Coeliac disease

Coeliac disease | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Stomach, liver and gastrointestinal tract Coeliac disease Coeliac disease Coeliac disease About coeliac disease Symptoms of coeliac disease Causes of coeliac disease Diagnosing coeliac disease Treating coeliac disease Complications of coeliac disease About coeliac disease Coeliac disease is a common autoimmune condition where the immune system in a persons intestine (gut) reacts when they eat gluten. This causes chronic inflammation. What is gluten? Gluten is a protein found in wheat, barley and rye. Gluten is found in food and drink that contains wheat, barley and rye, 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 How many people have coeliac disease? Coeliac disease affects 1 person in every 100. Only about one third of them are ever diagnosed. Coeliac disease can be diagnosed at any age. Reported cases of coeliac disease are twice as high in women than men. Symptoms Coeliac disease can cause a wide range of symptoms in the digestive system and rest of the body. Symptoms can develop at any age, but coeliac disease is most commonly diagnosed between the ages of 40 and 60 years. More about the symptoms of coeliac disease or what is coeliac disease? Causes Coeliac disease is more common in people with certain conditions and in relatives of people with coeliac disease. Its unknown exactly why people develop the condition. More about the causes of coeliac disease Diagnosis Most people with coeliac disease have antibodies in their blood. The first stage in diagnosis is a simple blood test. The second stage might result in a biopsy, if necessary. More about how coeliac disease is diagnosed Treatment Coeliac disease can be effectively treated with a gluten-free diet. By adopting a gluten-free diet and lifestyle, you can manage your condition and improve your quality of life. More about how coeliac disease is treated Complications If coeliac disease isnt treated, youre at greater risk of conditions like osteoporosis and cancer in later life. More about the complications of coeliac disease Living well with coeliac disease Living with coeliac disease can be challenging but with the right support and information, its completely manageable. Symptoms of coeliac disease Symptoms of coeliac disease vary from person to person and can range from mild to severe. Some people may have no symptoms at all. Sometimes the symptoms of coeliac disease are mistaken for: irritable bowel syndrome (IBS) wheat intolerance stress just getting older Common symptoms Some common symptoms of coeliac disease include: 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 youve any of these symptoms, speak to your GP. You must continue eating gluten as part of your diet until youve been diagnosed. You can also take Coeliac UKs online assessment . Symptoms in children Children with coeliac disease might also not grow at the expected rate, or be late to reach puberty. Causes of coeliac disease Its not known exactly why people develop coeliac disease or why some have mild symptoms while others have severe symptoms. It could be that a persons genetics and the environment play a part in why this condition develops. Pre-exisiting conditions Coeliac disease is more common in people with certain conditions  such as type 1 diabetes, Downs syndrome or autoimmune thyroid disease. Also, in close family members (parents or siblings) of people with coeliac disease. Genetics Coeliac disease often runs in families. If youve a close relative with the condition  such as a parent or sibling  your chance of developing it is higher. This risk is approximately 10% for those with a family history, compared with 1% for someone without a close relative with the condition. If you have a close relative with coeliac disease and you have symptoms you should speak to your GP. If youve an identical twin with coeliac disease, theres an 85% chance youll also develop the condition. Diagnosing coeliac disease Coeliac disease can be diagnosed at any age, and both children and adults can show symptoms Delayed diagnosis is common. It can take an average of 13 years to diagnose. Blood tests Most people with coeliac disease have antibodies that show up in their blood. The first stage in diagnosis can be a blood test. Wholl have a blood test A blood test should be offered if youve 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 youve 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, Downs syndrome, Turner syndrome or persistent constipation Blood tests for coeliac disease are not recommended for infants whove not started to eat foods containing gluten. Before a blood test Before a blood test is taken, its important that you eat gluten-containing foods in more than one meal every day for at least 6 weeks before the test. Remember to eat a normal gluten diet for 6 weeks before any tests. This means eating more than one meal a day that includes gluten-based foods. Whats involved in a blood test? A blood test for coeliac disease involves taking a blood sample and testing it for antibodies in the blood. You must have been eating gluten-containing food in more than 1 meal for at least 6 weeks before the test, for it to be successful. Blood tests are 95% accurate at diagnosing coeliac disease. Positive result If the coeliac antibodies are found in your blood, further investigation will be needed. Thisll be discussed with you. Your GP will refer you to your local coeliac service for confirmation of the diagnosis. You should remain on a normal diet until all investigations are complete. Negative result Its sometimes possible to have coeliac disease and not have antibodies in your blood. If you continue to have coeliac disease-like symptoms your GP may still refer you for a biopsy of your gut. Biopsy A biopsy can help confirm a diagnosis of coeliac disease. If youre referred for a biopsy, this will be carried out in hospital. Usually, a biopsy will be done by a gastroenterologist. This is a doctor who specialises in treating conditions of the stomach and intestines. Whats involved in a biopsy? If you need to have a biopsy, a thin flexible tube with a light called an endoscope will be inserted into your mouth or nose and passed down to your small intestine. Before the procedure, a local anaesthetic is given to numb the throat and/or a sedative to help you relax. During the procedure, the endoscopist 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. For those under 16 years the endoscopy would be under an anaesthetic. Diet before and after testing You should continue to eat gluten-containing foods every day until a diagnosis has been confirmed. A biopsy will only show coeliac disease if the person being tested has been eating gluten-containing foods regularly. Only after coeliac disease is confirmed can