The story of getting sick with histamine intolerance

What it looked like as it developed and as I got sicker

When I look back over time, there were signs of what was to come. I always felt feverish after eating eggplant, especially roasted (so sad, baba ganoush, my love!), always got super congested while drinking beer, especially craft beer. My stomach was off after drinking the night before, anything more than a glass of wine, and I’d be hung over. Kiwi gave me oral allergy syndrome, pineapple, too. Walnuts and avocadoes made the inside of my mouth feel rough sometimes.

And then there was my diet. When left to my druthers, these were some of my favorite foods: miso, vegemite, pickled anything, mustard, fermented hotsauce, Indian lime pickle (saying it now makes my mouth water), kalamata (or local, Azapa) olives, yogurt (the tarter the better) blue cheese, sundried tomatoes, sauteéd mushrooms, soy sauce, roasted red peppers. Basically, anything high in umami was a favorite. I made tomato soup winter and summer, and ate it hot and cold, so much citrus, all the strawberries. And what I didn’t know was that all of these things were setting me off in tiny ways all the time. The backs of my hands were frequently itchy. Also, the tops of my feet. My scalp, my left (why?) shoulderblade. I blamed biking in the wrong underwear/pants combination for irritation where the seat meets the body. Occasionally I would have to change deodorant, because my armpits seemed to be reacting. We are an itchy people, I thought, with a couple of other female family members also complaining of itching.

Then in about 2016, I kept on getting a weird kind of sick. Diarrhea (sorry, but you clicked), but not in response to, for example, a very rich meal. I couldn’t tell what was causing it. And I had the strangest sensation, which I would later describe as a whoosh, as though a wave came over my body, from the ears down, somewhere between the sensation of standing up too fast, passing out, and being motion sick. And I’d be sick immediately. Once I was at my goddaughter’s house, eating a delicious risotto with squid rings, a salad with vinaigrette, a fruit salad and some juice. I asked my comadre (my goddaughter’s mother) so many times about every ingredient for days. It was so obtrusive that it has weighed on our friendship to this day.

Another time I was at work. I had felt hung over, despite not having drunk anything the night before, and vaguely migrainey. Sometimes caffeine helps, so I had bought a Diet Coke as I biked over for a meeting. The flourescent lights and the windowless room did not help. I got sick there, finally went home and felt ill for days. I traveled to Chiloé (a large island in the mid-south of Chile) shortly after, and when I took the transfer back to the airport a few days later, even the (same) driver commented on how ill I had looked on the way down.

Again and again, sometimes close to when I’d eaten or drunk something, sometimes not. A second cup of coffee at my friends’ house meant I had to lay down for two hours before I went home. I went to visit my sister’s family in San Francisco, and housesat the home of some nearby friends. Once in SF, I was eating sourdough bread, Asian brothy soups, greek yogurt, and a ton of strawberries. I was sick every day, and I had no idea why. A green tea matcha smoothie felt like it might kill me (retrospect and foreshadowing, hello matcha, soy and yogurt). Later on that trip, I went to stay with a friend in Seattle. I was researching what I could and I came up with many options, SIBO (but I had no gas), leaky gut (but no one believed in it), FODMAP intolerance (but it didn’t line up) or some other kind of intolerance, but I didn’t know what (oxylates? salicylates? histamines? nickel allergy?) Nothing made sense. I lost 20 pounds in a month and felt awful all the time.

By the time I got to Seattle, I was eating rice, broccoli, orange vegetables and grilled fish, and nothing else. More weight dropped, and I still felt whooshy and unstable, but at least I could stand up and also leave the house. I was hungry all the time, but felt best when I had not eaten.

I got back to Santiago, continued researching and was determined to see some kind of doctor. Gastro? Immunologist? Allergist? I went over it again and again in my head, and finally landed on gastroenterologist. They tested and scanned, took fecal samples (well, I delivered these and wow, was that an experience), tested my blood and urine. With test results in hand, I went to a second gastro because the first one was fully booked for months, and I didn’t think I’d make it months. He said I seemed fine.

But I was not fine. I had added olive oil and salt, but I was still dropping weight, and still feeling ill (note: I was eating lots of leftovers still, and had not yet made some important-for-me changes). More scans, a million and one allergy tests, none of which turned up anything except that I am a very easy poke in the inner elbow type of person.

Another month went by and I went back to the gastro to look at my results. You’re fine, he said, though he noted my additional weight loss. “The only thing fine about me is that my asthma seems to be gone now,” I said.

I hadn’t told him I had asthma. The thing was, I didn’t have it. Or I did. A few years before this all happened, I developed what I considered to be viral bronchitis. A whistley breathing out at the end, also known as wheezing. And some crackling. I didn’t feel great, but the air quality in Santiago in the winter is pretty bad, and I figured I was just responding to that, and eventually it went away for the most part. But the next winter it was back, and I thought I should go get checked out and we did a whole bunch of tests, including the methacholine challenge test where they induce asthma with successively higher doses of the aggravating substance, and then rescue inhale you and my GOD was that awful, but it showed that I have asthma, so yay?

