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Where are mast cells mostly concentrated?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by ebethc, Apr 3, 2017.

  1. ebethc

    ebethc Senior Member

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    i know that mast cells are throughout your body, but are they concentrated in gut & sinuses?

    My "allergies" are completely out of control... my eyes feel like they're going to fall out of my head, my brain fog is terrible, my sinuses, threat and lungs feel swollen and itchy

    I say "allergies" because it's allergy season, and my histamine symptoms are way worse.. however, I've had extensive allergy testing done (both blood and scratch) and it came up negative.... I tested high for tryptase, so it must be mast cells, right? Is it possible to have massive allergies and test negative because your immune system is too lame to make antibodies? Has anyone ever heard of this?
     
  2. halcyon

    halcyon Senior Member

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    As you said, I believe they are throughout, but definitely concentrate in areas that are exposed to the world, so skin and mucosal surfaces (lungs, gut, etc).

    Mast cells are usually activated by IgE antibodies, but in MCAS they are able to activate and degranulate without IgE activation I believe, so in a way I think the answer is yes.
     
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  3. kangaSue

    kangaSue Senior Member

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    I think the GI tract produces the largest amount of mast cells so if you have GI issues too, suspect that as the source if allergy testing is negative.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

    Look into ketotifen as a powerful mast cell stabilizer and anti-allergy med. Usually the domain of compounding pharmacies to supply it.
     
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  4. ryan31337

    ryan31337 Senior Member

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    Has this been looked into by someone that understands mastocytosis/mast cell activation?

    Anecdotally it doesn't seem that common for MCAS patients to show elevated tryptase, though perhaps because samples are taken at the 'wrong' time. Constant elevated readings I gather point more towards mastocytosis. Were you reacting when the sample was taken?
     
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  5. ebethc

    ebethc Senior Member

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    Nope. I'm going to a rheumatologist in a couple of weeks and I'm going to try to get more tests for MCAS... I have TERRIBLE insurance but it's better than nothing so I have to take what I can get...

    I went to an immunologist/ allergist a few years ago when I had the best insurance... everything was covered.., I didn't know about MCAS then and it wasn't in her playbook... it makes me mad.. I am having a really terrible time w allergies more than ever right now & she told me that I didn't even have allergies because I didn't have an IgE reaction in blood or scratch tests... she told me "oh you're just one of those ppl who always has something wrong w them" I am so exhausted & allergic right now and I can't think because my brain fog is worse than ever...

    I've heard that ketotifen is good but I can't take anything that makes me gain any more weight! I don't have the energy to exercise... I don't know what else to do... is there a ketotifen sinus spray? Maybe that wouldn't do any harm..
     
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  6. kangaSue

    kangaSue Senior Member

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    Ketotifen can be compounded as capsules, oral suspension or nasal spray.
     
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  7. ebethc

    ebethc Senior Member

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    Nasal spray sounds good! I wonder if a nasal spray mast cell inhibitor would help w brain fog??

    Has ketotifen helped your brain fog? What form did you take?
     
  8. kangaSue

    kangaSue Senior Member

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    I don't have brain fog but if I did, I would look into Insulin nasal spray.
    http://www.lostfalco.com/intranasal-insulin/

    I have chronic GI dysfunction and was trying ketotifen for GI tract mast cell activation. I had it as an oral suspension as I have a feeding tube and wanted to see if bypassing the stomach was a better delivery route and it also makes it easier to alter the dose.

    It didn't work out unfortunately, everything upsets my gut no matter which route I take.
     
  9. ebethc

    ebethc Senior Member

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    @kangaSue sorry to hear about the tube... that's really rough

    I have have GI problems, but they're ranked behind the brain fog and fatigue because those are the things that prevent me from working

    Yes thank God for the legendary lostfalco! I'm trying INI and ibudilast next (in that order). It just a matter of money or I would have tried them already
     
  10. kangaSue

    kangaSue Senior Member

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    Ah yes, money, the great leveller. It's a sad indictment of one's health when your first dream for a big Lotto win is to try and buy some good health.
     
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  11. ryan31337

    ryan31337 Senior Member

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    Hi @ebethc,

    With elevated tryptase you should have the attention of someone that understands mastocytosis, which is a much more accepted & diagnosable condition than MCAS. If you have signs/symptoms of masto I would guess a bone marrow biopsy would come next.

    If it were me I would hold off on any treatment options until the investigations are done as some results can be affected. If you are desperate for relief you could ask a doctor to try anti-histamines like fexofenadine or cetirizine. Some people find the anti-leukotriene montelukast helpful. Also the mast cell stabilisers ketotifen and sodium cromoglicate (this one isn't absorbed in blood so needs to be directed as eye drops, cream, tablets etc.). Chances are if you are negative for mastocytosis but there is suspicion of MCAS you will be put on these drugs as a trial anyway.

