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Mast Cell Activation Symptomatology

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 4, 2012.

  1. nanonug

    nanonug Senior Member

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  2. roxie60

    roxie60 Senior Member

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    Interesting the overlap in symps. I dont have the persistent skin lesions and that seems to be a major marker for mastocytosis. I have eczema and the Drs seem to have it right when I dont eat the foods I am 'sensitive' to the eczema decreases.
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    I don't have welts or pass out. I do have high levels of histamine in my blood and a rash that is only on my legs. Not sure if it's the same one. Either way, I have extreme allergy. I don't have vomiting or diarhea ever, I have constipation. Who the heck knows!
     
  4. taniaaust1

    taniaaust1

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    The common form of mastocytosis is diagnosed by skin signs/tests of it etc. There is other form thou which is a lot rarer and may not necessairly be showing up on the skin but rather mast cells build within the body in places (Systemic mastocytosis). Those with that may end up getting a wrong diagnoses of ME/CFS.

    Anyone who's getting a lot of flushing, allergies etc.. probably should be tested (I had a blood test for that ).. which I know doesnt always pick it up but apparently can most of the time.
     
    Xandoff likes this.
  5. nanonug

    nanonug Senior Member

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    Fogbuster and Xandoff like this.
  6. nanonug

    nanonug Senior Member

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    Indeed! Was the blood test you did the tryptase one?
     
  7. roxie60

    roxie60 Senior Member

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    Ive had allergy probs since age 12....they have been a constant irritant. I am severly allergic to dust, cant stand dst but can do anything about it without getting sick. Tried paying someone for a bit to come in an clean but I still had probs cause it took awhile for the dust to settle, I find it better for my allergies to not disturb the dust. Now I get to add some foods as of 4 weeks ago to the list.
     
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  8. nanonug

    nanonug Senior Member

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    Roxie, are you able to send/email the document above to your doctor? I really think you should explore the mast cell activation syndrome hypothesis...
     
  9. roxie60

    roxie60 Senior Member

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    she doest accept emails with patients but I will see about printing it and giving to her. I need to google anaphylactic symptoms and food.
     
  10. nanonug

    nanonug Senior Member

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    Look at table 3 on the document...
     
  11. roxie60

    roxie60 Senior Member

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    I see the list now. I do have a number of those (thank goodness not all, guess it could always be worse ;-))
     
  12. jeffrez

    jeffrez Senior Member

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    I had ideopathic anaphylaxis to everything at one point after an adverse reaction to a glutathione injection. I still do when I eat certain foods. Some of the symptoms were similar to SM/MCAS, and it might very well have been SM/MCAS. It was treated fairly successfully, allowing me to eat again, with systemic corticosteroids (coming off those caused the CFS, though :-().

    Guess what I'm saying is that personally I doubt MCAS is at the root of ME/CFS for most people, but allergic reaction certainly can contribute to symptoms, as well as weaken adrenals. And gut permeability or leaky gut can certainly be a huge factor in allergy and feeling unwell.
     
  13. taniaaust1

    taniaaust1

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    Yes ..a tryptase test.
    I also had a specialist look over my skin for mast cell issue spots. I thou had no abnormalities showing at the time.

    I have had a darier sign thou (one of the diagnostic things for mastocytosis) ..which a stupid doctor put down to a rash which had blistered in the sun (the spot had blistered up to touch, it was nothing to do with the sun) but I unfortunately didnt know about mast cell disorder back then, so no expert in mast cell issues got to see the darier sign (which lasted 2 weeks or so). I wasnt having flushing either by the time I got in with the specialist (which took about 8mths to get in to see).

    I really do think I have a mast cell issue from that eg the darier sign (and also from my family history, uncle has systemic mastocytosis)...and also having both POTS and orthostatic hypertension also points to that but I also do seem to have ME too (viral onset to the illness.. also had extremely bad mono in past.. I seem to have TH2 dominance).

    some mastocytosis treatments seem to help me (antihistamines.. I think I feel a touch weller when Im taking them).

    (I suspect something genetic may make one susceptable to both).
     
  14. nanonug

    nanonug Senior Member

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    The explanation I have seen for a proper way to do a tryptase test is:
    1. When not having any symptoms, have blood drawn for tryptase (test 1)
    2. While having symptoms, again draw blood for tryptase (test 2)
    3. If test 2 tryptase is greater than 1.2 times test 1 tryptase plus 2, then mast cell activation is confirmed
    There is also 24 hour urinary N-methylhistamine and protaglandin D2.
     
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  15. taniaaust1

    taniaaust1

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    nanonug..there are also normal range for tryptase.. so if that was abnormal they could also tell there were issues from the first test.
     
  16. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Just about all of my current symptoms are explained via histamine. That ranges from the terrible insomnia (with histamine being an alertness neurotransmitter, and diphenhydramine usually providing sleep for me), to the bottoms of my feet being sore in the morning (since hands and feet are dense with mast cells, these areas being most likely to be injured from contact with the world). The H4 receptors in the hypothalamus might even explain the temperature dysregulation. Then there are the burning eyes, dyspnia, etc., it goes on and on.

    However, I'm thinking that the etiology is fairly straightforward in me and doesn't require any pathology (such as hyperplasia or mast cell defects) other than this: MTHFR mutation makes for a backing up of systemic histamine, that would otherwise be degraded in normal systems. The chronic excess of histamine results in mast cells becoming unstable. That can take place because of a sort of pan-autocrine effect (I've been meaning to see if such effect is known to exist). Alternately, the excess histamine might activate some leukocyte (a monocyte lineage would be a good candidate for that), which releases some cytokine that in turn destabilizes mast cells.

    I think of an old Western movie where somebody is transporting nitroglycerin in a wagon. In the cool morning, the nitro is stable; but as it gets hotter in the daytime sun, it becomes more and more unstable until any small shaking or jarring might set it off. Such are destabilized mast cells.

    What to do? Break down the histamine, blockade the histamine, stabilize mast cells. Inhibiting histamine synthesis is probably not viable.


    Still, for others here, the main symptoms probably come from being poisoned (by products of internal microbes, or else from external chemicals and molds etc, or else leaky gut can make almost any benign protein into a seeming poison). I'd get re-poisoned that way from too much sugar = candidiasis. Others here probably suffer most from some persistent and flaring infection - I've had a raw throat and enlarged submandibular lymph nodes for years, even though that's gotten better year by year. Even so, I'm solidly in the histamine camp for now.
     
  17. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Maybe the difference being that you are highly mediated by IgE. I don't think that I am. Can I ask why you took a glutathione injection? I ask because I've been thinking over my own health history as relates to a pre-CFS assortment of traits and conditions.
     
  18. nanonug

    nanonug Senior Member

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    That has also been my case for some time now.

    Mast Cell Activation Syndrome is diagnosable and somewhat treatable with things such as cromolyn sodium or ketotifen. I am now convinced that for many with ME/CFS symptoms, MCAS is the culprit.

    By the way, tryptase released by mast cells is known to induce higher paracellular permeability (leaky gut).
     
  19. adreno

    adreno 3% neanderthal

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    Nanonug, I haven't read up much on MCAS. Are there any theories as to why the excessive mast cell degranulation occurs? Is it a membrane problem? Oxidative stress?
     
  20. nanonug

    nanonug Senior Member

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    My understanding, still very much evolving, is that it can be a ton of different things, including genetic screw ups.

    I watched the video below a few days ago and learned a few more things so you might find it interesting as well:

    Functional Proteomics and Genomics Analyses of Mast Cell Activation.
     

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