Spotlight on Coeliac Disease – Dispelling Myths

This week from 8th – 12th May 2017 is Coeliac Awareness Week in the UK. Here are 7 myths surrounding the condition that I want to dispel:

1. Coeliac Disease is an allergy to gluten – Myth!

Coeliac Disease is often thought of as an allergy or intolerance to gluten but it is actually an auto-immune disease. A food allergy occurs when a reaction happens very quickly after consumption of that food and in very severe cases cause anaphylaxis, in comparison, a food intolerance is a less severe response and often the symptoms are localised to gastrointestinal problems.

An auto-immune condition is where your immune system attacks healthy cells in your body by mistake. In the case of Coeliac Disease, your body sees gluten as a threat and attacks it. This causes damage to the lining of the small intestine, specifically to structures called villi. Villi are finger-like projections and have an important role in the absorption of food as they increase the surface area of your gut, maximising absorptive capacity. In coeliac disease, the villi lose their normal structure and become either blunted or flat. Blunt or flat villi have less capacity to absorb important nutrients, vitamins and minerals that the body needs.

2. Having the odd bit of gluten is OK – Myth!

Removing gluten from the diet is the only treatment for Coeliac Disease and it is a lifelong treatment. Even small amounts can cause damage to the villi. After a while, the removal of gluten from the diet will lead to the re-growth of the villi and they will regain their finger-like structure again. It is very hard to stick to such a strict diet but it is really important for a healthy gut if you have Coeliac Disease.

It is impossible to completely avoid gluten forever as accidents do happen and gluten will be eaten without meaning to. Because of this it is important to be as strict as possible with the gluten-free diet to reduce the number of times you get exposed to it. So asking for bread to be toasted in a separate toaster is just a tactic to reduce cross-contamination – not being difficult, but being safe!

3. Gluten is only found in wheat – Myth!

Gluten is a protein found in the seed of cereal grains and it is found in many different foods – some more obvious that others!  Gluten is found in wheat, rye and barley.

Gluten is actually made of different proteins. In wheat, gluten is made up of gliadin and glutenin. Barley has a similar protein called hordein, and rye has a protein called secalin. Gliadin, hordein and secalin all contain the same property that causes the autoimmune response in Coeliac Disease.

Oats have a similar protein called avenin, however, current UK recommendations now say that un-contaminated, gluten-free oats can now be eaten from the point of diagnosis of Coeliac Disease. Gluten-free oats can be bought in the supermarket and as long as they are labelled as ‘gluten-free’ then they can be eaten, as this means that they contain less the 20ppm (parts per million) threshold for safe consumption. A small percentage of people with coeliac disease will still be sensitive to oats.

Standard oats in the supermarket are produced in the same place as wheat barley and rye, which makes them unsafe. Any product labelled  ‘pure oats’ or ‘100%’ oats  are contaminated and are not gluten-free.

4. Genetics has no role in Coeliac Disease – Myth!

Coeliac Disease isn’t a rare condition, it affects 1 in 100 people in the UK but this is just the tip of the iceberg. It is thought that around 500,000 people are yet to be diagnosed in the UK (1).

There is a genetic link and Coeliac Disease can be seen to run in families, your risk of having Coeliac Disease increases to 1 in 10 if you have a close relative with the condition, but that is still a 90% chance of not having it! There are some closely linked other auto-immune diseases that you may also see in the family including Type 1 Diabetes and autoimmune thyroid disease.

The gene that pre-disposes you to Coeliac Disease is called Human Leucocyte Antigen (HLA). More than 95% of people with Coeliac Disease have the HLA-DQ2 heterodimer and the remaining have HLA-DQ8 heterodimer. Around 30% of the population carry HLA-DQ2 or HLA-DQ8 but only 1% develops coeliac disease (2). Additional environmental factors must also play a role in the development of the condition and more research is looking into what they might be.

5. Coeliac Disease means that you have terrible stomach aches – Myth!

This is a big misconception when it comes to understanding the symptoms of having coeliac disease. Yes- many people experience tummy aches and pains, diarrhoea and/or constipation and bloating and these are known as Classical coeliac disease symptoms. Other classical symptoms include lethargy and nausea and vomiting.  Some symptoms are due to the malabsorption that occurs because of the damaged villi, these include anaemia, weight loss, mouth ulcers, osteoporosis and vitamin B12 deficiency.

Then there are even less known symptoms including depression, miscarriages, neurological problems (ataxia), tooth enamel problems and hair loss.

There is also a skin manifestation of Coeliac Disease called Dermatitis Herpetiformis, which is a skin rash that also responds to the removal of gluten.

Some people have no symptoms of coeliac disease at all, this is called asymptomatic coeliac disease. With this group the condition is often picked up accidently and when gluten is removed from the diet they won’t feel any different.

It can be hard to remove gluten from your diet if you have coeliac disease but don’t have symptoms. It is important to remember that the severity of your symptoms doesn’t always reflect what is going on inside and if you have Coeliac Disease, symptomatic or not, a strict gluten free diet it vital.

6. Coeliac Disease can be self-diagnosed– Myth!

Coeliac disease in adults can only be truly diagnosed with a duodenal biopsy, an endoscopic procedure performed by a gastroenterologist where a tiny bit of your small intestine is examined to identify the structure of the villi. This procedure is normally done after a blood test to check for antibodies (tissue transglutaminase tTG). In children the small bowel biopsy may not be performed.

The classic symptoms of coeliac disease, like bloating and altered bowel habits, are very similar to those of irritable bowel syndrome (IBS) and sometimes coeliac disease goes undiagnosed and passed off as IBS. If you have ongoing gut symptoms go to your GP for the initial blood test for the Coeliac Disease antibodies.

During the stages of diagnosis you must keep eating gluten otherwise you can get a false negative result.

Online kits where you send away hair or small blood samples, or any skin prick tests will not give you a diagnosis of coeliac disease. A proper diagnosis is important so that you can have access to routine follow-up by your gastroenterologist, GP or dietitian.

 7. Having Coeliac Disease means you can never eat out again – Myth!

Coeliac UK are working hard to support those with Coeliac Disease when eating out. Having a lifelong condition can be isolating and we need to overcome this problem by increasing awareness and provision for those with Coeliac Disease.

For 2017 Coeliac Awareness week, Coeliac UK are campaigning for ‘The Gluten Freevolution’ – a mission to make living gluten free easier, especially when eating out.

Coeliac UK have an accreditation scheme where the caterer or restaurant can display their gluten free symbol and you know that it has been checked for safety.


Coeliac UK’s GF symbol

On the coeliac UK website they have a venue guide which currently has 6513 gluten free accredited venues across the UK – check it out.

Going on holiday can also be an anxious time as getting gluten-free foods can be harder in some countries. To help, Coeliac UK have also developed some travel cards for 35 different countries available for download. The travel cards have translations of useful phrases, local cuisine and information on local labelling laws.

For more information on Coeliac Disease visit Coeliac UK. And if you think you might have Coeliac Disease make an appointment with your GP who may send you for a simple blood test.

Written by Lilia Malcolm, May 2017


  2. Kinsey, L. An Update from the 16th International Coeliac Disease Symposium. Complete Nutrition Vol. 15 No. 4. 2015

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