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Coeliac disease

If you have coeliac disease, your body reacts to a protein called gluten. It’s found in certain foods, such as bread, cereals and pasta. This causes damage to the lining of your small bowel (also known as your small intestine).

In the UK, around one in 100 people have coeliac disease. Many people have it for years without it being diagnosed. Coeliac disease affects twice as many women as men and you can get it at any age.

Coeliac disease affects your small bowel. The lining of your small bowel is made up of tiny finger-like projections called villi. These villi increase the surface area of the lining of your bowel so it can fully absorb nutrients from food. Because your body reacts to gluten, if you have coeliac disease and eat food that contains it, your villi become damaged and flattened. This decreases the surface area of your gut lining and stops your small bowel fully absorbing the nutrients in the food. Gluten is harmless to people who don’t have coeliac disease.

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  • Symptoms Symptoms of coeliac disease

    Symptoms of coeliac disease can vary from being mild to severe – or you may not have any at all. The symptoms may be similar to those of other conditions, such as irritable bowel syndrome (IBS) and Crohn’s disease. If you have coeliac disease, you may have symptoms including:

    • diarrhoea or constipation
    • vomiting or feeling sick
    • a bloated abdomen (tummy)
    • excessive wind
    • pain or cramps in your abdomen
    • sudden or unexplained weight loss (although you can also be overweight and have coeliac disease)

    You may also have symptoms unrelated to your digestive system, such as:

    • hair loss (alopecia)
    • mouth ulcers
    • a rash on your skin
    • fatigue and feeling tired all the time
    • headaches

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

    If you or your children have any of these symptoms, contact your GP.

  • Diagnosis Diagnosis of coeliac disease

    Your GP will ask about your symptoms and your medical history. He or she may also ask about your family’s medical history. They may then examine you. Your GP will arrange for you to have a blood test to look for certain antibodies that are present in people with coeliac disease. Usually your body’s immune system produces antibodies to fight against things that could harm you, such as bacteria and viruses.

    If you have coeliac disease, your body mistakes gluten for a damaging substance and produces antibodies to attack it. This reaction to gluten damages the wall of your bowel. It’s important that you don’t stop eating gluten before you've been diagnosed with coeliac disease. This is because you may need a test to look at your villi (tiny finger-like projections found in your small bowel). If you've changed to a gluten-free diet, these will start to recover and so you may not get a reliable result or diagnosis.

    If the tests show 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 will suggest you have an intestinal biopsy.

    When you have an intestinal biopsy, your doctor will pass a narrow, flexible, tube-like telescopic camera called an endoscope down your oesophagus. They may take a small sample of the lining of your bowel. You’ll be offered a sedative medicine to help you relax. The sample will be sent to a laboratory to look for damage to your bowel.

  • Treatment Treatment of coeliac disease

    There’s no cure for coeliac disease, but it can be managed by following a strict, gluten-free diet. You may find your symptoms improve within a few weeks once you've cut out gluten completely.

    Your doctor will refer you to a specialist dietitian. Your dietitian can offer you lots of support and practical help to help you manage your condition.

    Gluten is found in foods that are 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 to contain it, such as most breakfast cereals and processed foods – including sausages, soups and sauces.

    Check the labels on foods – it should say if the product contains gluten, as well as giving a list of ingredients. After a while, you’ll probably get familiar with what you can and can’t eat. But there are lots of gluten-free alternatives. You can find gluten-free bread, biscuits and pasta in most supermarkets or health food shops. Some gluten-free foods are available on prescription. If you’re eating in a restaurant 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.

    Your dietitian will explain how important it is to have a gluten-free diet. This is because even small amounts of gluten, such as a few crumbs, can affect people with coeliac disease. Try not to share toasters, bread boards, or condiments, such as jam, with anyone else. You may find this difficult to explain to friends and family, but if you need any advice, speak to your dietitian.

    Your dietitian may advise you to take some vitamin and mineral supplements (such as iron and calcium) until you have settled into your new diet. For examples of what you can eat when following a gluten-free diet, have a look at the ‘Living with coeliac disease’ section.

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  • Causes Causes of coeliac disease

    Coeliac disease is caused by your body reacting to gluten. This is found in foods that contain wheat, barley and rye, such as bread and pasta.

