mast cell disease

Feeling like I have been drugged

When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.

For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.

This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.

Ratio of women to men who have mast cell diseases

From what I can tell by the interactions on the The Mastocytosis Society group on Facebook, there is at least a 10:1 or 20:1 ratio of women to men who have mast cell diseases. Or, more accurately, those are the ratios of people who (a) know they have mast cell diseases and (b) interact in this group on Facebook.

MCAS/MCAD skin reaction

My immune system has been struggling the last two weeks since I had some bad Kroger yogurt. (The yogurt didn’t taste bad, but I got very sick within an hour of eating it.) Today I put a mala on my wrist like I have 10-15 times this year, and after a little while it felt like it was itching and burning. This is what my skin looked like almost half an hour after I took it off. I’m assuming that this is a result of the mast cell disease (MCAS).

Natural mast cell stabilizers

Per this article on healinghistamine.com, some natural mast cell stabilizers are: Khellin; Quercetin; Epigallocatechin gallate (a green tea compound); Silibinin (from milk thistle); Ellagic acid; Reservatrol; Curcumin; Garcinia mangostana (mangosteen).

The author further states, “Also in the bioflavonoid family are luteolin and apigenin, the latter of which can be found in parsley, celery, rosemary, oregano, thyme, basil, coriander and artichokes.”

“Rare disease makes woman allergic to everything, including her husband”

From a today.com story about a woman who has a more severe form of the illness/disease I have:

“Johanna Watkins, 30, is allergic to almost everything and everyone, including her husband Scott, 29. She’s been diagnosed with mast cell activation syndrome, a rare and progressive immunological condition.”

“She has a list of 15 foods she can eat and that’s it. Even those foods make her feel ill, it’s just that they don’t kill her. She’s eaten the same two meals for two years.”

(The image is from the today.com story.)

Is that person winking at me?

If it seems like someone is winking at you, a) they might be, it’s Valentine’s week, or, b) they may have a condition known as blepharospasm, which is a symptom of MCAS. My right eye started doing this 10-15 years ago, long before I knew anything about MCAS.

(Turns out there are ~5,000 mast cells per cubic mm of conjunctival tissue, i.e., the inside of the eyelids.)