To acknowledge Gut Feeling Week 2013 – and with the help of Coeliac UK – we have put together answers to some of the most common questions about coeliac disease.
If you haven’t heard of it before, coeliac disease is a lifelong autoimmune disease, which is triggered by eating gluten, a type of protein found in wheat, rye and barley. Some people with coeliac disease 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, infertility, cancer of the small bowel and increased risk of other autoimmune diseases.
Screening studies suggest that 1 in 100 people have coeliac disease; however, only about 10 to 15% of people with the condition are clinically diagnosed. Therefore under-diagnosis of coeliac disease is a significant problem.
Is it a genetic condition?
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 GP 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?
Symptoms of coeliac disease range from mild to severe and can vary between individuals. Symptoms can include bloating, diarrhoea, nausea, wind, constipation, tiredness, anaemia, mouth ulcers, headaches, sudden or unexpected weight loss, hair loss, skin rash (e.g. dermatitis herpetiformis), short stature, osteoporosis, depression, infertility, recurrent miscarriage and joint or bone pain.
Dermatitis herpetiformis (DH) is the skin manifestation of coeliac disease. It appears as red raised patches often with blisters that itch, sting or burn and can burst with scratching. It commonly occurs on the elbows, forearms, knees and buttocks, although it may occur anywhere on the body.
It affects around 1 in 10,000 people. It can appear at any age but is most common in people in their thirties and is more common in men than women.
Even though people with DH may not have any gut symptoms, they may have the gut damage which is associated with coeliac disease so should be tested for 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 gluten-containing diet prior to getting tested.
The National Institute for Health and Clinical Excellence (NICE) recommend having gluten in more than one meal everyday for at least six weeks prior to testing.
If the blood test result is positive, 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 a local anaesthetic sprayed to the back of the throat and/or sedation.
Although the procedure may not be particularly comfortable, neither passing the tube nor taking biopsies should be painful.
IMPORTANT: Gluten should never be taken out of the diet until all diagnostic tests (the blood test and endoscopy with biopsy) are complete because this is likely to cause a false negative test.
How is coeliac disease treated?
A lifelong gluten-free diet is the treatment for coeliac disease. When you are diagnosed, your GP 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 can take between 6 months and up to 5 years. However, you should start to feel better in the first few weeks after starting the gluten-free diet.
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 not 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 in the cereals wheat, rye and barley. Some people with coeliac disease are also sensitive to gluten-free oats.
Eating gluten triggers the production of antibodies which leads to the body attacking its own cells, resulting in gut damage.
Coeliac disease requires on-going review and management. There are serious problems associated with coeliac disease including osteoporosis, infertility, cancer of the small bowel 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, poultry, fish, eggs, cheese, milk, yoghurt, fruits, vegetables, pulses (peas, beans and lentils), rice, nuts and seeds, maize (corn)and potatoes are naturally gluten-free.
The charity Coeliac UK produces an annual Food and Drink Directory (available to free members; £10 to on members) which lists thousands of foods from tins of soup to ready meals that can be 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 can be included on a gluten-free diet.
Gluten-free products are available in the Free From section of the supermarkets, in health food stores, on the Internet and from mail order companies.
Can you get gluten-free food on prescription?
Yes, those medically diagnosed can get staple foods such as bread, pasta and flour on prescription. Currently people with coeliac disease or DH in England have to pay for gluten-free food on prescription, unless they meet the criteria for exemption (such as age, income etc). Prescriptions are free of charge in Scotland, Wales and Northern Ireland.
Can’t you just read the list of ingredients on the label?
All pre-packaged foods bought in the UK are covered by European Union (EU) wide allergen labelling law.
This means that if an ingredient that contains gluten has been used as a deliberate ingredient in a product it must appear in the ingredients list, regardless of the amount used.
Manufacturers must name the particular grain, that is, ‘wheat’, ‘rye’, ‘barley’, ‘oats’; or some will use the word ‘gluten’ as well, for example, ‘wheat gluten’.
This information must be included in the ingredients list so it is always important to check the ingredients list. Some manufacturers also use an allergy advice box to highlight if there is any gluten in a product. This is not compulsory but also helps in the selection of products on a gluten-free diet.
Are there some foods that are labelled gluten-free?
Yes, you may see the term gluten-free on products. When you see this term you know that the food is right for you to eat.
The term gluten-free is now covered by legislation on the labelling of gluten-free foods which came in to force in the UK on 1 January 2012.
Only foods which contain 20 parts per million (ppm) or less of gluten can be labelled gluten-free.This includes naturally gluten-free foods, specialist substitute products and uncontaminated oat products.
This legislation is based on the revised Codex standard published in July 2008.
What about eating out–it must be a complete nightmare?
In 2007, we launched an online Venue Guide where Members of Coeliac UK can upload details of places where they’ve had a good culinary experience. There are nearly 2,000 venues listed and we are growing the number of entries so that more and more people can find somewhere to eat that caters for their gluten-free diet. The Charity has launched a range of catering services to support this and you can find more information here.
Coeliac UK will also be holding its recipe competition to find the Gluten-free Chef of the Year for 2013 which asks professional chefs and catering college students to think creatively about catering gluten-free.
Coeliac UK produces information leaflets for more than 35 countries, with language translations that can be used when going on holiday.
Please subscribe me to your newsletter mailing list. I have read the