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 activation disease
iamast.com offers these “Six rules of mast cells” on their beginners/terms page.
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.
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.
“Mast cell disorders are neoplastic disorders, which means the mast cells multiply continuously over the patient’s lifetime. As with cancer cells, mast cells do not die, disappear, or cease to function, on their own.”
When I began reading the book, Never Bet Against Occam, I told my doctors that it was like reading my biography. At the very least it read like the biography of my last few years and hundreds of thousands of dollars in medical expenses, trying to find out why I kept getting very sick and passing out, and why my lab results were jumping around like a rabbit, first showing signs of one illness and then another.
I just noticed that another reviewer wrote, “The book was like a romance novel that I could not put down!” I won’t call it a romance novel, but I know that once I started reading it, I didn’t put it down either. I was smiling at the stories I related to, and also wondered, “Why don’t my doctors know about mastocytosis and mast cell activation disease?”
For more information, here’s a link to Never Bet Against Occam on Amazon.com.
This image is another good answer to the question, “What are mast cells?” The image comes from this selfhacked.com page.
I don’t always get sick, but when I do ... it’s nice to find other people who are going through what I’ve been going through, and they still have a sense of humor about it. If you have a Pinterest account, this “My Mastocytosis” page is great.