialist.

Read further information:

• Diet advice when being tested for Coeliac Disease
• NICE guidelines: coeliac disease recognition, assessment and management
• Lynsey's diagnosis story

If you've been diagnosed with coeliac disease, your doctor may also arrange other tests to see how the condition has affected you so far.

Your doctor may ask for more blood tests to check the levels of iron and other vitamins and minerals in your blood. These tests help show whether you have anaemia.

In coeliac disease, the body doesn't absorb nutrients well, and this lack of nutrients can make your bones weak and brittle (osteoporosis).

A DEXA scan is a very low dose X-ray that measures bone density. You may need one if your risk score (FRAX/Qfracture) is high. This score will be calculated as part of your assessment.

You can buy home test kits for coeliac disease at pharmacies. But there isn't enough evidence that these tests are reliable.

If you've used one, please talk to your doctor about the result. Even then, a diagnosis can't be confirmed until you've had a blood test and a biopsy.

If you have confirmed coeliac disease, the only treatment is a gluten-free diet, and you need to follow it for life.

If you have coeliac disease, sticking to a gluten-free diet stops gluten from damaging the lining of your intestines (gut). This improves your symptoms, or clears them altogether.

The diet also helps prevent the complications that can develop later in life.

If you have coeliac disease and keep eating foods that contain gluten, your symptoms will come back. Over time, it could also do long-term damage to your health.

If you have coeliac disease and start a gluten-free diet, your symptoms should get better within weeks. The digestive system takes longer to heal fully, though, and that can take up to 2 years.

After a confirmed diagnosis of coeliac disease, you'll be seen by a dietitian who will help you adjust to your new gluten-free diet and lifestyle.

The dietitian will help by:

• making sure your diet is balanced and has all the nutrients you need
• advising you on how to change your diet and lifestyle so they are gluten-free

The dietitian should give you:

• guidance on gluten-free food alternatives
• information on shopping for, preparing, cooking and storing gluten-free foods
• information about gluten-free prescriptions and the gluten-free food service
• details of local and national support groups

More about a dietitian's perspective

Along with a gluten-free diet and lifestyle, your doctor or dietitian may also suggest vitamin and mineral supplements for at least the first 6 months after diagnosis. They help make sure you get all the nutrients you need while your digestive system repairs itself.

Supplements can also correct any deficiencies you have, such as anaemia (a lack of iron in the blood).

If you have coeliac disease, don't give your baby gluten before they are 6 months old. Breast milk is naturally gluten-free, and so are all infant milk formulas.

Once your child is around 6 months old, you can begin to bring in foods that contain gluten, but do it slowly. Keep a careful watch on how your child responds.

If you have coeliac disease, you should get vaccinations for:

• pneumococcus
• flu (annually)

Talk this over with your doctor or specialist before you have any vaccinations.

After you start treatment for coeliac disease, you'll need a health check once a year so your condition can be monitored. Your doctor, a dietitian or a pharmacist can do this.

At the check, they'll ask you:

• about your health in relation to coeliac disease
• how you're managing your gluten-free diet

You'll also get the chance to talk about any worries you have. Living with coeliac disease can be hard at times, but with the right support and information it's completely manageable.

Complications of coeliac disease mostly affect people who keep eating gluten, or people whose condition took a long time to be diagnosed.

The complications that can happen include:

• lactose intolerance
• nutritional deficiencies
• osteoporosis
• cancer

If you have coeliac disease, you may also develop lactose intolerance. This happens because your body lacks the enzyme needed to digest milk sugar (lactose), which is found in dairy products.

The lactose intolerance is only temporary. It normally disappears once you follow a gluten-free diet.

Severe coeliac disease can lead to malnutrition, but this is rare.

Malabsorption is more common. This is when your body fails to absorb nutrients from the food you eat. If you don't take in enough iron, it can lead to anaemia. If you don't take in enough calcium and vitamin D, it can lead to osteoporosis.

Osteoporosis makes the bones brittle and weak, so they fracture more easily. Bones need plenty of different vitamins and minerals to stay dense and strong.

If you have coeliac disease, your risk of osteoporosis is higher. The damaged gut can't absorb the key bone nutrients from food, so the levels of vitamins and minerals in your blood fall. The body tries to make up for this by taking nutrients such as calcium from your bones. That weakens the bones and puts you at greater risk of fracture.

If you have coeliac disease, you should make sure you're eating enough calcium and take vitamin D supplements.

Read further information:

• vitamin D
• osteoporosis

If you have coeliac disease that hasn't been diagnosed or treated, your risk of developing lymphoma and some types of bowel cancer goes up. These cancers are rare, though. Following a gluten-free diet brings the risk down.

Coeliac disease can sometimes lead to less common complications. One is low birth weight in newborn babies. Another, in rare cases, is hyposplenia.