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).
mast cell disease
Possibly because of the mast cell disease, I have had a Vitamin D deficiency on and off for many years. Per the latest blood work it’s really low right now, which may be why I have been having muscular weakness, bone pain, and difficulties concentrating. This list of symptoms of Vitamin D deficiency comes from this healthline.com page.
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’m pretty new to learning that I probably have Mast Cell Activation Disease (MCAD) — also known as Mast Cell Activation Syndrome (MCAS) — and as I am learning more about it, I have been wondering, what is the difference between MCAS/MCAD and histamine intolerance? Here’s what I know so far.
TIL that Season 8, Episode 1 of “House” is about mast cell disease. I found that tidbit in a great little book titled, My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders.
Wow, the first available appointment for the leading doctor on this disease is in February ... 2018.
NURSE (on the phone): Is Wednesday the 14th good for you?
ME: Well, that’s Valentine’s Day, I like to keep that open. Do you have something available on the 15th?
NURSE: I completely understand. Let’s find something on the 15th...
If you need to find a doctor who specializes in mast cell activation disease, I currently know of two lists of mast cell disease doctors:
As I’ve learned in the last two months, most doctors don’t know what mastocytosis or mast cell activation disease is.
I learned that the hard way, with over fifteen ER visits in the last three years, and having seen not only my primary care physician (“I wouldn’t know what to test for”), two endocrinologists, an allergist, a hematologist, three gastrointestinal specialists (one with a focus on the liver), and others I can’t remember, in addition to all of the ER doctors.