Coeliac disease

Expert reviewer Dr Ian Arnott, Consultant Gastroenterologist
Next review due March 2023

Coeliac disease is a condition where your body reacts to part of a protein in gluten called gliadin, which is found in certain foods, such as bread, cereals and pasta. This reaction damages the lining of your small bowel. It can be tricky for doctors to diagnose because the symptoms of coeliac disease vary a lot. You can get it at any age, and many people have it for years without knowing.

In the UK, around one in a 100 people have coeliac disease. If you have coeliac disease you’ll need to follow a life-long gluten-free diet. This stops the symptoms for most people.

Coeliac disease illustration by Bupa UK

About coeliac disease

Coeliac disease isn’t the same as a food allergy or food sensitivity. It’s an autoimmune condition. This means your body’s immune system mistakenly attacks your own healthy tissue. If you have coeliac disease, your immune system mistakes gluten, which is found in foods that contain wheat, barley and rye, for something harmful.

When your immune system attacks gluten, it damages the lining of your small bowel (intestine). The lining of your small bowel is made up of tiny finger-like projections called villi. If you have coeliac disease and eat food that contains gluten, your villi are damaged and flattened. This decreases the surface area of the lining and stops your small bowel fully absorbing the nutrients in your food.

Causes of coeliac disease

Doctors aren’t sure yet exactly what causes coeliac disease. It may run in families – one in 10 people who have coeliac disease have a brother, sister or parent who also has it. If someone in your immediate family has coeliac disease and you have symptoms, you can have a test to find out if you have it too. But having a relative with coeliac disease doesn’t necessarily mean that you’ll get it.

There are other factors that may be involved. These include having previously had an infection in your digestive system, and having another autoimmune disease such as type 1 diabetes.

Symptoms of coeliac disease

The symptoms of coeliac disease can vary widely. Some symptoms may happen because of the damage to your bowel, while others happen because you’re not absorbing nutrients properly. Or you may not have any symptoms – many people don’t. You may only find out you have coeliac disease when your doctor checks you because you have other, related medical conditions.

If you do have coeliac disease symptoms, these may include:

  • diarrhoea (or less commonly, constipation) – you might have this all the time or it may come and go
  • vomiting or feeling sick
  • a bloated tummy (abdomen)
  • excessive wind
  • tummy cramps
  • unexplained weight loss
  • fatigue and feeling tired all the time

If you’re not absorbing your food properly, you may have problems from a lack of certain nutrients, for example, vitamins and minerals. This can lead to you getting symptoms of conditions such as anaemia and osteoporosis.

Young children with coeliac disease may find it difficult to gain weight and they may grow more slowly than other children. They may also appear more irritable than usual.

If you have these symptoms, it doesn’t mean that you definitely have coeliac disease; if you or your child have any of them, contact your GP.

The symptoms of coeliac are very similar to irritable bowel disease (IBS) so it can be difficult to identify which you have. You might be diagnosed with IBS before the diagnosis of coeliac is made. Therefore, if you have IBS, your GP may test you for coeliac disease.

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Diagnosis of coeliac disease

Your GP will ask about your symptoms and examine you. They may also ask about your family’s medical history. If they think there’s a chance you may have coeliac disease, your GP will offer you a blood test. This will look for certain antibodies that are present in people with coeliac disease.

If the tests show that you have the antibodies, your GP will refer you to a gastroenterologist. This is a doctor who specialises in identifying and treating conditions that affect the digestive system. They’ll suggest that you have a further test called an intestinal biopsy.

In an intestinal biopsy, a doctor will pass a narrow, flexible, tube-like telescopic camera called an endoscope through your mouth down to your small bowel. They’ll then take a small sample (biopsy) of the lining of your bowel. The sample will be sent to a laboratory to look for damage to your bowel. Your doctor will explain the procedure to you, and discuss ways to make it as comfortable as possible. You can also find out more about this type of procedure from our topic on gastroscopy.

It’s important that you don’t stop eating gluten before you’ve been diagnosed with coeliac disease. If you’ve already changed to a gluten-free diet, then your tests may appear normal even if you have coeliac disease. Aim to eat some gluten in more than one meal every day for at least six weeks before you are tested.

