If you or someone you know has a mast cell disease — a type of autoimmune disease — the tmsforacure.com website has several great infographics. I printed them out so I can take them to new doctors who don’t know me, when I have to go to emergency departments, and for things like my upcoming surgery.
In what will hopefully be my last health-related post for a long time ... after seeing 11 specialists and making about 15 ER trips, I think that I/we finally have a good idea of what is happening.
Just like finding a bug in software, once you figure out what’s going on it explains everything, including the passing out, the raccoon eyes, getting sicker when eating ‘healthier’ food, feeling like bones spontaneously break, bad reactions to the statin medication and the last MRI contrast dye, the fake heart attack, everything.
And finally, it’s time for a nice, long party. :) I started celebrating today by going up to RMNP, where it snowed for me.
This nih.gov article states that Vitamin D helps to stabilize mast cells. I always thought my Vitamin D levels were very low because of mast cell disease, but maybe something else caused the Vitamin D problem which made the mast cell problem worse, dunno.
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.
Lisa Klimas at MastAttack.org has a nice mast cell disease fact sheet, including the information on the image shown.
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.”
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.)
I went of my diet a little last night by eating some mozzarella cheese and half a beer, and this morning I woke up extremely itchy with several bumps. That’s how I roll with my version of MCAS.
I haven’t been feeling well the last few days, and this afternoon when I had the chills I decided to have a cup of tea to warm me up. I recently bought some new tea, so I thought I’d give it a try. A short while later I got itchy and started breaking out in hives. All of that is how life with mast cell activation syndrome (MCAS) goes.
In a mostly-unrelated note, here’s a link to a July, 2016 research article titled, Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease.