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?
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 from 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.
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.
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
Good on you for being so knowledgeable about the disorder. But 100% ask your doc, being real with my doc has taken our appointments to the next level. The genome is only half of the IgE allergy response, other half is the environment you were raised in as you can build tolerance of it. A high genetic aspect can be countered by a “low hygienic” environment according to research.
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?
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 from 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: https://www.jacionline.org/article/S0091-6749(17)31025-4/fulltext
Here’s one on the brain and spinal cord: https://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.
Lots of SNPs in my KIT but no p.D816V
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
Good on you for being so knowledgeable about the disorder. But 100% ask your doc, being real with my doc has taken our appointments to the next level. The genome is only half of the IgE allergy response, other half is the environment you were raised in as you can build tolerance of it. A high genetic aspect can be countered by a “low hygienic” environment according to research.