Personal story - living with coeliac disease

Graham tells us about being diagnosed with coeliac disease

Treatment of coeliac disease

The only coeliac disease treatment is to follow a life-long, strict, gluten-free diet. You may find your symptoms improve within a week or two once you’ve cut out gluten completely.

Your doctor will refer you to a specialist dietitian who will offer you lots of support and practical help to help you manage your condition. They may suggest you contact the charity Coeliac UK, which can give you lots of practical advice.

Gluten is found in foods made using wheat, barley or rye. It’s in bread, pastry, cakes, pasta, pizza bases and biscuits. There’s also gluten in foods you may not expect, such as most breakfast cereals and processed foods – including sausages, soups and sauces. Most beers have gluten in them too. Oats may be contaminated with gluten so you may need to take care – see below for more information in the FAQ: Can I eat oats if I have coeliac disease?

You’ll need to start checking the labels on foods – it should say if the product contains gluten, as well as giving a list of ingredients. See our FAQ on food labelling below for more information. After a while, you get more familiar with what you can and can’t eat. You can find gluten-free bread, biscuits and pasta in most supermarkets or health food shops.

If you’re eating out and the menu doesn’t say whether the foods contain gluten, just ask. If in doubt, it’s safer not to eat something you’re unsure about.

Understandably, many people find it hard to stick to a strict gluten-free diet. But it really is important for your health – even small amounts of gluten can damage your bowel. If you do stick to a gluten-free diet long term, the outcome will be excellent and your risk of complications will be very low.

If you have coeliac disease, your dietitian may advise you to take some vitamin and mineral supplements (such as calcium and vitamin D).

Complications of coeliac disease

Coeliac disease may lead to a range of potential health problems (which may be more common if you don’t stick to a gluten-free diet) including:

  • a deficiency in iron (anaemia) and other vitamins or minerals
  • an increased risk of developing osteoporosis, where your bones become weakened and are more likely to break
  • reduced growth, and delayed puberty in children
  • reduced fertility in both men and women
  • a skin problem called dermatitis herpetiformis, where itchy blisters form on your skin
  • a small, increased risk of developing certain cancers of the digestive tract and some kinds of lymphoma
  • lactose intolerance – where your digestive system can’t break down lactose (a sugar in milk) – but this usually gets better after you follow a gluten-free diet

If you stick to a gluten-free diet, it will reduce your risk of developing these complications.

Living with coeliac disease

Gluten-free diet

If you have coeliac disease, you need to follow a strict gluten-free diet to stay healthy. This may seem daunting at first, but as you get more experienced and learn what you can eat, it will get easier. A dietitian can help you plan your gluten-free diet.

The good news is that you’ll be able to eat many naturally gluten-free foods, such as:

  • meat
  • fish
  • fruits and vegetables
  • rice
  • potatoes
  • lentils

If you have coeliac disease, you need to follow a strict gluten-free diet to stay healthy. This may seem daunting at first, but as you get more experienced and learn what you can eat, it will get easier. A dietitian can help you plan your gluten-free diet.

Your dietitian or specialist nurse will give you lots more information about what foods and drinks you can have and which you should avoid. There’s also lots of information available online from organisations such as those in our section ‘Other helpful websites’ below.

Regular health checks

Coeliac disease is a lifelong condition so you may need to have regular check-ups (once a year) with your pharmacist, specialist nurse, dietitian or doctor. If you do have check-ups, they’ll ask you about any symptoms you have and how you’re getting on with your gluten-free diet. Children and teenagers may have their height measured to make sure they’re growing properly. You may need blood tests to check your health and to see if your body is absorbing enough nutrients.

Because of the risk of getting osteoporosis, from time to time your GP may recommend that you have a dual X-ray absorptiometry (DXA) scan. This checks the density of your bones. See our topic on osteoporosis for more information.

Having coeliac disease can mean you’re less able to fight infections. Your GP will suggest you have the annual flu vaccine and the pneumococcal vaccine that protects against some types of pneumonia. If they recommend you have other vaccinations, they’ll explain why.

