Comment on Anon gets /fit/
ryannathans@aussie.zone 5 months agoI 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. Gives me maad fatigue, lots of hintamine 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.
shreddy_scientist@lemmy.ml 5 months ago
While there’s no free floating IgE in your system, to degranulate mast cells need IgE bound to their surface. Thats the activation aspect. Since you need mast cells, it’s not exactly something you can turn off. Glad you know the triggers at least, gives you the opportunity to make moves accordingly!
ryannathans@aussie.zone 5 months ago
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?
shreddy_scientist@lemmy.ml 5 months ago
Well, in digging into some research papers, I found “mast cell activation can be caused by both IgE-mediated and non–IgE-mediated triggers”.
This is because there can be a mast cell mutation (KIT) which then doesn’t require IgE for activation. You have MMAS and not Mastocytosis, right? The mutation seems to be associated with Mastocytosis based on my understanding for the paper.
Since mast cells aren’t privileged, they’re restricted from entering sites like the brain and spinal cord. So, if they’re in the spinal cord, you almost certainly have bigger problems than mast cell activation I’d think, as the barrier isn’t doing it’s job.
In case you’re interested, here’s the paper on mast cell disorders: www.jacionline.org/article/…/fulltext
Here’s one on the brain and spinal cord: www.ncbi.nlm.nih.gov/pmc/articles/PMC3481533/
The BIGGEST issue with our understanding of the immune system today is that ALL testing is done on mice. The human body on a chip technology along with the digitization of the immune system together will be a monumental step. Thankfully, it’s literally something we’ll have in the near future. Once that’s available, we’ll have human specific data plus an onslaught of constant information, which we need to help folks with all of the immune system disorders. I’m an autoimmune patient and losing my friends and family to this uncertainty has led me into the field to try and help improve our understanding. There’s legit more we don’t know than we do know about the human immune system right now.
ryannathans@aussie.zone 5 months ago
Lots of SNPs in my KIT but no p.D816V
ryannathans@aussie.zone 5 months ago
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