Frequently asked questions
How many people in the UK have coeliac disease?
Screening studies suggest that 1 in 100 people have coeliac disease; however, only 1 in 8 people have been diagnosed. Therefore under-diagnosis of coeliac disease is a significant problem.
Is coeliac disease genetic?
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.
Sometimes a stressful event such as pregnancy, childbirth or a bout of gastroenteritis can trigger coeliac disease in some people. The majority of people are diagnosed between 40 - 60 years of age.
What are the long term health risks?
Coeliac disease requires on-going review and management. There are serious problems associated with coeliac disease including osteoporosis, certain kinds of gut cancer and increased risk of other autoimmune diseases.
Following a life-long gluten-free diet helps to reduce the risk of developing the health problems associated with coeliac disease.
What are the symptoms?
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, diarrhoea, excessive wind, heartburn, indigestion, constipation, weight loss (but not in all cases), tiredness, any combination of iron, vitamin B12 or folic acid deficiency, recurrent mouth ulcers, hair loss, headaches, defective tooth enamel, osteoporosis, depression, infertility, recurrent miscarriages, joint or bone pain and neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).
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.
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 it 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 food allergy, intolerance and coeliac disease?
It is important to distinguish between food allergy, intolerance and coeliac disease as these 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.
To ask further questions on coeliac disease, call our helpline on 0870444 8804 or email us via our contact form.
