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Anon gets /fit/
  • Facinating, I think non-IgE lines up more with my experience. I believe I have MCAS but doctors don't really do much testing. I have my full genome sequenced at 100x coverage so I'll check for the mutation mentioned today! Plus any others if you have suggestions

  • Anon gets /fit/
  • They always need IgE to activate? How does this work for triggers that have no antigen, e.g. vibrations? Is there any way to identify what the mast cell bound IgE are reacting/binding to?

    I understand that there are cases where spinal decompression surgery has cured mast cell activation syndrome. It seems to be related to spinal compression in some cases including mine. Any idea how that could possibly be tying in?

  • Anon gets /fit/
  • I don't have asthma. I don't even think I have any IgE involvement. My total IgE tests at low/normal levels, I don't seem to have eosinophil involvement that I am aware of. I haven't even had anaphylaxis before. Though my mast cells constantly degranulate in response to histamine liberators like pepper, chilli, tomato, mustard or triggers like vibrations (shower water on my skin or electric toothbrush), or like laundry scents or perfumes or quick temperature fluctuations or stress or lack of sleep. Gives me maad fatigue, lots of histamine release, blood thinning, etc. Have to avoid triggers and take a bunch of things I found that stabilise mast cells and then I feel good. I have mutations in my methylation and metabolism genes which drains my (acetyl)choline too so probably related somehow.

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    ryannathans @aussie.zone
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