The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

"Neuropathy associated with gluten sensitivity"

Discussion in 'Other Health News and Research' started by Kyla, Jul 28, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Canada
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077388/pdf/1262.pdf
    (Open access)

    .
     
  2. charles shepherd

    charles shepherd Senior Member

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    Thanks for posting this old but important paper on the neurological complications associated with coeliac disease - a condition which is still being misdiagnosed as ME/CFS + irritable bowel syndrome

    We are stressing the importance of screening for coeliac disease during the clinical assessment of people where a diagnosis of ME/CFS is being considered in our July MEA website survey:

    http://www.meassociation.org.uk/201...cuses-on-coeliac-disease-testing-2-july-2015/
     
  3. charles shepherd

    charles shepherd Senior Member

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    We are stressing the importance of screening for coeliac disease during the clinical assessment of people where a diagnosis of ME/CFS is being considered in our July MEA website survey:

    http://www.meassociation.org.uk/201...cuses-on-coeliac-disease-testing-2-july-2015/[/QUOTE]

    Current results, with a disturbingly high NO result:


    • If you have irritable bowel symptoms / syndrome in addition to ME/CFS, have you ever been tested to exclude coeliac disease?
      • YES - definitely (42%, 158 Votes)

      • YES - possibly (6%, 21 Votes)

      • I don't know (5%, 20 Votes)

      • NO (36%, 135 Votes)

      • I don't have any IBS symptoms (11%, 38 Votes)


        Total Voters: 372
     
    Kyla likes this.
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hi @charles shepherd
    I agree it's important to screen for Celiac, but it is also possible to have both.

    I had an existing diagnosis of Celiac (treated) when diagnosed with ME, so it wasn't exclusionary, and I was told it was a common comorbidity. I'm not sure whether there are any studies to back that up.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    I'm not sure whether there are any studies to back that up.[/QUOTE]

    There is one small but interesting UK study (from KCH) that I'm aware of:

    J Clin Pathol 2001;54:335-336 doi:10.1136/jcp.54.4.335-a
    High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome
    1. A Skowera1,
    2. M Peakman1,
    3. A Cleare2,
    4. E Davies2,
    5. A Deale2,
    6. S Wessely2
    +Author Affiliations

    1. 1 A recent study reported a prevalence of three in 100 cases in a primary care environment in which samples were taken from patients with a range of symptoms and signs.2 The second most frequent symptom reported by the endomysial antibody (EMA) positive patients was “being tired all the time”. We decided to examine the prevalence of EMA in patients attending our tertiary referral centre with the diagnosis of chronic fatigue syndrome (CFS).

      We tested serum from 100 consecutive patients (47 men, 53 women; median age, 40 years; range, 18–57) referred to our specialist clinic and satisfying the standard CDC criteria for a diagnosis of CFS, and from 100 healthy control subjects (45 men, 55 women; median age, 40 years; range, 18–68) who were blood donors at the South East Thames Blood Transfusion Service. The CFS samples had been stored as part of other studies, and were analysed retrospectively. EMA of the IgA class were detected by indirect immunofluorescence (IF) using cryostat sections of distal primate oesophagus as substrate (Binding Site, Birmingham, UK). Positive samples were confirmed using an enzyme linked immunosorbant assay (ELISA) for the detection of antitissue transglutaminase antibodies3 (Menarini Diagnostics, Wokingham, UK), tissue transglutaminase being the autoantigen responsible for the IF pattern of EMA. To exclude selective IgA deficiency, serum IgA concentrations were measured by laser nephelometry using specific antisera according to the manufacturer's instructions (Behring Laser Nephelometer II; Dade Behring, Dortmund, Germany).

