As a child, I was a notoriously picky eater, but I didn’t pick the foods you typically would expect a child to like. According to my mom, I inhaled salad and carrots and watermelon as if it was the last time I’d ever eat them. Maybe some part of me knew that one day it really would be the last time.
As I aged my “picky” eating turned into no eating. First manifesting as severe abdominal pain, bloating, nausea, and constipation. I was in and out of the hospital and diagnosed with EDS, which eventually led to me being diagnosed with Gastroparesis by one of the leading GI doctors in that field of diagnosis. But I didn’t respond to the usual treatments. I had severe adverse reactions to the usual medications used, and my testing wasn’t severe enough to explain the extent of my symptoms. So we landed back at the beginning, waiting for my body to point us in the right direction.
Eating continued to be a daily struggle and eventually it turned into rashes, then sneezing, then facial swelling, and fevers. I noticed certain foods would make my pain worse, and that strong smells made it difficult for me to breathe. Finally, a doctor decided, on a hunch, to test my Tryptase levels, a marker for some rare condition he was certain I didn’t have. It came back elevated. The first patient he had ever seen with that result.
Mast cell disease. I had never heard of this condition but I was suddenly thrust into a world of anaphylaxis, epipens, IV medications, and lots of testing. I went from eating anything I could tolerate, to a dwindling list of “safe” foods I had to carefully prepare myself, at home, from scratch. I was put on so many antihistamines that I stopped producing sweat, my mouth turned dry, and I was still just as sick. Then one day I ate a safe food and I went into anaphylaxis, and it happened again the next day and the next. Every time I ate, I had to use an epipen. This never stopped.
My official diagnosis is Mast cell activation syndrome and systemic Mastocytosis. Two big names that basically mean the cells in my body responsible for allergies are both easily triggered and being produced too much. From a practical stand point this means that I have a lot of allergic reactions, even to things I may not have been allergic to in the past. These episodes can be life-threatening anaphylaxis and there is no predicting when or if I have developed a reaction to something safe. Because I also have Mastocytosis I am at a higher risk of my reactions being life threatening and severe. It can also cause a lot of bone pain, because the bone marrow is where the mast cells are being overproduced.
Within the past two years my mast cell disease slowly got worse, it was lurking in my body while we were trying to figure out why I had so much stomach discomfort. Now, I can’t eat anything, not even water without having an anaphylactic reaction. I am Tube Fed into my small intestine via a formula mixture that is so broken down the body is supposed to not be able to react to it, but I still have anaphylaxis to my formula and we have to alternate it regularly.
Not everybody with mast cell disease is as severe as I am. Many people live their lives with it and don’t even know they have it. For some it can present with random hives, rashes, or fevers that all go away eventually. For others it can mean a life time on TPN or a constant infusion of IV Benadryl. There is little known about these diseases as they are on the edge of medical understanding right now. The best thing we can do, as a community, to support people with MCD is spend time understanding how to make public spaces safe for them, with minimal perfumes, food smells, and cleaners. Any of these things can trigger anaphylaxis.
For patients like me, we often avoid social situations because most places just simply aren’t safe for us. It can be tiring trying to explain to people that I really can’t go to a restaurant or be near them if they’ve just showered with something fragrant, but this is my reality. It’s taken me a long time to come to terms with this. To accept that my body just simply can’t tolerate things I could before, and to properly stand up for myself to stay safe.
Hopefully one day there will be a treatment that works, and I can eat that watermelon again. Until then, I will advocate for others like me, because we deserve to have safe spaces too.