    Coeliac disease is an autoimmune condition. Usually, your immune system only attacks harmful substances – it does this by producing antibodies. Gluten isn't a harmful substance but if you have coeliac disease, your body mistakes it for one and produces antibodies to fight it. This reaction causes damage to the lining of your small bowel.

    The exact reasons why you may develop coeliac disease aren't fully understood at the moment. 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 be tested to find out if you have it too. But having a relative with coeliac disease doesn't necessarily mean that you will get it.

    There are other factors that are thought to be involved. These include having previously had an infection in your digestive system, such as a rotavirus infection. You may also have another health condition such as Crohn’s disease or type 1 diabetes.

    It may also be that your diet as a baby can make you more likely to get coeliac disease. If parents introduce gluten into their baby’s diet before they are three months old, it can increase their risk of developing coeliac disease. The UK Government recommends that parents only introduce solid foods after their baby is six months old.

  • Complications Complications of coeliac disease

    If you don’t have treatment for coeliac disease, it may lead to:

    • a deficiency in iron (anaemia) and other vitamins or minerals
    • reduced growth in children
    • reduced fertility in both men and women
    • an increased risk of developing osteoporosis or osteopenia – conditions in which your bones become weakened and are more likely to break
    • an increased risk of developing epilepsy
    • a small, increased risk of developing certain cancers, such as small bowel cancer and oesophageal cancer

    Your GP may recommend that you have a dual X-ray absorptiometry (DXA) scan, which checks the density of your bones. The scan looks for signs of fragile bones and will help to measure your risk of breaking (fracturing) a bone. You may need to have another scan if you do ever have a fracture. Your scan will be repeated later in life – for women when they reach the menopause, and at age 55 for men.

    People who have coeliac disease are more at risk of developing an associated condition – for example, Sjogren’s syndrome, type 1 diabetes, or Addison’s disease. If you stick to a gluten-free diet, it will reduce your risk of developing these complications. Having coeliac disease doesn't affect how long you live.
  • Living with coeliac disease Living with coeliac disease

    Coeliac disease is a life-long condition, so you’ll need to have regular check-ups (once a year) with your specialist nurse, dietitian or doctor. You will need blood tests to see if your body is absorbing enough nutrients. 

    If you've recently been diagnosed with coeliac disease, making gluten-free dietary changes may seem daunting. But there are lots of gluten-free alternatives such as bread, cereals, pasta, flour, crackers and cereal bars. You can also eat naturally gluten-free foods such as meat, fruits and vegetables. There are also plenty of other savoury and sweet gluten-free options to choose from.

    You may be referred to a dietitian who can help you plan your gluten-free diet. Because people with coeliac disease may be at increased risk of osteoporosis, you’ll probably be advised to do regular physical activity. You may also need to take a calcium supplement. Both of these things can help to strengthen your bones. Depending on how much alcohol you drink, it may be an idea to cut down.

    Coeliac disease can sometimes mean you’re less able to fight infections. Your GP may suggest you have vaccinations against influenza, pneumococcus and haemophilus influenza type B. Charities and patient groups that focus on coeliac disease can be an invaluable source of support and advice to help you manage your condition.

  • FAQs FAQs

    What if I eat something that contains gluten without realising?

    Answer

    Whether or not you react to gluten will depend on a number of things, such as how much of the food you ate. Even if you don’t have any symptoms straight away, your body may still be affected. This could cause damage to the lining of your small bowel.

    Explanation

    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. Everyone with coeliac disease will react differently and you may find you don’t have any symptoms at all. However, your body may still be affected and this could cause damage to the lining of your small bowel. It’s important to always check what you’re eating and always follow a gluten-free diet.

    Can I eat foods labelled 'gluten free', 'very low gluten' and 'wheat free'?

    Answer

    Foods labelled ‘gluten-free’ are generally safe for most people with coeliac disease to eat. Foods labelled ‘very low gluten’ may not be safe for everyone and ‘wheat-free’ doesn't necessarily mean gluten-free.

    Explanation

    In January 2012, the rules changed about how all food is labelled. This includes all food, no matter where it’s sold, be it in any type of shop or supermarket, or in a restaurant or cafe.

    Most people with coeliac disease can eat foods labelled gluten-free. These 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 people with coeliac disease may have a reaction to ‘very low gluten’ foods. Talk to your dietitian if you’re thinking of trying any of these.

    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.

    What’s the difference between coeliac disease and a wheat allergy?

