Food Fear is Real

Food fear is real.

There is nothing quite like being a foodie, the obsessed, travel-to-the-ends-of-the-earth-for-one-great-meal type of foodie, only to be hit with MCAS, Mast Cell Activation Syndrome. In a simple phrase: it sucks.

Mast cells are your immune system’s smoke detectors. We need them to do their job. They sit in the tissue that touches the outside world: skin, gut, sinuses, lungs. When they detect a real threat, they burst open and release a cascade of mediators that calls in the rest of the immune system. Histamine is the most famous chemical in that cascade, but there are hundreds.

MCAS is what happens when those detectors stop discriminating. Mast cells are supposed to fire at real invaders. In MCAS they fire at dinner. Which is why a plate of aged cheese can read like anaphylaxis.

I remember dining at Tom Kitchin’s fantastic The Kitchin in Leith, Edinburgh. I had dined there a week earlier and decided to return one more time before I left the area. This time I opted in for the cheese course. I had no reactions at all the last few times I dined there. I adored the iconic hand-dived Orkney scallops baked in the shell, which tasted sweet and gently salty, so very fresh from the sea. I ate to my heart’s content and my full belly’s disgruntlement. But the cheese course got me. As I sat at the lovely window table, something began to shift. As I left to walk back to my flat I felt a real heaviness coming on, the cobbled path uneven and sloping, precarious in an unusual way. As I walked along the canal actually the Water Of Leith river, in the (rare) sunlight, past the swans with their eight furry cygnets scooting behind them, I didn’t stop as I usually did. A visit to them was a daily ritual, but today I was dropping into something, something that gave me tunnel vision to return to my nest. I couldn’t enjoy my walk or the place that I so love. It was difficult climbing the stairs to my fourth floor apartment, a rooftop I shared with the boisterous seagulls. I felt thick, like I was wading through mud. I was anxious and felt compelled to lie down. I did, and slept for three hours, only to awaken craving Pellegrino and something sweet. The typical aftermath. I went down to the nearest pub for a liter of the bubbly elixir that rights my ship.

Others get skin reactions, throat closures, headaches, brain fog, pain. It can be very serious in a variety of ways. I had experienced something similar after a Thanksgiving meal and a Christmas banquet, but this was the first time it hit that hard, and the first time it happened somewhere I couldn’t retreat from quickly.

Over time, with each new assault on my system, living in mold, that pesky virus, living in mold again, and an antibiotic called Cephalexin were the big final straw. Nearly anything I ate or ingested as a supplement caused a crash daily. I became determined to figure this out and help others too. But for a time, food was terrifying.

Blueberries blended with heavy cream became my safe sanity food when MCAS limited what I could eat to chicken, rice, butter, and olive oil. That addition to my safe list became part of my mental health medicine.

Food fear is real and it is AWFUL. I remember a night, after I’d had a bad run with severe reactions and had not ventured off the safe list for quite some time, I attempted to feel like a normal girl and went out for dinner with a friend. As I stood at the counter looking at options, reviewing the ingredients for each choice, I became overwhelmed and started to have an anxiety attack. Tears welled up in my eyes. I apologized to the gal behind the counter and my friend over and over for being difficult and “ruining” the evening.

Thank goodness I was with a wonderful friend who held the space, didn’t get upset, and tried to think of alternatives including a raincheck.

Ultimately, as I calmed, we went elsewhere and I ate something quite clean, after torturing our server with a million questions for which she so politely found the answers.

I am finding some patience for my needs out in the dining world, which makes getting back out there more inviting and safer. But it feels terrible, I’m sure it is annoying.

Thank you to all of the people who hold space for food sensitivities, for the dangers of MCAS, for the complexity of navigating this strange and vulnerable situation we deal with. I couldn’t do this without the support of these people, a few friends who may not get it but don’t hold it against me or judge it, and a community of others navigating this.

P.S. I can't wait to return to The Kitchin. It's one of the few restaurants I go back to again and again, and have since 2012. I live in the US. It is that worth it. None of this is a knock on The Kitchin. My mast cells simply had opinions about aged cheese that night. I'll be armed with my MCAS kit should things rear up, but I'm fairly certain it's under control now.