One of the most frustrating aspects of mast cell disease is every patient has different triggers. The only way to learn is trial and error – it’s less like learning to ride a bike, and more like trying to run through a minefield. Oftentimes, success is measured by how many days in a row you’ve managed to stay out of the hospital.
Last week marked the two-year anniversary of my diagnosis. I’ve learned more about mast cells than most doctors, and yet, every day feels like a narrow escape. Even when I feel fully prepared and hyper vigilant, my mast cells surprise me – less like someone jumping out and shouting boo, and more like a coup d’état. My mast cells are ungrateful haters with a questionably dry sense of humor.
Here are the top four triggers that blindsided me this year:
#1. Eyeglasses
This year, I discovered my mast cells hate plastic – clamps of IVs tubes; the shell of my FitBit; hospital wristbands. While they are not life threatening reactions, the rashes are painful and unsightly. Now I’m reacting to the nose pads of my glasses, even though I’ve worn them for the last four year. Of course, I have contacts… but those are plastic too.
#2 Ureteral stent removal
Need I remind you of my most painful reaction of the year? Of my life? I’ve already covered this in detail, but in short, my mast cells revolted against my ureteral stent REMOVAL. While I had prepared for a reaction to the 8” plastic stent being shoved up my pee hole, my mast cells decided to protest four hours AFTER its removal. And now I’m a urology legend.
#3 Wall art
Leading up to my kidney surgery, I was feeling a bit down, so I ordered a large canvas painting of birch trees to enjoy while I recovered. When it arrived, I unpacked it from its box and leaned it against the wall to admire the vibrant colors. As if I was in the forest myself, the scent of pine filled my lungs and I broke out in hives. The frame was made of pine, my most severe IgE allergy.
#4 Pumpkin scone
Every fall for as long as I can remember, I have stuffed myself with pumpkin bread and pie. This is why it took me two weeks and three pumpkin scones to realize why I was losing my vision and passing out in my office. The specific culprit? Soy.
Did your mast cells pull a fast one on your this year? I’d be surprised if they didn’t. Share your story in the comments below.
New this year:
Strawberries: figured out AFTER I ate 2 plates of chocolate covered strawberries at a buffet and my tongue looked like someone took a meat tenderizer to it.
Smoke: cigarette smoke has always been a nuisance, but my mast cells decided that campfires with ANY foliage or moisture should close down my breathing. Did I mention I LOVE to camp and make s’mores? My neighbor also takes every chance they can to drive me inside on a nice day by starting a small brush fire just because. The DEC knows who I am and why I’m calling. My neighbor wants proof it is life threatening. Officer told her to take me to court, but not many 30 somethings are fully disabled and stay home like hermits.
Cucumbers: despite severe gastroparesis my stomach can isolate any amount of cucumber and torture me with GERD for days after. Pickles are still ok.
I won’t even get started on having a clotting disorder AND masto. Sometimes I don’t bleed at all and other times the bleeding won’t stop for hours. Yay for homemade heparin? 🤔😫😭😡🤬
Strawberries and smoke definitely are the death of me!
Having MCAS myself i usually just look at your Instagram but came to read your blog tonight! Just read about your clotting disorder. Any idea if that goes with mcas? I ask because I too can not bleed at all and next time I bleed like a fountain. Cucumbers are the devil….. but mines a full out reaction and strawberries I miss terribly but given they’re one of the higher histamine fruits I’m not shocked sadly. They have become one of my worst trigger foods along with tomato’s.
I think it was another person who commented on the clotting disorder. I use aspirin to inhibit prostaglandins, but I don’t have a clotting disorder. I know mast cell activation can affect blood in all sorts of ways, including increasing heparin level. Thanks for visiting my blog!
The scent of onions frying and the tap water at my mum’s house are two of the latest, the water was too heavily chlorinated.
I’ve learned baking is much more friendly for my lungs.
Yep, I’m a fan of using the oven.
It’s my first year. And oh man has it been weird. I’ve lost things, regained them, lost them again, and still can’t figure out what’s happening half of the time. The latest shocker was pears. I’ve eaten them my whole life, no problems. A couple weeks ago, a friend saved some aside from his tree especially for me and my sister. I ate a whole one (with skin) and had all sorts of fun (not) reactions.
Whee. Here we go on the crazy mast cell trigger investigative roller coaster again. Wahoo. 😉
I learned a lot (the hard way) about high histamine foods in my first year. It does get easier.
yay, thank goodness! Thanks for the encouragement!!
If you have histamine or salicylate intolerance, or a combination of the two that’s a pretty normal experience.
With a food intolerance it’s the frequency of eating the trigger food that can tip you over into a reaction, which is why you can eat it once and be fine but the next time you eat it you’re not fine.
With a true food allergy the reaction is replicable every single time you consume even the smallest amount of the trigger food.