It started with a slightly itchy bump on the middle of my stomach to the right of and beneath my ribs. It was just painful enough that when I turned to sleep on my side in our Airbnb in Lisbon, it felt like the pinch of the tiny crabs at our beach break in Rockaway. Eventually, after cycling through the worst-case scenarios of what this could be: bedbugs, Chagas, a foreign disease I don’t even know about, I fell into a tumultuous sleep. By morning, there was a cluster of these tiny welts beneath my left breast and spattered across my back—one on the tip of my elbow and one on the top of my knee.
On closer inspection, none of them was just one bump; each had two side-by-side, never overlapping. As a slight headache set in, I became aware of vague intestinal distress. The most obvious explanation that came to mind was that I must have been glutened. But how? When?
I was diagnosed with a gluten intolerance when I was 25 after thirteen years of strange symptoms. Since I was 12, I had stomach aches almost daily, headaches, chronic sinus infections, and insomnia. When I started working at Simon and Schuster as a managing editorial assistant, my salary left me about $50 weekly to live on after all my bills were paid; I was fucking starving. Alongside this paltry income, the one significant benefit I never knew I needed was the premium health insurance they offered. I had been sick for so long with no doctor believing me, that it didn’t occur to me to investigate my symptoms further. But as I aged and the symptoms worsened, my boyfriend Jason (now husband) encouraged me to use the one benefit of our jobs and proximity to world-renowned doctors in New York City to get some answers as to why I was constantly sick.
At first, I said no. What’s the point when every doctor I had seen until now had told me it was all in my head, psychosomatic, or worse, that I was straight-up lying about not feeling well. He was compassionate and caring and said he understood, but those were Connecticut doctors, suburban dummies; now we are in the big city, and he is sure these medical professionals will want to figure out my mystery disease. It took three years, but eventually, I gave in while attending grad school at NYU, which had even better insurance than Simon and Schuster. I started to Google who I should be making appointments with. I took myself to an immunologist, allergist, and chronic disease specialist, with Jason as my self-designated advocate.
The immunologist found chronic fatigue syndrome, the allergist found wheat intolerance, and the chronic disease doctor confirmed both of these things were contributing to my constant pain. My journey to being completely gluten-free had a few false starts in the first 6 months: a beer here, a pizza there. By the end of 2008, I cut all gluten out of my diet and have remained gluten-free for the past 16 years.
I learned to cook (and fell in love with it) so I could eat all my favorite things without bloating, rashes, and headaches. As the years went on, the gluten-free products and restaurants improved, and I felt so much better. I never even thought about going back, even though I loved croissants, baguettes, and pasta more than the average person.
Back to Portugal. I still wasn’t convinced this was a gluten reaction, even though it was a much worse version of the ones I had before. I am so careful. I research for months before every trip. I cross reference the Find Me Gluten Free app with Google and Yelp reviews. We only eat in the safest of places. I learn gluten-free in every language for every place we go to. I ask at every meal, “Is this gluten-free?” “Sem gluten?” “Isento de Gluten?” “Senza gluten?” just to make sure.
For days, as the blisters spread and my headache worsened, a thought pulsed in my head, and sometimes out loud to Jason, “What if this was something else?” Something worse? I did not allow myself to google the symptoms; I knew that would only exacerbate my mounting anxiety.
As the days passed, I kept trying to enjoy the hell out of Lisbon before our vacation ended, but the symptoms did not subside. Three hives on the right side of my forehead. Some more on my back and left thigh. Another curious thing occurred as the reaction began: I got my period. But I had just had my period and it had ended 12 days ago. Did the hives cause the period? Is this perimenopause? I was unprepared, with just a few tampons left in my overnight bag from our trip to upstate NY last month.
A pharmacy was right around the corner from where we were staying, so I took myself over and asked for tampons. She handed me a box the size of a match that said it contained 16. “Do you have any others?” I asked. “No, this is it.” Confused but without other options, I took it. Back in the bathroom that smelled of sewage, our Airbnb host says all bathrooms in Lisbon smell this way (they don’t, but the terrace is so beautiful that we lived with it). I found the instructions for the tiniest tampons in the world and immediately saw the difference: there was no applicator. From what I gather from the picture directions that look like the Ikea pamphlet for a kitchen cabinet, I’m meant to stick the whole thing in my vagina with my fingers. Well, ok then. I hoped my period would end before I would have to embark on this particular adventure.
I couldn’t help but go over every restaurant we had been to and every food I had ingested. Where? When? It’s not as if it mattered. It wouldn’t change that I had to stop myself from itching without the aid of oven mittens like the ones my mom put on me when I had chicken pox when I was 5. The sneezing and congestion wouldn’t lessen if I knew if it was the Piri Piri chicken or the mushroom dish in the weird cream sauce. Still, the wondering persisted until our last evening.
Sitting on our terrace listening to the music, tonight a medley of American songs sung by a French street performer floating up from the plaza at the top of the hill, we talked about the books we had both just finished, how freezing it was at home, what we would miss, what our next vacation would be and of course inevitably we ended up back on the topic of how the glutening had occurred.
Unfortunately, our mind sleuthing landed us at our favorite cafe in Lisbon as the culprit. They baked their own fluffy, delicious gluten-free bread. They have the absolute best wine list but seemed the most suspect. For this many hives to show up, it had to be substantial, it was as if I ate a whole baguette stuffed with wheat flour. I’m angry someone fucked up, but I also just don’t want to believe it. This restaurant is just perfect. And now it’s marred. Maybe. Because I’ll never know precisely how or when I ingested the poisonous gluten.
The one positive thing I did get from this experience is that I can finally answer the question people have asked me for the past decade, or I guess it’s not a question, but more a statement, “Oh, I bet when you’re in Europe you could eat gluten. Their food is much cleaner, not all the garbage chemicals America puts in.” The answer is no, Sally and Aunt Freddy and Cousin Maurice, gluten is gluten no matter where you are in the world, and whether I’m in Kansas or Tokyo or Paris, it appears my body will violently reject it no matter how beautiful the scenery and additive free the food I’m consuming is.