      Two of the 100 CFS samples were positive for EMA using IF, and this was confirmed by ELISA, but none of the 100 control samples was positive. None of the subjects had selective IgA deficiency. Mean (SD) serum IgA concentrations among patients with CFS were 2.1 g/litre (0.98). Neither of the positive cases, both women aged 27 and 54, had reported symptoms typical of CD, although one had a history of constipation. Routine blood tests including serum proteins and full blood count were normal, and both had been seen by consultant physicians before referral. Both had histories of hypothyroidism, were taking long term thyroxine, and were currently euthyroid. Before the diagnosis of CD was made retrospectively, both had received cognitive behaviour therapy (CBT), a standard treatment for CFS. In both cases, CBT led to a substantial improvement in the quality of life and physical activity, but neither patient was symptom free at the end of treatment or at six months follow up. In both cases, CD was subsequently confirmed on jejunal biopsy after the retrospective identification.

      In general, it remains true that although a wide range of physical illnesses can be misdiagnosed as CFS (see Wessely et al for review4), in practice this is uncommon. In particular, if basic physical examination, investigations, and history are unremarkable, misdiagnosis of CFS and other physical illnesses is very unusual. Until now there have only been two reports concerning three cases of CD being misdiagnosed as CFS.5, 6

      However, there is now evidence from primary care of a surprisingly high frequency of unsuspected positive EMA tests in people with non-specific symptoms and a suggestion that a higher index of suspicion is needed when assessing such patients.2 We now extend that observation to our CFS clinic. Indeed, given our prevalence of 2%, and the fact that there is a treatment for CD, we now suggest that screening for CD should be added to the relatively short list of mandatory investigations in suspected cases of CFS.

      References

      1. Feighery F. Coeliac disease. BMJ 1999;19:236–9.


      2. Hin H, Bird G, Fisher P, et al. Coeliac disease in primary care: case finding study. BMJ1999;318:164–7.

        [Abstract/FREE Full text]

      3. Lock R, Gilmore J, Unsworth D. Anti-tissue transglutaminase, anti-endomysum and anti-R1-reticulin autoantibodies—the antibody trinity of coeliac disease. Clin Exp Immunol1999;116:258–62.

        [CrossRef][Medline][Web of Science]

      4. Wessely S, Hotopf M, Sharpe M. Chronic fatigue and its syndromes. Oxford: Oxford University Press, 1998.


      5. Watson R, McMillan S, Dickey W, et al. Detection of undiagnosed celiac disease with atypical features using antiretulcin and antigliadin antibodies. Q J Med 1992;84:713–18.
        [Abstract/FREE Full text]

      6. Empson M. Celiac disease or chronic fatigue syndrome—can the current CDC working case
     
  6. charles shepherd

    charles shepherd Senior Member

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    [​IMG]
    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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  7. Aurator

    Aurator Senior Member

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    Thanks for posting the 2001 study, Charles.

    My experience with coeliac disease and IgA deficiency is somewhat in reverse order compared to the way you have set it out above. I hope you don't mind my asking for advice.

    I had two blood tests six months apart and both found that I have no detectable IgA. It was only the second, more exhaustive, blood test that tested me for CD and it found I was negative. In spite of my known IgA deficiency I was not offered an endoscopy/biopsy to further investigate the possibilty that I was coeliac. I had had IBS symptoms for a long time, but these have improved somewhat since, on my own initiative, I gave up gluten (shortly after the second blood test confirming IgA deficiency and showing the negative result for CD.)

    I have not had any biopsy done, so have had no confirmation that I am in fact coeliac. Ought I to go back on a gluten diet for a while and get biopsied? Or is there another option (also after going back on a gluten diet) of having a more specific blood test that will detect coeliac disease even in an IgA deficient person? I am a UK resident.
     
    Last edited: Jul 28, 2015
  8. charles shepherd

    charles shepherd Senior Member

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    As you are in the UK, I think you ought to go back to your GP and ask him/her if he/she has discussed your case with a gastroenterologist (who are the experts when it comes to coeliac disease).

    As to whether you require further investigation to firmly exclude coeliac disease, this will depend on a full clinical assessment (e.g. do you have any symptoms suggestive of CD such as persistent mouth ulceration, peripheral neuropathy, skin rash - dermatitis herpetiformis ?), examination findings, and any other blood tests results (e.g. iron or folate deficiency anaemia) that are suggestive of CD.
     

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