Myths about coeliac disease

'Coeliac disease is rare'…..MYTH

Research shows that coeliac disease affects 1 in 100 people in the UK, making it much more common than previously thought. Under-diagnosis is a big problem. Research suggests around 500,000 people have not yet been diagnosed.

'Coeliac disease is a food allergy'….MYTH

Coeliac disease is not a food allergy or an intoleranceFood intolerance is generally not life threatening but affects digestion, including symptoms of digestive discomfort, diarrhoea and bloating. Coeliac disease is not an intolerance to gluten. , it is an autoimmuneA reaction to a trigger which causes the body to attack itself. disease. In coeliac disease, eating glutenA protein that is found in the cereals wheat, barley and rye. causes the lining of the small intestine to become damaged. Other parts of the body may be affected. 

'You have to have gut symptoms such as diarrhoea to have coeliac disease'….MYTH

Coeliac disease is known as a 'multi-system' disorder - symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity. 

'Only children get coeliac disease'….MYTH

Coeliac disease can develop and be diagnosed at any age. It may develop after weaning onto cereals that contain gluten, in old age or any time in between. Coeliac disease is most frequently diagnosed in people aged 40-60 years old. Delayed diagnosis is common, Coeliac UK research shows the average time it takes to be diagnosed is 13 years. 

'You have to be underweight to have undiagnosed coeliac disease'….MYTH

Recent research suggests that most people with coeliac disease are of normal weight or overweight at diagnosis. Body weight alone should not be used to decide whether or not you should be tested for coeliac disease. 

'You can 'grow out' of having coeliac disease'….MYTH

Coeliac disease is a lifelong condition. The gluten-freeWhen a food has less than 20 parts per million (ppm) of gluten so it is safe for people with coeliac disease to eat. diet is the only treatment for coeliac disease. If gluten is introduced back into the diet at a later date, the immune system will react and the gut lining will become damaged again. If someone following a gluten-free diet is re-tested for coeliac disease (antibody blood test, gut biopsyThis simple procedure looks for gut damage. A thin tube is passed through the mouth, down to the upper part of the small intestine. Then a tiny sample of gut lining is collected. This can be done using local anaesthetic and/or sedation. ) it would be expected that the tests are negative. This means they are responding well to the gluten-free diet. There are no antibodiesExist in the blood and are used by the immune system to attack viruses or bacteria. in the blood because there is no gluten for the immune system to react against. Taking gluten out of the diet allows the gut to heal.

'A breadcrumb won't hurt someone with coeliac disease'....MYTH

Even very small amounts of gluten can be damaging to people with coeliac disease. Therefore, taking sensible steps to avoid cross contaminationWhen food that is gluten-free comes into contact with food that has gluten in it, and so is no longer gluten-free. with gluten is important.

Top tips include:

• keep cooking utensils separate during food preparation and cooking
• avoid frying food in the same oil that has previously been used to cook foods which contain gluten
• use a clean grill, separate toaster or toaster bags to make gluten-free toast
• use separate breadboards and wash surfaces thoroughly
• use separate condiments like jam, butter, mustard and mayonnaise

'Coeliac disease only affects people of European origin'….MYTH

Coeliac disease affects all ethnic groups and is common in Europe and North America, as well as in southern Asia, the Middle East, North Africa and South America.