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How many people in the UK have coeliac disease?
Screening studies suggest that 1 in 100 people have coeliac disease; however, there is evidence to suggest that only 1 in 8 cases have been diagnosed. Therefore under-diagnosis of coeliac disease is a significant problem.
What exactly is coeliac disease?
Coeliac disease is a life-long autoimmune disease, which is triggered by eating gluten, a type of protein found in wheat, rye and barley. Some people are also sensitive to oats. For people with coeliac disease, eating gluten damages the lining of the gut, which prevents normal digestion and absorption of food. There are serious health problems associated with coeliac disease including osteoporosis, bowel cancer and increased risk of other autoimmune diseases.
Is it a genetic condition?
Coeliac disease is not contagious. Coeliac disease does run in families, but not in a predictable way. Studies show that if a family member has the condition, there is a 1 in 10 chance of a close relative developing the disease. Anyone who has a relative with coeliac disease should be aware of the symptoms, and should discuss with their doctor about getting tested if they think they may have it. People with coeliac disease are born with genes that predispose them to develop the condition, but the symptoms can be triggered at any age. A stressful event such as pregnancy, childbirth or a bout of gastroenteritis can trigger coeliac disease in predisposed people. The majority of people are diagnosed between 40 – 50 years of age.
What are the symptoms, what should we be looking out for?
The symptoms of coeliac disease range from mild to severe, can vary between individuals and can present at any stage in life. Not everyone with coeliac disease experiences gut related symptoms. Symptoms can include bloating, abdominal pain, nausea, constipation, chronic or intermittent diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, unexplained weight loss (but not in all cases), failure to thrive/faltering growth (in children), skin problems, depression, joint or bone pain and neurological (nerve related) problems. Dermatitis Herpetiformis (DH) is a characteristic skin condition which is a presentation of coeliac disease. People with DH react to gluten by developing itchy, red raised patches, often with blisters that burst with scratching. Elbows, knees and buttocks are most commonly affected, but any area of skin can be affected. Even though they may not have gut related symptoms, most people with DH have the same kind of gut damage as seen in typical coeliac disease.
What should people do if they suspect they might have coeliac disease?
The first step is for them to discuss their symptoms with their GP who can take a simple blood test to check for antibodies. Antibodies are produced by the body in response to eating gluten. It is therefore essential to continue to eat a normal gluten containing diet prior to getting tested. NICE recommend having gluten in at least one meal everyday for at least six weeks prior to the test. The next step is for the GP to refer to a hospital specialist (gastroenterologist) for a gut biopsy. This is a simple procedure performed in out-patients which looks for damage in the gut that is typical in coeliac disease. The test involves passing a thin flexible tube (an endoscope) through the mouth and down to the upper part of the small intestine where a tiny sample of gut lining is collected. This can be done using local anaesthetic on the throat and/or sedation. Although the procedure may not be particularly comfortable, neither passing the tube nor taking biopsies should be painful.
GLUTEN SHOULD NEVER BE TAKEN OUT OF THE DIET UNTIL THE BLOOD TEST AND GUT BIOPSY ARE COMPLETE BECAUSE THIS IS LIKELY TO CAUSE A FALSE NEGATIVE TEST.
How is coeliac disease treated?
A life-long gluten-free diet is the treatment for coeliac disease. When you are diagnosed, your doctor should refer you to a dietitian who will help guide you through the initial steps of changing your diet. It may take a while to get your diet sorted out but with perseverance you will get there. By switching to a gluten-free diet, the gut damage caused by eating gluten will start to heal. The amount of time the gut takes to heal varies between people; and commonly takes between 6 months and up to 2 years. However, you should start to feel better in the first few weeks. The health risks associated with coeliac disease are minimised as long as you stick to a gluten-free diet.
What is the difference between an allergy and intolerance?
It is important to distinguish between food allergy and food intolerance as these two terms can sometimes be confused. Food allergies are generated by the immune system and usually occur within seconds or minutes of eating the food in question. Tiny amounts can cause potentially life-threatening allergic reactions, which is why it is vital to know about the ingredients and preparation of foodstuffs. Food intolerance is not triggered by the immune system and is generally non life-threatening. It may affect the digestion and common symptoms include digestive discomfort, diarrhoea and bloating. Coeliac disease is not an allergy or simple food intolerance. It is an autoimmune disease which is triggered by eating gluten from the cereals wheat, rye and barley. Some people with coeliac disease are also sensitive to oats. Coeliac disease requires on-going review and management. There are serious problems associated with coeliac disease including osteoporosis, bowel cancer and increased risk of other autoimmune diseases.
What kinds of foods have gluten in them?
Many everyday foods such as breads, pasta, flours and cereals contain gluten. However, there are plenty of foods you can continue to eat when you have coeliac disease. Plain meat, fish, eggs, cheese, milk, yoghurts, fruits, vegetables, pulses (peas, beans and lentils), rice, maize (corn) and potatoes are gluten-free. Coeliac UK produces an annual Food and Drink Directory which lists thousands of foods from tins of soup to ready meals that can be safely eaten. By using your Food and Drink Directory, you should be able to build up a knowledge of which foods contain gluten, and those which are safe to eat. Suitable ‘free-from’ products are also available from supermarkets, the internet and mail order companies.
Can anyone get hold of the Food and Drink Directory?
If you are diagnosed with coeliac disease, you can join Coeliac UK. As a Member, you receive a copy of the Food and Drink Directory, our Crossed Grain magazine and many more services. Currently, we have around 1000 new Members joining us each month. Membership is open to those who have been medically diagnosed with coeliac disease or DH. People who do not have a medical diagnosis can buy our information and resources. The Food and Drink Directory can also be bought separately for £10 (including postage and packing) from Coeliac UK. The telephone number to ring for a Membership form is 01494 437278, or alternatively go to our website www.coeliac.org.uk