Why Does Everything I Love Try to Kill Me Now

On MCAS, food intolerances, the expanding list of things that cause reactions — and the real grief underneath the semi-serious rant.

It started with gluten. Fine. I adjusted. I was philosophical about it. Bread is just bread. You get over bread.

Then dairy. Still fine. The world has oat milk now. I adapted with dignity.

Then eggs. At this point I had a brief, private argument with my immune system, which I lost.

Then tomatoes. Then red wine. (The red wine one was personal.) Then histamine — not a specific food, but a biological compound that lives in approximately eighty percent of the foods I had previously considered good and normal, including everything fermented, everything aged, everything that had been near something that was once alive for longer than an hour. My MCAS, which stands for Mast Cell Activation Syndrome and which means my immune system treats ordinary stimuli like catastrophic threats, had decided to expand its jurisdiction.

The list is long now. I won't enumerate it fully. You're reading this, not auditing my pantry. But the experience of cooking for myself — which used to involve making real food with actual ingredients that had flavor and cultural significance — now involves a kind of pre-emptive grief before I begin, a consultation with the running mental list of what is currently tolerated, and an awareness that the list will probably be different in three months.

Here is the semi-serious part: I have made peace with the food situation. Mostly. There are workarounds. There are genuinely edible things I can eat. My wife Theresa has become, out of love and necessity, extremely fluent in what is safe, and this is the kind of intimacy no one writes greeting cards about but which I find more meaningful than most of the things greeting cards cover.

Here is the actual thing underneath the semi-serious part.

Food is not just nutrition. It is not a delivery mechanism for macros. Food is the thing you eat at celebrations. It is the dinner your grandmother made. It is the specific meal you had at a specific moment in your life that is now permanently associated with that moment. It is the social currency of being human with other humans, the way connection happens around tables, the way belonging is performed through eating together.

When the list of things you can eat becomes small enough, you stop eating with other people in the easy way. You become the person with restrictions. The person who has to ask seven questions about a menu. The person who, at a conference lunch, is eating plain rice while everyone else has the thing they ordered. This is not tragic. But it is, quietly and persistently, a form of exclusion — not malicious, not anyone's fault, but real.

MCAS is one of those conditions that medicine is still mapping. For a long time, patients with mast cell problems were told they were anxious, or sensitive, or difficult. The pattern of symptoms — reactions to seemingly random stimuli, reactions that varied day to day, reactions that didn't fit any obvious allergy profile — looked to many clinicians like psychosomatic presentation. It was not. It was a mast cell problem. The mast cells were real. The reactions were real. The patients were right.

(I keep saying this sentence in different contexts because it keeps being necessary: the patients were right.)

The expanding list of intolerances is not me becoming more fragile. It is my immune system doing the thing it does, which is react to things that other immune systems pass over without noticing. This is a functional problem, not a character problem. I mention this because I spent years treating it as the latter, which helped exactly nothing.

What helps: knowing what's safe and eating it without making it into a referendum on my limitations. Good olive oil. Good salt. The specific vegetables that have been shown the door by histamine but weren't my favorites anyway. And, occasionally, carefully, something from the old list that still works on this particular day, which feels like finding a twenty-euro note in an old jacket pocket — small, genuine, and gone too fast.

The grief is real and also not the whole story. Both things. Always both.

Originally published on Substack. Republished here as part of the written tradition behind [The Honest Room](/workshops) and the methodology of [Testimony-Based Presence](/methodology).

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