you start a gluten-free diet. If youre already on a gluten-free diet and find it hard to eat gluten again, your GP should refer you to a specialist. You may not be able to get gluten-free foods on prescription if you do not have coeliac disease confirmed by a biopsy. Read further information: Diet advice when being tested for Coeliac Disease NICE guidelines  coeliac disease recognition, assessment and management BSG guidelines on the diagnosis and management of adult coeliac disease Lynseys diagnosis story Tests after diagnosis If youve been diagnosed with coeliac disease, you may also have other tests to assess how the condition has affected you so far. Additional blood tests You may have further blood tests to check levels of iron and other vitamins and minerals in your blood. Thisll help check for anaemia . Dual energy X-ray (DEXA) scan (adults only) In coeliac disease, a lack of nutrients caused by poor absorption can make bones weak and brittle (osteoporosis). A DEXA scan is a type of very low dose X-ray that measures bone density. This may be required if your risk score (FRAX/Qfracture) is high. This will be calculated as part of your assessment. Over-the-counter tests You can buy over-the-counter tests for coeliac disease at pharmacies. There isnt enough evidence that these tests are reliable. If youve used one, its important that you talk to your GP about the result. Before a diagnosis can be confirmed, youll still need to have a blood test and biopsy. Treating coeliac disease The only treatment for confirmed coeliac disease is a lifelong gluten-free diet. How does a gluten-free diet help? Following a gluten-free diet helps prevent gluten damaging the lining of the intestines (gut). This will improve or remove the symptoms. A gluten-free diet will also help to prevent the complications later in life. What if I continue to eat gluten? If youre diagnosed with coeliac disease and continue to eat foods that contain gluten, your symptoms will return and could cause long-term damage to your health. Gluten-free food on prescription If youve a confirmed diagnosis of coeliac disease or dermatitis herpetiformis, you can access gluten-free foods on prescription through your GP or Scottish Gluten-free Food Service. How to register with the Scottish Gluten-free Food Service\u200b How long does treatment take to work? Symptoms should improve within weeks of starting a gluten-free diet. However, it may take up to 2 years for the digestive system to heal completely. Dietary advice After a confirmed diagnosis of coeliac disease, youll be seen by a dietitianfor help with adjusting to your new gluten-free diet and lifestyle. The dietitian will help by: making sure the diet is balanced and contains all the nutrients you need advising how to adjust your diet and lifestyle to ensure its gluten-free The dietitian should provide you with: guidance on gluten-free food alternatives information on shopping, preparing, cooking and storing gluten-free foods information about gluten-free prescriptions and the Scottish Gluten-free Food Service details of local and national support groups More about a dietitians perspective Dietary supplements As well as adopting a gluten-free diet and lifestyle, your GP or dietitian might also recommend that you take vitamin and mineral supplements for at least the first 6 months after diagnosis. This will ensure that the 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). Feeding your baby If youve coeliac disease, you shouldnt introduce gluten into your babys diet before its 6 months old. Breast milk is naturally gluten-free and all infant milk formulas are too. Foods with gluten should be introduced slowly when a child is around 6 months old. The situation should be carefully monitored. Vaccinations If you have coeliac disease, you should get vaccinations for: pneumococcus flu (annually) You should discuss this with your GP or specialist before having any vaccinations. Annual health checks After starting treatment, youll need to have an annual coeliac disease health check to monitor your condition. This will be done by your GP, a dietitian or a pharmacist. At this health check, theyll ask you: about your health in relation to coeliac disease how youre managing your gluten-free diet Youll also be given the chance to discuss any concerns. Living with coeliac disease can be challenging but with the right support and information, its completely manageable. More about living well with coeliac disease Complications of coeliac disease Complications of coeliac disease only tend to affect people that continue to eat gluten, or in people that have taken a long time to diagnose. Possible complications of coeliac disease include: lactose intolerance nutritional deficiencies osteoporosis cancer Lactose intolerance If youve coeliac disease, you may also develop lactose intolerance because the body lacks the enzyme to digest milk sugar (lactose) found in dairy products. Lactose intolerance is only temporary. It normally disappears when you follow a gluten-free diet. More about lactose intolerance Nutritional deficiencies Severe symptoms of coeliac disease can lead to malnutrition. However, this is rare. More common is malabsorption where your body fails to absorb nutrients from the foods you eat. This can lead to anaemia if the body doesnt take in enough iron, and osteoporosis if theres not enough calcium and vitamin D being taken in. More about nutritional deficiencies Osteoporosis Osteoporosis causes the bones to become brittle, weak and fracture more easily. Bones need a wide variety of vitamins and minerals to stay dense and strong. If youve coeliac disease, youve an increased risk of developing osteoporosis due to the damaged gut failing to absorb key bone nutrients from food. This decreases blood vitamin and mineral levels and the body compensates for this by taking nutrients like calcium from the bones. This weakens your bones and puts you at increased risk of fracture. If you have coeliac disease, you should make sure youre eating enough calcium and take vitamin D supplements. Read further information: NHS inform: Vitamin D NHS inform: osteoporosis Cancer Having undiagnosed or untreated coeliac disease can increase your risk of developing lymphoma and some types of bowel cancer but these are rare. Risks are reduced by following a gluten-free diet. Less common complications Less common complications of coeliac disease include low birth weight in newborn babies and in rare cases, hyposplenia. Source: Scottish Government - Opens in new browser window Last updated: 12 December 2023 How can we improve this page? Help us improve NHS inform Thank You Your feedback has been received Dont include personal information e.g. name, location or any personal health conditions. 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