    Ryan
     
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  12. justy

    justy Donate Advocate Demonstrate

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    I agree totally with Ryan, an elevated Tryptase can be a flag for Mastocytosis so you should be properly looked at for this. Lots of good mast cell groups on Facebook that can point you in the right direction.

    With MCAS or Mastocytosis skin prick testing can be either all negative, or as in the case of dermographatism (sp?) all positive (including histamine and the control in my case). It doesn't mean your immune system is too lame ot mount a response but just that its not IGE mediated allergies, but rather mast cell degranulation (or in the case of Mastocytosis proliferation) going on. This means you could have classis severe allergy presentation with no IGE allergies present.
     
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  13. ebethc

    ebethc Senior Member

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    @justy @ryan31337

    I don't have the skin problems associated w masticytosis, though

    I feel "allergic" all the time ..wheezing, chronic sinus & throat swelling, brain fog, itchy eyes, fatigue, aches, joint pain ... I've tried everything.. quercetin is the only thing that helps, but it's not enough... I like montelukast, but it's not enough, either...

    Does that sound like mastocytosis? Can a rheumatologist help? I'm going to a rheumatologist this month... I have terrible insurance and can't pick my own doctors so hopefully they can help

    @justy I was wondering if it's all caused by MCs and that's why no IgE

    Thanks
     
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  14. ryan31337

    ryan31337 Senior Member

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    Hi @ebethc,

    Skin manifestations are not required for certain types of masto.

    I'm afraid you're going to need someone with a special interest & experience in masto/mcas to get to the bottom of it - perhaps if the rheumy is understanding they can recommend an expert?

    Good luck,
    Ryan
     
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  15. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    @ebethc, I agree with the posters that say the high tryptase needs to be investigated. I think someone can have systemic mastocytosis without the presence of any skin symptoms.

    Are you currently taking any NSAIDS? (I saw you mention them in another thread.)

    Some substances like aspirin, sulfites, and chlorinated drinking water can cause "allergic" symptoms that aren't IgE mediated.

    Also, there used to be a sodium cromoglycate based nasal spray but not sure if it's still available.
     
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  16. justy

    justy Donate Advocate Demonstrate

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    @ebethc - yes it could all be caused by mastc cells and Ryan is right you need a Dr with an interest in/knowledge of mast cell disease, not just Mastocytosis but MCAS. Mastocytosis should be ruled out with a bone marrow biopsy if you have high Tryptase. If the BMB is negative for mast cells - then it shouldn't be heard to diagnose you with MCAS based on the high Tryptase.

    Your symptoms plus high Tryptase plus positive reaction to Quercetin all point to a mast cell disease. Quercetin is a natural mast cell stabiliser. Vitamin C is also so you could add that, also low histamine diet. Have you tried OTC histamines? many of us with mast cell disease take them daily at at least twice the normal dose. Mast cell patients can be difficult to treat and need to find the right combo of drugs/supplements etc that will help.
     
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  17. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Forgot to add that I think this is a disgusting thing to say to a patient. Have had similar experiences myself, so you have my sympathy.
     
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  18. ebethc

    ebethc Senior Member

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    I have some sodium cromoglycate ampules that I put in my Neti pot... seems to help w sinus inflammation (they were meant for ingestion but I couldn't tolerate them and put them aside)

    Re water... funny you mention that .. I ran out of bottled water for one day and drank tap water and REALLY noticed how much the chemicals bothered me!!

    I have been taking Celebrex , which I like but don't want to take every day because NSAIDS are bad for stomach, although I think Celebrex is supposed to be better

    Next up:

    1. INI intranasal insulin for brain fog
    2. Ibudilast for calming microglia , inflammation

    Are either of these good for calming mast cells??
     
  19. ebethc

    ebethc Senior Member

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    Interesting. ... antihistamines don't work but I'll try increasing the dose... antihistamines scare me because they're associated w Alzheimer's!!

    I just took 2 levocetirizone "zyzal" plus an Allegra! I feel mildly better... how much above the normal dose do mast cell patients go??

    So, if tryptase AND BMB = positive, then mastocytosis

    If tryptase = positive but BMB = negative, then MCAS

    Correct?
     
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  20. ebethc

    ebethc Senior Member

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    Do doctors believed in mast cell disorders? I don't know if it would have helped to ask her about this...I didn't know about it at the time
     

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