“You have cancer” (a Thanksgiving-ish story)

A few people I’ve talked to recently who have (or had) cancer told me they can clearly remember the moment when their doctor told them that they had cancer.

In my case I do remember the conversation with the doctor, but that was more of a formality. When I picked up the phone to talk to her, I already had a pad of paper and a pencil in hand, and I was ready to write down the details she was going to tell me. Because in my case I was pretty certain that I had cancer when I saw the ultrasound results a few days earlier.

MCAS/MCAD: What an activated mast cell looks like

At some point somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”

The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.

That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.

(Image from this nih.org research paper.)

MCAS treatment

A few notes from the article I linked to:

This post discusses medications used to treat MCAS. Doses listed are taken directly from “Presentation, diagnosis and management of mast cell activation syndrome” by Lawrence B. Afrin. These doses are general recommendations. Medication should always be taken under the direction of a provider who knows you and your case personally.

Extra fatigue can cause a histamine release (MCAS/MCAD)

Presumably as a result of the MCAS I always feel sick (groggy with flu-like symptoms) when I don’t get enough rest, and I just read this comment from a nurse on the Mastocytosis Society page on Facebook: “Extra fatigue can cause a histamine release.” That seems to confirm what I have been feeling.

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.”

Mast cell disease, histamine intolerance diet, and a healthy weight

One good thing about mast cell disease: because I’ve had to follow a strict low-histamine diet I’ve lost almost twenty pounds in the last eighteen months, with most of that coming in the last six months. I’ll soon weigh what I weighed in high school (albeit it without the same muscle mass). This is a photo of my during my first year in college, where I was at roughly the same weight.

If you’re interested in a similar story, you can find before and after photos of the “Low Histamine Chef” (Yasmina Ykelenstam) at this link. For me the important thing is not getting down to a low weight, but a healthy, sustainable weight where I feel good.

Breaking out in hives after a cup of tea

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.