Patient information from BMJ

Coeliac disease

Last published:Sep 27, 2021

If you have coeliac disease, eating foods that contain a type of protein called gluten can damage your gut. Following a gluten-free diet allows the gut to heal. You will need to cut out gluten from your diet for the rest of your life. This can be difficult, so it’s important to get support and expert advice.

What is coeliac disease?

If you have coeliac disease your body reacts to gluten, a protein found in wheat, barley, and rye.

Coeliac disease is not a food allergy or intolerance. It’s an autoimmune disease. This means that your immune system (which normally fights infection in your body) mistakenly sees substances in gluten as a threat and attacks them.

This causes damage to the surface of the gut, so you can't absorb food properly. This causes a range of symptoms and health problems.

The gut is the main part of the body affected, but almost any part of the body can be damaged by coeliac disease.

Coeliac disease can start at any time but most people are diagnosed between the ages of 40 and 50. It can sometimes start in childhood, when foods containing gluten are first added to a child’s diet.

Certain things increase your chances of getting coeliac disease, including having:

• coeliac disease in your family

• type 1 diabetes

• thyroid disease.

Coeliac disease affects about 1 in 100 people. Many people with the condition don’t know that they have it.

What are the symptoms?

Coeliac disease can cause many different symptoms. Some are caused by damage in the gut. Others happen because you are not absorbing enough nutrients. The most common symptoms in adults are:

• diarrhoea

• bloating

• having a lot of wind (flatulence)

• weight loss

• belly pain and discomfort

• feeling very tired all the time. This is because you are not getting enough nutrients.

Not getting enough nutrients can cause complications. You might get anaemia, which means you don't have enough iron in your blood. This happens because you don't absorb enough iron from your food.

If you don't get enough calcium you have a greater chance of getting brittle bones (osteoporosis) and fractures.

Young children might get symptoms of coeliac disease when they first eat gluten. Children might get some or all of these symptoms:

• not gaining weight and not growing normally

• diarrhoea (more common) or constipation (less common)

• poorly formed muscles

• pale skin

• lack of energy

• swelling in the belly.

About 1 in 10 people with coeliac disease get a very itchy rash, usually over their elbows, knees, buttocks, shoulders, and scalp. Doctors call this rash dermatitis herpetiformis.

If your doctor thinks you might have coeliac disease he or she will do a blood test to check for chemicals (called antibodies) that show whether your body reacts against gluten.

If the results are positive, or if your symptoms make it very likely you have coeliac disease, you will need to have a biopsy. To take a biopsy, doctors pass a thin, bendy tube into your mouth and down to your small intestine, where they will take a small sample of tissue from your gut wall.

You should not stop eating food that contains gluten until you have had your tests, otherwise they might give a false result.

What treatments work?

If you have coeliac disease you will need to follow a strict gluten-free diet for the rest of your life. You will be referred to a dietitian for advice and guidance on how to do this. You need to swap foods containing gluten for other foods, to make sure that you get all the nutrients you need.

Following a gluten-free diet means not eating foods that contain:

• wheat (and similar grains including spelt, couscous, semolina, and bulgar wheat)

• barley

• rye.

Many common foods contain gluten, including bread, cakes, biscuits, pizzas, cereals, and beers and ales. Many ready meals, soups, sauces, and sausages also contain wheat flour.

Gluten is also ‘hidden’ where you might not expect it: for example, in some sweets, salad dressings, and cosmetics. You will need to get used to reading the labels of foods to see what contains gluten.

You might have to stop eating oats, at least to start with. After your symptoms have cleared up you will probably be able to eat oats.

There are still plenty of foods you can eat. Your dietitian will give you a list of foods that are naturally free of gluten. These include rice, potatoes, polenta, quinoa, millet, unprocessed meat, eggs, fish, milk cheese, fruit, vegetables, beans, and most yoghurts.

You should also be able to drink wine and most spirits.

Your doctor or dietitian might also recommend you take a daily multi-vitamin and a supplement of calcium and vitamin D.

That’s partly because you might find it hard to get all the nutrients you need on a gluten-free diet, and partly because you might find it harder to absorb nutrients if your gut has been damaged.

You can buy foods that are gluten-free from most supermarkets and health food shops.

It can be hard to stick to a gluten-free diet. You might find that it helps to talk to other people with coeliac disease to get support and swap tips about a gluten-free diet.

What will happen to me?

Following a gluten-free diet will help to clear up your symptoms and heal your gut. But the speed at which this happens varies a lot.

Some people start to feel better within days or weeks. Others find it takes months to feel completely better. It depends in part on how long you have had coeliac disease and how much your gut has been damaged. Healing is often quicker in children.

It’s important to stick to a gluten-free diet. People with coeliac disease who continue to eat gluten are more likely to get health problems, including osteoporosis (brittle bones), a type of intestine cancer, and other autoimmune diseases.

If you find it very hard to stick to a gluten-free diet it’s important to get support. See your doctor or dietitian, or think about joining a group in your area for people with coeliac disease.

Where to get more help?

There are various charities and support groups for people with coeliac disease. For example, Coeliac UK (www.coeliac.org.uk) is a charity for people with coeliac disease and their families in the UK.