mast cell disease

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.)

Allergic angina (Kounis Syndrome) in mast cell disease patients

Everyone tells me that the cardiologist I see is the best heart doctor in this area, so on Thursday we were talking and I was telling him about mast cell disease, and said, “So that fake heart attack I had last May may have been allergic angina, you know, Kounis Syndrome. If we had known about MCAS at that time I might not have needed that angiogram, yada yada yada.” Then he said, “Wait, what was the name of that disease?”

At first I was upset that he didn’t know what this was, but then I realized how rare mast cell disease is. (This is the same doctor who knew what a Pheochromocytoma is, and told me to get to the Mayo Clinic.)

The good news is that I was able to give him all of the information I have on mast cell disease and Kounis Syndrome, so hopefully in the future he can try giving patients who present unusually some Benadryl and see if that helps. (I started to write, “Give them Benadryl instead of an angiogram,” but the stress test showed a possible dead spot in my heart, so I was getting that angiogram one way or another.)

(This image comes from the book, Never Bet Against Occam: Mast Cell Activation Disease.)

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.

Good to have my brain back after treating MCAS

When I was sick last summer I couldn’t even come close to thinking about a Map while programming. Feeling much better these days after radically altering my diet, I have used many maps over the last two days to solve programming problems elegantly:

Map<Tuple<Position,RatingType>, Spinner> positionRatingSpinnerMap = new HashMap<>();

That code gives me an easy way to lookup an Android Spinner widget based on a football player’s position (QB) and rating type (short passer, long passer, runner).

I have to say, it feels good to have my brain back.

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.

Cured meats bad for asthma

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).