    Answer

    Coeliac disease is linked to wheat because wheat contains gluten and it’s gluten that causes the symptoms of coeliac disease. Coeliac disease isn't the same as a wheat allergy – they are two distinct conditions.

    Explanation

    If you have coeliac disease, your body’s immune system mistakes gluten for a harmful substance and produces antibodies to fight it. This immune response can damage the lining of your small bowel.

    True wheat allergy is thought to be very rare. Like coeliac disease, it involves your immune system reacting but in a different way. This tends to happen very soon after you eat wheat. This can cause similar symptoms to those of coeliac disease, such as abdominal (tummy) pain and a change in bowel movements.

    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 generally only have symptoms for a short time after eating wheat (a few hours), though occasionally they can last for longer. You may have a mild or a severe reaction but it won’t cause inflammation (swelling) to your small bowel in the way coeliac disease does.

    If you think you may have symptoms of a wheat allergy or coeliac disease, contact your GP.

  • Resources Resources

    Further information

    Sources

    • Coeliac disease. NICE Clinical Knowledge Summaries. cks.nice.org.uk, published May 2010
    • Understanding celiac disease. American Gastroenterological Association. www.gastro.org, accessed November 2014
    • Coeliac disease. British Society of Gastroenterology. www.bsg.org.uk, accessed November 2014
    • Coeliac disease. PatientPlus. www.patient.co.uk/patientplus.asp, published June 2012
    • Celiac disease. The Merck Manuals. www.merckmanuals.com, published May 2014 
    • Map of Medicine. Coeliac disease. International View. London: Map of Medicine; 2014 (Issue 1)
    • Coeliac disease: recognition and assessment of coeliac disease. National Institute for Health and Care Excellence (NICE), 2009. www.nice.org.uk
    • Coeliac disease. BMJ Best Practice. www.bestpractice.bmj.com, published April 2014
    • Dimitrova AK, Ungaro RC, Lebwohl B, et al. Prevalence of migraine in patients with celiac disease and inflammatory bowel disease. Headache 2013; 53:344–55. doi: 10.1111/j.1526-4610.2012.02260.x
    • Coeliac disease – tests. Lab Tests Online UK. www.labtestsonline.org.uk, published March 2014
    • Celiac sprue. Medscape. www.emedicine.medscape.com, published October 2014
    • Coeliac disease. BMJ Best Practice. www.bestpractice.bmj.com, published April 2014
    • Dolcino M, Zanoni G, Bason C, et al. A subset of anti-rotavirus antibodies directed against the viral protein VP7 predicts the onset of celiac disease and induces typical features of the disease in the intestinal epithelial cell line T84. Immunol Res 2013; 56(2–3):465−76. doi: 10.1007/s12026-013-8420-0
    • Introduction of gluten into an infant’s diet. Food Standards Agency. www.food.gov.uk, accessed November 2014
    • British Society of Gastroenterology guidance on coeliac disease. British Society of Gastroenterology, 2010. www.bsg.org.uk
    • The management of adults with coeliac disease in primary care. Primary Care Society for Gastroenterology, 2006. www.mims.co.uk
    • Guidelines for osteoporosis in inflammatory bowel disease and coeliac disease. British Society of Gastroenterology, 2007. www.bsg.org.uk
    • Gluten advice for consumers. Food Standards Agency. www.food.gov.uk, published January 2012
    • Gluten-free foods: frequently asked questions. British Specialist Nutrition Association. www.bsna.co.uk, accessed November 2014
    • Allergy to wheat and other grains. Allergy UK. www.allergyuk.org, published March 2012
    • Fertility problems. Coeliac UK. www.coeliac.org.uk, accessed November 2014
    • The gluten-free diet. Gluten-free guarantee. Coeliac UK. www.coeliac.org.uk, accessed December 2014
    • Food allergy information. Institute of Food Research. www.foodallergens.info, accessed December 2014
    • Trowers E, Tischler M. Gastrointestinal physiology: a clinical approach. London: Springer; 2014:9
    • Gastroenterology. Oxford handbook of clinical medicine (online). Oxford Medicine Online. www.oxfordmedicine.com, published January 2014
    • Labelling of ‘gluten free’ foods. Food Standards Agency. www.food.gov.uk, accessed April 2015
    • Myths about coeliac disease. Coeliac UK. www.coeliac.org.uk, accessed 14 April 2015
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