When you have a rare genetic mutation (I prefer the term “posthuman”), doctors like to give you orange jugs.
mast cell activation syndrome
Writing as someone who likely has Mast Cell Activation Syndrome (MCAS) and who has also looked into histamine intolerance, it was surprising to see the headlines in this image being “news” in 2016. MCAS was officially designated as a disease in 2007, and for anyone who knows about it, there’s nothing new about this. Cured foods are well known to be a trigger for people with mast cell issues, meaning that eating cured foods is known to trigger mast cells to release histamine (i.e., to degranulate).
iamast.com offers these “Six rules of mast cells” on their beginners/terms page.
Presumably because my immune system is weakened, my tongue turned green this week. Here’s a self-portrait.
This “What’s in a mast cell?” slide by Tiffany Blackden implies that mast cells contain over 100 different molecules that a) protect the body, but b) also cause inflammation.
I was just looking to see if there are any mast cell disease “support groups” in Colorado, and sadly, this image from meetup.com is a good summary of what I found.
This is a good quote from Dr. Afrin, from this MeAndMyMastCells.com page about diagnosing mast cell activation disease (MCAS, MCAD), which explains why it has taken this long to get close to a diagnosis of my illness. Regular everyday doctors, even the hematologist I saw last week, may know about mastocytosis, but they don’t know about mast cell activation disease.
“Mast cells tend to hang out at the body’s environmental interfaces (to best serve their defensive role).”
That’s a short but very important quote from the book, Never Bet Against Occam: Mast Cell Activation Disease and Chronic Illness.
Do you have dry, itchy, gritty eyes? Ever have a dry cough, where it feels like no matter how much or how hard you cough, you can’t get rid of the itchy feeling in your throat? Or how about itchy skin? All of these are your body’s “environmental interfaces,” where mast cells are trying to protect your body. (These are also symptoms of mast cell activation disease.)
Doctors have a good theory on why my body is throwing
GoUnconscious exceptions. Debugging starts tomorrow. Hope to be writing again soon. :)