CONTENT NOTE: unintentional and drastic weight loss (due to health issues), medical food restriction (not dieting), brief mention of self-harm (cutting)
Summer in North Carolina is hot and sticky. So there was nothing unusual about that Tuesday, unless you count that I was splotchy, nude, and crying in front of a fan. As far as my husband and I knew, the heat was just really getting to me that year. But when I ate leftover chicken casserole and wanted to skin myself alive, we figured out that it wasn’t just the heat—it was my insides.
The journey to an MCAS (mast cell activation syndrome) diagnosis was swift for me, which makes me extremely lucky. The journey to finding out what I can eat and be around? Now that I’m still enduring—a decade later.
MCAS is a condition that causes people to experience allergy symptoms in many forms. Foods high in histamine and certain environmental factors tend to be the culprit, though the cause of MCAS is not so simple. (Read: a topic for a doctor or scientist, not me.) There is a blueprint diet that can lower the risk of flare-ups. It’s called the Low Histamine Diet.
This would be a pretty short story if I said I followed it and felt better as a result. So, spoiler alert, that didn’t happen.
As heat was an intolerable trigger for me, it (among other things) prompted a move across the country to the Pacific Northwest. By the time my husband and I first settled into our little box apartment in Portland, I was feeling better. It was February, so nice and cold.
Though I didn’t understand the condition, I started working within its rules as I learned them. I avoided refrigerated meats due to the histamines that grow on them. I stopped eating leftovers that hadn’t been frozen for the same reasons and cut out some of the biggest known triggers—tomatoes (devastating), along with the other nightshades, and vinegar.
Even so, I was losing weight. There was also a constant, deep, fire-ant-crawling-under-my-skin itch that I couldn’t escape. It didn’t matter how much I clawed at my skin or how many Benadryl pills I took.
So I changed my diet completely: low histamine foods only. We didn’t go out to eat or accept food from friends. It was just a clean counter and approved foods. Still, I was miserable. Something was wrong.
I started keeping a food journal. With every entry I wrote, I cried.
I once had a beautiful relationship with food. I’d eat whatever I wanted: packaged cookies, sauces of unknown origin on processed meat and seafood, chips coated in speckled seasoning. I could try new cuisines at every opportunity. But, as I wrote an entry about my half mug of oatmeal and five grapes, I felt like eating was akin to the years I used to cut myself. It trapped me back in the space where I was without help.
I saw many allergists during my food journal months. The tests came back with confusing results that lead to shrugging and referrals. Eventually, I took control. I don’t recommend doing this, mind you. But it was what I did. I paid the price, but what’s done is done.
One-by-one, I’d stop eating a specific food item that I thought might be the cause of my problem. This is called an elimination diet. I was taking shots in the dark, hoping I’d hit something.
During this time, I lost a lot of weight. In about eight months, I went from 121 pounds to 89 pounds. I’d been the same weight since I was thirteen, so any weight fluctuation was a cause for note, at the very least. But this was a drastic change.
You could see my collarbone. My fingers were just skin wrapped around phalanges, my knees were knobby, and I had a thigh gap you could put a soda can between.
I was skin and bones.
Genuine worry from family and friends brought me shame. I must be disgusting if they can’t go 10 minutes without asking me if I’m okay, if I’m sure I’m eating enough to live. I wasn’t okay, of course. Everything I ate made me sick, and only my husband fully understood to what degree. But I was eating enough to function, to move, to laugh and smile and fake not feeling so horrible.
Have I talked to the doctor? Yes. They were slightly concerned, but my joints weren’t dislocating as much, so they just wanted to watch me. Am I dying? No. Am I sure it isn’t cancer of [insert some part they Googled recently]? I didn’t want to dignify that with an answer.
They sent me articles about foods good for gaining weight. My relationship with food plummeted. My relationship with myself became toxic.
I reduced my diet to chicken and broth alone. Both were on my Safe Foods To Eat list. So for a while, I didn’t get sick when I ate. My husband worried silently, but he understood and supported me (with my promise that I wouldn’t do it for long). After two weeks of just chicken and broth, I began adding foods back in.
This was a rough road, one that saw me in bed for days or weeks at a time.
I remember the day that I cried, “I can’t even eat pasta. What will I eat if I can’t eat pasta?” Rice had been taken from me a few weeks prior. My husband just held me, because what could he say to that?
A year later, my diet was still extremely limited, but I could eat about twenty foods safely. However, while I’d gained back two pounds, my self-esteem and relationship with food hadn’t improved.
The low histamine food list was crap, as far as I was concerned. I could eat legumes, drink black tea, and crunch on banana chips, but mangoes, corn, or kiwi? I was staying home just to take two Benadryl pills, and my stomach was so swollen that I looked four months pregnant. And oh, the rib subluxation that came with the distention!
And fish? Laughable. Fresh, frozen, two months sitting out in the heat, it doesn’t matter. You may as well send me to the hospital. I found that out the hard way when my friends and I went to a surf-and-turf restaurant for dinner. We were inside for about five minutes when hot itching made my right eye water like I was crying. By the time we walked out—less than a minute later—my throat was closing up. Every part of me was on fire.
Without meaning to be, some of these lists of “approved foods” if you have X disorder and “this is how your disorder should show up” articles can be harmful. They say everything as if they are authorities on whatever subject they’re talking about. But are they always? It took me a while to take them and what dietitians were telling me with a grain of salt.
My body is different from yours, just as yours is different from theirs. And when you add other disabilities, all bets are off. We’re all just trying to figure ourselves out. No one person has the answer—that includes me or you. Help is welcomed, but we have to listen to what our bodies are telling us, too.
A lot of things have changed about my diet since that first summer day in North Carolina. But over the last three years, I’ve regained some of my foods. I’ve gained another six pounds and stayed at 96–98 pounds ever since. It’s been great for my health and joints.
I’m constantly trying to maintain a balance between all of my illnesses while trying to live a good life. That’s a constant battle with needs that change every day.
I still ask for an ingredient list on the occasion I can eat out of the house (after meal planning for the surrounding weeks, to account for use of unapproved oils or iffy spices). The Portlandia joke about wanting to know more about the chicken dish, the chicken itself, what they were fed, and if it was organic or local is not far off from how I must live.
But now I can cook recipes of all kinds, if I avoid my triggers (like vinegars, soy, potatoes, and so many others that doctors have literally written “food” as one of my allergies). I still can’t eat my favorite food—spaghetti—but I can have an oil- or cream-based pasta now and again.
The most important part of my (never-ending) journey is that I look in the mirror and see a beautiful woman who is taking care of herself now.
Yes, I still have a thigh gap. Yes, people still ask me if I’m sick. I’m a 96 pound woman in my thirties who can’t shop in most stores because even x-smalls don’t always fit. But I know now that that’s okay. It’s great, even. At least, that’s what my joints tell me.
Elle Mitchell (she/her) is a multidisciplinary artist and author of raw, character-driven dark fiction. She spends her downtime ignoring new story ideas, fighting for disability rights, researching, and eating more than her share of homemade baked goods (when her body allows). Being a woman with several invisible illnesses, she enjoys living a semi-horizontal life with her husband and spoiled furbutts in the Pacific Northwest.