Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Mast Cell Activation Syndrome test positive per Colonoscopy

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Nickster, Oct 10, 2017.

  1. Nickster

    Nickster Senior Member

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    Los Angeles, CA
    My sons test from his colonoscopy came back with mast cell counts of 27-40/HPF and has been diagnosed with mast cell activation syndrome. Are these numbers high or low? Just want the opinions of others.

    It's interesting as they were able to take his colonoscopy test that he took 2 years ago and test the slides this week and came up with this result. Who know that a test from 2 years ago could show results today.
     
    Last edited: Oct 10, 2017
  2. bertiedog

    bertiedog Senior Member

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    Had you thought of doing a stool test to see if he has high levels of pathogenic bacteria in his gut? It might be very illuminating, it certainly has been for me. Ubiome is a good one. I don't know if you have come across CFS Remission but its full of very informative posts regarding gut bacteria and its association with things like MCAS.

    Pam
     
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  3. Nickster

    Nickster Senior Member

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    Interesting, I will check with the doctor about this additional test. For now she wants him to follow that mast cell protocol.
     
  4. anciendaze

    anciendaze Senior Member

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    27-40 per high power field is quite high enough to count as MCAS/MCAD. There is argument about people with symptoms, but lower numbers. That number, plus a few other indications, is a real positive.
     
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  5. justy

    justy Donate Advocate Demonstrate

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    Sorry to hear this, MCAS sucks. But at least he has a dx and hopefully good Drs who are MCAS aware?

    Have you read Afrins book? it is great.
     
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  6. Nickster

    Nickster Senior Member

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    Yes, I read Dr Afrins book and it was very helpful. We will see where this takes us.
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    I am driving up to a MCAS specialist in New York in one week and I am nervous! So sorry your son tested positive but perhaps he can get some treatment, I hope!
     
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  8. kangaSue

    kangaSue Senior Member

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    @Nickster An elevated mast cell count in the GI tract can also be caused by Inflammatory Bowel Disease or even more so with an impaired bowel blood flow causing chronic intestinal ischemia where mast cell degranulation contributes to causing ischemia (and might only show as a bit of colitis in a colonoscopy).
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

    A Doppler Ultrasound of the mesentery arteries can help with identifying a bowel blood flow issue (if the colonoscopy wasn't revealing of anything else) but it misses the up to 30% or so of chronic intestinal ischemia cases who have a non-occlusive basis and which can occur where autonomic dysfunction affecting cardiac output regulation (POTS, OH) is present.

    The mast cell stabilizer ketotifen can be beneficial to treat symptoms in this setting.
     
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