Questions and answers
Click on the following questions to find answers:
How common or widespread is coeliac disease?
Studies have suggested that 1 in 100 people may have coeliac disease. There have been a number of projects that Coeliac UK has recently been involved with which clearly supports this theory. One is the European Cluster Project which included studies from across European countries which found the average incidence is 1 in 100.
How many people have coeliac disease in the UK?
Latest research estimates that there are around 125,000 people who have been diagnosed with coeliac disease. This suggests that there are nearly another 500,000 people with coeliac disease who are undiagnosed on the basis that 1:100 have the disease.
So, what exactly is coeliac disease?
Coeliac disease is one of the most common genetically linked diseases in Europe and it is caused by intolerance to gluten, a protein found in wheat, barley and rye. Some coeliacs also react to oats. Coeliac disease is a life-long condition, which affects the whole body. Gluten damages the gut, which prevents normal digestion and absorption of food. If undetected in the long term it can lead to, amongst other things, anaemia, poor bone health and weight loss because your body is not absorbing food properly. Unfortunately, you are born with the genes and the symptoms can be triggered at any time in your life - for example during illness, stress, or after an accident, but the majority of people are diagnosed mid life.
What harm does the disease do - I mean how dangerous is it, or is it catching?
Well it's not catching …..although it does run in families. There is an increased risk of 1 in 10 when coeliac disease exists in a family, so anyone who has a relation who has coeliac disease should be extra vigilant. Thankfully, the health risks associated with coeliac disease are minimised as long as you stick to a gluten-free diet. However, it can have long-term serious effects if left undiagnosed until later life as the risk of osteoporosis and gut cancer is increased.
What are the symptoms, what should we be looking out for?
The symptoms are very variable but can include tiredness, diarrhoea, anaemia, abdominal discomfort, weight loss, vomiting and mouth ulcers but some people don't have any symptoms at all. Children with coeliac disease can experience the same symptoms but if left untreated can suffer from weight loss and stunted growth. Dermatitis herpetiformis (DH) is a related condition, which affects the skin and usually the gut - although the gut is damaged by gluten, gut symptoms are not always seen. Some people with coeliac disease can also get it. People with DH react to gluten by developing itchy, sore blisters on the skin - particularly on the elbows, knees and buttocks.
What should people do if they suspect they might have coeliac disease?
They should go straight to their GP. Diagnosis involves having a blood test which the GP can do followed by a gut biopsy (a tube passed down your throat into your stomach) done under sedation at your local hospital by a gastroenterologist. Unfortunately, because general awareness of coeliac disease even amongst GP's is poor there are some GPs who are not as familiar with the disease as others. So, if you think your symptoms fit the bill do persevere with your GP and ask for a blood test. NEVER CHANGE YOUR DIET UNTIL YOU HAVE A DIAGNOSIS!
How is it treated? What is the management of the disease?
Management is a gluten-free diet for life under professional supervision. When you are first diagnosed you will see a dietitian who will help guide you through the steps of changing your diet. It may take a while to get your diet sorted out but with perseverance you will get there. Before diagnosis you have to remember that the gut has been damaged by taking in gluten often for a long time. By switching to a gluten-free diet the gut will start to heal but this can take up to 2 years. However, most people start to feel better in the first week or two.
What is the difference between an allergy and an intolerance?
'Food intolerance' describes a range of reactions to food including allergy and coeliac disease which both involve the immune system. Food intolerance which does not affect the immune system is usually a temporary problem that affects young children. Coeliac disease is an autoimmune disease which is caused by gluten intolerance. It is life-long and there is a specific procedure for diagnosis, which is gut biopsy. Diagnosis of a food allergy is based on diet history, detection of antibodies and other laboratory tests. Symptoms can include swelling of the mouth and throat, vomiting, colic, skin rashes, cough and hypotension and may result in anaphylaxis. In food intolerance symptoms include diarrhoea, constipation, skin problems and asthma and the only way of diagnosing it is through an exclusion diet.
What kind of foods have gluten in them?
Well, lots of everyday food includes gluten but there are equally masses which don't and you have to take a positive approach as there are more foods you CAN eat than can't. Coeliac UK produce an annual Food and Drink Directory which lists around 11,000 foods, from tins of soup to ready meals, that you can eat and this is available from them. Some food manufacturers are fantastic and have gluten-free symbols on their foods, so look out for them. Some supermarkets have excellent labelling whilst others have special 'free-from' ranges which carry very good gluten-free foods. By using your Food and Drink Directory you should be able to build up a knowledge of which foods contain gluten and which are safe to eat.
Can anyone get hold of this Directory?
If you are diagnosed with coeliac disease, you are eligible to join Coeliac UK and you will receive a free copy of the Directory. Currently, we are getting around 600 new members a month and hopefully, after our awareness campaign, more will want to join after they have been diagnosed. Membership is limited to medically diagnosed coeliacs. Membership is free - although we do ask for a donation. The Directory can also be bought separately for £8 (+£2 postage and packing) from Coeliac UK (see details below). You can join on line here.
Can't you just read the list of ingredients on the label?
Foods do contain hidden gluten - for example who would have thought that Chewits sweets have gluten in them? All food packaging must now comply with the EU Regulations that came into force in November 2005. This means that any packaged food that contains gluten will have to specify this on the pack, either in an allergen advice box or in the ingredients. This means that hidden gluten will now be easy to spot.
Can you get gluten-free food on prescription?
Yes you can get staples such as bread, pasta, plain biscuits etc on prescription, which you can organise with your GP. Prescriptions are not free for people with coeliac disease unless they are exempt for other reasons.
What about eating out - it must be a complete nightmare?
It can be, which is why we have launched our online gluten-free restaurant guide last year and have been regularly signing up restaurants that provide gluten-free menu options.
And what about going on holiday or even going abroad?
Coeliac UK produces an information sheet about going on holiday which is available from our website and is also available by writing to us. There are coeliac societies around the world and the best advice is to contact them and do your own research.
What research does the Charity fund?
We are already spending £760,000 on four projects which are at the cutting edge of research into coeliac disease. These are:
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An ambitious project at Imperial College London, which aims to search all 30,000 human genes to identify which variants play a part in the likelihood of someone developing coeliac disease.
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A study at the Child Health Institute, where scientists aim to use a map of the disease to develop a treatment to fool the immune system into accepting gluten.
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A project in Australia that is identifying which fragments of gluten cause coeliac disease. The hope is to develop a better way to diagnose the condition and possibly non-toxic gluten.
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An investigation at City Hospital, Birmingham, into the role special cells in the intestine play in stopping iron being absorbed properly by people on a gluten-free diet.
We need more regular funding to move nearer to treatment and even a cure.