And then I was given a prescription for an inhaler, which I used sometimes and sometimes not, because it made me super jangly, though it did stop the mid-cardio barky cough, which was nice. The broncopulmonary specialist also wanted to put me on Singulair, which is a mast cell stabilizer, and that becomes important later on (or go back a step and read Jodi’s piece on mast cell disorders. I refused the Singulair, because I felt ok without it, and I read about it and it seemed disproportionately invasive to my problem, so I didn’t take it, and went on with my huffy-puffy life.

It is not weird to be diagnosed with asthma. It is a little weird to be diagnosed with asthma in your 40s. You’d think you’d have noticed it before, this not being able to breathe, and though it is possible to have adult onset asthma, it’s not that common. This struck me at the time, and it also struck my gastroenterologist. He listened to my lungs, had me cough and proclaimed my lungs “clear as a bell” (or Spanish equivalent). Which seemed strange to him, too.

I mentioned leaky gut. He said maybe, but that wouldn’t explain the asthma. We talked about Occam’s Razor. The simplest explanation is probably the most likely. Should I go to an allergist, I wondered? But my allergies are not that bad, mostly environmental, and by the time I was doing the testing, I wasn’t reacting to anything, because my immune system was so chill from my four ingredient diet. Even foods I’d tested positive to before, like shrimp and lettuces (yes, lettuces) came up negative. I have one but not both of the markers for celiac, and no indicator of celiac disease (though I have not done the biopsy).

He asked me if I ever had any itching.

I was ready to say yes, but then took inventory and saw that that too was gone. Head shoulders knees and toes and everything seemed ok. I was still woozy in the stomach, kind of dizzy and a bit panicked, but everything else, all of those strange discomforts that I had normalized, seemed to be gone.

And he was like, “look, you’re fine as long as you eat only four things. But that’s not a good long-term solution. I think everything begins in the gut, and that’s why I studied gastroenterology. But this may be something else, and I don’t know what kind of doctor to tell you to go to.” My hopes sank. And then he said this:

“Maybe you need a visit outside the canon of western medicine.”

“what do you think is wrong with me?” I asked.

“I think it’s something I don’t know about yet,” he said, “but I think you will find a solution.”

Huge shout out to this doctor for a million and one things, including listening to me, not having to know everything, neither mansplaining nor gringosplaining me, and subsequently being very interested in everything I later told him.

I thanked him kindly and took my non-asthmatic self back home on my bike, and thought about it for a couple of weeks, while I continued to mostly eat only four things, felt just ok, but not great, and continued to drop weight, and suffer from a kind of anxiety I have never had before, and hope to never have again. I was terrified of any and everything that was not my four things. I would walk through the feria (farmer’s market) and the sight of tomatoes would turn my stomach. I passed by the fried Taiwanese snack shop downstairs from my then-apartment and thought I would throw up. Everything made me feel awful.

I remembered then that the gastroenterologist asked me about my eating habits, and if I ate fried food. I made a disgusted face and I said “me produce rechazo” (it grosses me out), and then I added, “probably because I’m afraid I’ll feel sick if I eat it.” He said, “don’t be so sure, there are a lot of different kinds of reflux in the body. You are very in tune with how you feel, and you probably actually felt something physical shift in your body.”

It was after a phone call a few weeks later with a good friend (and by the way, this wrecked my human relationships as I was wracked with fear and anxiety and so I’m sorry to everyone I was a jerk to or absent from for allllll of those months), who said, “why don’t you go see a naturopath” that I started thinking, maybe the answer did exist, but just wasn’t something that I (or my gastro) could see. I was so terrified that I cried just thinking about it. Every now and then I would test a different food. One time I got sick while the food was still in my mouth (tofu), like someone had flipped a switch. Sometimes I would panic while eating a single slice of cucumber. I could not continue to live that way. I made an appointment.

coming soon: what we figured out, and how we figured it out.

Spoiler: I can eat (lots of different) food now! The bowl you see up top is what I ate while I was at one of my very patient friends’ houses in Seattle. I was scared of the zucchini. Turns out you (I) don’t have to be scared of zucchini. Phew.

Disclaimer: If you are sick, do not ignore symptoms. Seek medical attention.

P.S. I do believe in western medicine. I also believe in reading the signs that your body is showing, and for me personally, an elimination diet was an important part of that. More on that soon.

P.P.S. You don’t want to change your diet, I get it. Maybe you don’t have to. I was a food and travel writer at the time this was happening. It was an insult to my identity like no other, which I will also go into at some point. This was all very life-altering, and put a gigantic crimp in everything. But I’m still here, and I’m still writing. Travel, not so much re: pandemic, but who knows what the future will bring.

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