Frequently asked questions

  • It can be difficult to follow a gluten-free diet and mistakes can happen, especially when you’re just starting. If you eat gluten, the reaction you have will depend on a number of things. These include how severe your symptoms have been in the past and how much gluten you’ve eaten.

    You may get some symptoms a few hours after you eat, and these could last for a few hours to several days. But everyone with coeliac disease will react differently and you may find you don’t have any symptoms at all. If you make the occasional mistake, it’s unlikely to cause lasting damage to your bowel. But it’s important to always check what you’re eating and always follow a gluten-free coeliac diet.

  • If you have coeliac disease, it’s important to check the labels on foods so that you can avoid sources of gluten. Foods labelled ‘gluten-free’, ‘very low gluten’ or have the Crossed Grain Symbol are generally safe for most people with coeliac disease to eat.

    If food contains grains with gluten, they should be shown in bold letters in the list of ingredients – for example wheat, barley or rye. If you’re in a restaurant, you may have to ask the staff about the ingredients of their food.

    Look out for foods labelled gluten-free or very low gluten. Foods labelled gluten-free may contain traces of gluten – this is defined as less than 20 parts per million of gluten. Foods labelled ‘very low gluten’ are made with a special type of modified starch. They contain a little more gluten than gluten-free products (up to 100 parts per million).

    Some foods may be labelled with the Crossed Grain Symbol, which is licensed by the charity Coeliac UK. These foods are gluten-free. Supermarkets may also have their own symbols to show that food is gluten-free.

    Foods labelled ‘wheat-free’ aren’t the same as ‘gluten-free’ or ‘very low gluten’. Wheat-free foods may have other cereals, such as barley or rye in them. These contain gluten, so they aren’t suitable if you have coeliac disease.

    If you’re in doubt as to whether something is safe or not, it’s best not to eat it. Ask your dietitian for further advice and information. You can learn more about food labels and the UK law in the topic: food labelling.

  • Coeliac disease is linked to wheat because wheat contains gluten and it’s gluten that causes the symptoms of coeliac disease. But coeliac disease isn’t the same as wheat allergy or wheat intolerance.

    If you have coeliac disease, your body’s immune system mistakes gluten for a harmful substance. In attacking gluten, it damages the lining of your small bowel.

    A true wheat allergy is rare, and it affects children more than adults. Like coeliac disease, it involves your immune system reacting, but in a different way. It tends to happen very soon after you eat wheat (within seconds or minutes). It’s not the same as coeliac disease but it can cause similar symptoms, such as tummy pain, vomiting and diarrhoea. Other wheat allergy-related symptoms might include a blocked or runny nose, feeling short of breath, itchy and watering eyes, hives (itchy rash) and swelling. You’ll usually only have symptoms for a short time after eating wheat (a few hours), though occasionally they can last for longer.

    A food intolerance is when you get unpleasant symptoms after eating certain foods, but these don’t involve your immune system. If you have wheat intolerance, you may find that you get symptoms such as bloating, wind and tummy cramps after eating wheat. Although these symptoms are similar to those you may get with coeliac disease, they are not caused in the same way. They may be caused by bacteria in your bowel reacting to what you eat.

    Wheat allergy and wheat intolerance don’t damage the lining of your small bowel in the way coeliac disease does.

    If you find you get unpleasant reactions after eating wheat, contact your GP.

  • Oats contain avenin, a protein similar to gluten. Most people with coeliac disease can safely eat avenin. But problems can occur if oats are produced in the same place as wheat, barley and rye, as the oats can be contaminated. Oats that have been tested to make sure that they’re not contaminated may be labelled ‘gluten-free’.

    A very few people with coeliac disease may still be sensitive to gluten-free, uncontaminated oats. If you’re unsure about eating oats, ask your dietitian for advice.

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  • Reviewed by Rachael Mayfield-Blake, Freelance Health Editor, March 2020
    Expert reviewer Dr Ian Arnott, Consultant Gastroenterologist
    Next review due March 2023