Frequently asked questions
Is coeliac disease catching?
No…..although it does run in families.
Is coeliac disease hereditary?
There is an increased risk of 1 in 10 when coeliac disease exists in a family, so anyone who has a relation who is a coeliac should be extra vigilant.
What are the long term health risks?
Thankfully, the health risks associated with coeliac disease are minimised as long as you stick to a gluten-free diet. However, it can have longterm serious effects if left undiagnosed until later life as people with coeliac disease have a higher risk of osteoporosis and gut cancer.
How many people have coeliac disease in the UK?
We estimate that there are around 125,000 people who have been diagnosed with coeliac disease. However, recent studies show that 1 in 100 people have coeliac disease which means there are almost another 500,000 people who have undiagnosed coeliac disease.
What are the symptoms?
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 have the same symptoms but if left untreated can suffer from weight loss and stunted growth.
Dermatitis herpetiformis (DH) is a skin manifestation of coeliac disease, which also usually affects the gut - although the gut is damaged by gluten, gut symptoms are not always seen. People with DH react to gluten by developing itchy, sore blisters on the skin - particularly on the elbows, knees and buttocks. Some people with previously diagnosed coeliac disease can also get DH
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 fine 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 GPs, 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. However, it's vital that you don't change your diet to cut out gluten until you are correctly diagnosed, otherwise antibodies necessary for the diagnosis can't be detected.
How is it treated?
Management is a total 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.
You have to remember that before diagnosis 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 anything from 6 months up to 2 years. However, most people feel better in the first few weeks.
What is the difference between an allergy and intolerance?
'Food intolerance' describes a range of reactions to food including true food allergy and coeliac disease which both affect the immune system. Coeliac disease is an auto-immune disease which is caused by gluten intolerance. It is life-long and there is a specific procedure for diagnosis, which involves having an endoscopy and biopsy. Diagnosis of 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.
Food intolerance which does not affect the immune system is usually a temporary problem affecting people of any age. Symptoms can include diarrhoea, constipation, skin problems and asthma, and the only way of diagnosing it is through an exclusion diet.
To ask further questions on coeliac disease, call our helpline on 0870444 8804 or email us via our contact form.
