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
WOW – I have had CFS for 8 years and always had guts problems with the best diagnose as “it works it doesn’t work probably but we don’t know why” and this has been for all of my 50 years (I had colic for 2 years from birth).
In the summer I was put on the FODMAP diet by a dietician as I was getting “stuck” with solving all my gut problems. This has shown me that I am gluten and fructose intolerant. But as my CFS isn’t too bad it is hard to say whether it has given me more energy as with all CFS my energy levels are so variable but my gut feels much better. I have also been told by my lovely GP that “I am a shinning example of somebody who manages her illness”.
More interesting is that a few weeks ago my brother (37 years) was told he was coeliac and that was his cause of the very bad skin (dermatitis herpetiformis) and that took 3 years and 3 dermatologists to be diagnosed. A few weeks before that my 10 year old nephew (of a different brother) was told he was coeliac too (my sister-in-law has suspected for years) and he has the more common gut problems. A few years before this a niece (my sisters) was told that she has a gluten intolerance too again with gut problems.
I have never been tested for coeliac (although a sample from an endoscopy over 25 years ago showed some abnormalities but they said that they said shouldn’t affect me) although I have had had many tests over the last 30 years.
My brother has 3 boys and him and his boys are all due to be gene tested and we have been told that if any of those show up with the TGA or EMA then all blood relatives should be tested too. Although I don’t know if they realise what the have let themselves in for as I am the eldest of 9 and to date I have 13.5 nieces and nephews!!
What hit me first on the list was the tooth enamel problems listed above. My dentist has been stumped for years why my teeth have been dissolving with no apparent reason and since I have had CFS I have had nothing but bother with my teeth which has never been a problem before.
Do you think it is worth getting tested and would I have to eat gluten for a while beforehand. I am presently eating bread about once a week as it is my downfall but I didn’t eat it for over 6 months on the diet.