Why our July ‘Quick Survey’ focuses on Coeliac Disease testing | 2 July 2015

If you have irritable bowel symptoms, we would like to know if you have ever been tested to exclude Coeliac Disease. Please visit our ‘MEA Quick Survey’ during July and let us know. You will find the survey towards the bottom of our homepage.

The reasoning behind this website question is two fold:

Firstly, it relates to my concern about people with ME/CFS who are putting themselves on a gluten-free diet without first checking to see if they could have adult onset coeliac disease.

Some people with ME/CFS report that their symptoms improve on a gluten-free diet, especially if they have irritable bowel type symptoms.

However, in some cases this is because they are actually treating unrecognised/undiagnosed coeliac disease – where there is very significant gluten sensitivity.

Secondly, it relates to people with irritable bowel syndrome (or IBS-type symptoms) plus fatigue, who are being diagnosed as having ME/CFS without first being tested for coeliac disease (along with other possible causes of these symptoms)

Coeliac disease has a number of symptoms that overlap with ME/CFS and must be therefore be considered and excluded in anyone who has irritable bowel symptoms and fatigue.

Non-bowel symptoms suggestive of coeliac disease include:

anaemia – B12, folate or iron
 
ataxia (lack of co-ordination when walking)
 
hair loss
 
joint pains
 
liver abnormalities
 
mouth ulcers
 
neuropathy – causing sensory symptoms
 
skin rashes (dermatitis herpetiformis)
 
tooth enamel problems

It is important to note that not everyone with coeliac disease has diarrhoea or loses weight.

Coeliac disease is an important illness that can also cause non-bowel complications, including affecting the nervous system. So it needs to be diagnosed early and managed by doctors and dieticians who are experts in this area.

This is why The MEA recommends a coeliac disease screening test – which looks for antibodies to gluten – as part of the routine investigations for making a diagnosis of ME/CFS. This test can be done by your GP.

The most accurate blood tests for coeliac disease are tissue transglutaminase antibody (TGA) and Endomysial antibody (EMA).

The test used depends on the laboratory performing the test. They may measure one of the antibodies, or sometimes both.

It is important to continue eating gluten until you have had a blood test because not eating gluten at the time of your blood test dampens down the antibody production,and you may produce an inaccurate result.

So if you haven’t had a CD screening test, please don’t go on a gluten-free diet before first talking to your doctor about what you are going to do and having a test if appropriate.

And if you have ongoing symptoms that suggest coeliac disease, but have had a negative blood test, ask your GP to check to see if you have been tested for IgA deficiency.

The overlap between ME/CFS and Coeliac disease is covered in more detail in the MEA purple booklet, as are CD screening tests in the Investigation section

The Coeliac Disease website also contains lots of useful information on symptoms, diagnosis and management:

www.coeliac.org.uk/coeliac-disease/getting-diagnosed/blood-tests/

Dr Charles Shepherd
Hon Medical Adviser, MEA

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