When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
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  1. aquariusgirl

    aquariusgirl Senior Member

    Friend just tested positive for HLA b27.

    This wasn't flagged in Livewello,

    is that odd?

    Any pointers ?

    Also has the dodgy FUT2 gene variants
    missfire likes this.
  2. CCC

    CCC Senior Member

    HLA-B27 defects (for want of a better word) can cause either or both:
    • haemochromotosis (iron accumulation - just monitor iron levels to track this)
    • inflammation (ankylosing spondylitis, iritis and IBS are some of the most commonly reported).
    But having the defect doesn't necessarily cause problems. So you need a bit more information.

    What is the exact defect? Which genes? What are the symptoms?

    There are three genes (or SNPs? I don't know what to call them), and everyone has two copies of each one.

    For example, my husband is homozygous for one of the less problematic genes, so he shouldn't have issues according to the doctor, but he still needs to give blood once a year. But his brother has the same genes, and he has ankylosing spondylitis, iritis and more. My husband can eat anything he wants, his brother needs to severely restrict starches. My son is heterozygous for one gene (no prizes for guessing which parent donated that one!) and he is not affected at all from it.

    Other people we know are homozygous for the 'bad' gene and they have to give blood every three months, and the blood gets thrown away because it is unusable for anyone else.

    So being told you 'have' hla-b27 might be bad, a minor nuisance, or indifferent.

    Doctor advice can be variable. Some try to tell you it doesn't matter at all - they haven't yet caught up with discovery of the gene back in the mid-1990s. Others try to tell you that even being heterozygous is a cause for concern. Some doctors denounce any form of dietary advice, others give too much weight to diet. It's like CFS - it's so individual and you need to try for yourself.

    EDIT: I don't know anything about that other FUT2 gene variant thing. Sorry.
    Last edited: Mar 25, 2017
    missfire likes this.
  3. Valentijn

    Valentijn Senior Member

    No, Livewello can't flag it because 23andMe doesn't test for it. HLA types are almost all determined based on SNPs which have 3 or 4 known allele variations, instead of the usual 2. 23andMe only seems to test in an either/or manner - if it's not A, it's G, etc. So it probably can't handle a situation where "not A" might still be C, G, or T.
    aquariusgirl likes this.
  4. ryan31337

    ryan31337 Senior Member

    South East, England
    I tested positive for HLA-B27 when being worked up years ago for ankylosing spondylitis, subsequently had an MRI that was negative for AS (phew).

    My very thorough POTS doctor flagged it up in a letter to GP and 'wondered' if I had been seen by an expert for it...I don't think GP had a clue who to even ask, nothing done about it, same situation with a positive ANA :whistle:
    missfire and Valentijn like this.
  5. aquariusgirl

    aquariusgirl Senior Member

    So this friend is going to a rheumatologist for evaluation. Sounds strongly positive for AS & guess what ? On the AS of usa association home page it says that there is a classic theory that bacterial translocation from the gut triggers Hal b27.

    This friend has the problematic FUT 2 gene associated w/ Crohns & I think ulcerative colitis.

    He has Ibs & iritis.

    Interesting no?

    On a tablet sorry fir typos.
  6. missfire

    missfire Knock Down, Bounce Back

    Ankylosing Spondylitis can cause chronic fatigue syndrome.... I am a walking example as I nap right now.

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