I’m in the 1% of the American population! Never thought this day would come.
Sadly, not that 1%. The 1% with celiac disease. Way less fun.
Though I have an immediate family member with it, I always assumed the gene skipped me. Not that I ate a lot of gluteny foods. In fact, I didn’t really like bread. Or most pastries. I only ate pizza on occasion and rarely ate the crust. I’d tear off large chunks of my tortilla when eating burritos. I ate pasta regularly but not that often, and bought brown rice pasta about half the time anyway. I preferred pho to ramen, limited my fried foods to tortilla chips and french fries (but only the really good ones), and hated bread crumbs and ice cream cones. After I was diagnosed, husband had a “told you so” look on his face and said that maybe these eating habits were evidence that my body knew. I still don’t really have a response to that.
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| Best husband in the world went shopping the day after I learned I had celiac disease. |
Except that I did drink beer. For a while there I drank a lot of it. My favorites were the malty, extra-glutenous stouts and porters. I got married in a brewery. I had beer art. Getting a beer at one of the many walk-to breweries was the main way we saw some friends or spent a Saturday afternoon. There was one summer where we’d go to sushi with friends like every other Friday, get the big Sapporo bottles and a carafe of sake, finish both, and then walk over to a dive bar and order two Tecates for $5 (in my defense I did split the Tecates with husband). At some point in my mid-30s beer started sitting the wrong way in my stomach. First, the stouts and porters made me feel too bloated. I’d have one 10-ounce pour and be done. But some of those are high alcohol, so I figured that was the reason and I shouldn’t drink more of them anyway. A short time later, three low alcohol lagers made me feel the same. But again, no surprise, three beers is a lot, I should be cutting back anyway. When I found myself nursing a single 10-ounce pour of a 4% pilsner over a couple hours, subconsciously trying to avoid feeling bloated and tired and generally crappy, I thought I’m getting older and alcohol isn’t agreeing with me anymore.
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| Some breweries introduced wine. Bless. |
This thought was reinforced one night when I finished a splash of wine left over in a bottle at home. It was probably two ounces, finished in a couple of sips. I had it with dinner and it was the only alcohol I had that night. Within a few minutes I had that feeling in my bowels that you know and fear and ran to the bathroom. Then again a half hour later. Then again once or twice more that night. I was exhausted and confused and decided to finally go to the doctor. I’d been putting it off because who goes to the doctor complaining that they can’t drink alcohol anymore? She’d give me a blank look, tell me to give up drinking, and assume I’m an alcoholic. Of all the problems, this wasn’t one a doctor would devote much time to solving when the answer was both obvious and something they’d like us to do anyway.
I didn’t drink until the appointment. We discussed the issue and she recommended testing for common food allergies. She also threw in a celiac disease test since I have a relative with it. I left with instructions to avoid alcohol for the time being, though until the test results came back she offered no other plan. Which is about what I expected. The labs came back quickly showing no allergies to milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, soybeans, or sesame. The celiac disease test also came back and, though it was harder to read than the allergen test, looked fine to me. My doctor provided no note, so I figured I’d lay off the alcohol a while longer and see if that helped things. I still wanted something besides water to drink in the evenings that wasn’t straight up sugar, so I got a bottle of zero proof wine, which was terrible, and some non-alcoholic beers, which were great.
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| Post-colonoscopy meal. Thankful that tacos are usually naturally gluten-free. |
But I wasn’t feeling better. I wasn’t making a mad dash to the toilet after every meal but my gut felt… off. I went from feeling like I had my diet dialed in based on my morning poops to wondering what the hell had happened. And why wasn’t being sober fixing it? I scrutinized every ingredient, nervous that a next step was an elimination diet and trying to do a soft version to figure things out on my own. I stopped and started eating different foods for a few months, trying to figure out what was making me feel this way. Eating was making me anxious. Husband thought it might be stress, which I couldn’t exactly refute but was annoyed that stress is the most common answer to women’s health questions, and this experience was causing the stress. Besides, I’d been way more stressed in the past without all the extra pooping. I’d worked through grad school and quit a job with nothing lined up and had to move unexpectedly and planned a wedding while our dog was dying. But now, there was a global pandemic, the absolute worst person we could have chosen was president and fucking things up, my job was taking a toll, the crickets infesting the apartment were driving husband up a wall, my cat had an incurable disease, my rabbit was also having diarrhea, and in 2024 we lost five pets. Oh, and one of my closest and oldest friends was getting married, but my mom was invited even though my friend knows our history, our other friend’s long term partner wasn’t invited, and there was some strife that I was in the middle of.
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| Little Bear Coffee in Albuquerque had the best gluten free apple cake. |
Right before the wedding I got an email notifying me about my bill for the blood work and logged into the portal to pay it. I had a message from my doctor from a couple months back that I’d missed: your test results show you have celiac disease, stop eating gluten forever. I called husband into the room and showed him. We were both shocked for a minute. All this time? How did I misread the results? It turns out that I’d basically read the results backwards. The test was the Tissue Transglutaminase Ab, IgA, and the normal value is 0-4.99. My results were >250. Which is off the charts high. No wonder I didn’t understand how to read it, I’d probably assumed there was a misplaced decimal point. It can’t be that high, right? I learned later that you can’t be officially diagnosed on just a blood test. For insurance purposes, you need an endoscopy so that a gastroenterologist can biopsy your intestines. Only my results were so high that when I did see a gastroenterologist (I’ll write about that day of fun later), he was basically like that can’t be a false positive and you’ve probably had it for a while.
How, I asked? Because I have a parent with the disease and it’s genetic, I likely carried the marker my whole life. Celiac disease is an autoimmune disorder, not an allergy, and the autoimmune disorder was “triggered” at some point. When I think back to what might have been going on in the months or even years leading up to my symptoms, it’s impossible to narrow it down to any one thing. It could have been getting Covid in 2022. It really could have been the overwhelming stress and anxiety I was feeling from 2020-2024. It could have been one of the other nasty respiratory illnesses I had around then (or those illnesses were so bad because of undiagnosed celiac disease?). It could have been a hormonal shift and starting perimenopause. Most people are diagnosed between 40 and 50. I was 38.
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| Blueberry lemon cake that was gluten-free and may have also been vegan. |
Regardless, at least I had an answer and a plan. This whole process took a year: I started feeling sick enough to stop drinking in May 2024, saw my doctor in July, saw my test results and started a gluten-free diet in September, and had my endoscopy and colonoscopy in April 2025. Since then I’ve been as gluten-free as I possibly can, though I’ve also learned that other people’s homes are definitely not safe no matter what they say, some restaurants know what celiac disease is and some think that gluten is the same as vegan, and very few people and places think about cross contamination (I’ve been offered a shared dip with GF crackers, but everyone scooped their portions with their gluten crackers, like double dipping that gives you diarrhea). I’m still not 100% back to how I felt before all this started, but I am feeling better. I’m also better about refusing food from others even if they say it’s gluten-free. I should be getting a blood test every year and if the numbers go down I’m assumed to be responding well.
But this is a dumb disease. Not necessarily because it can be hard to avoid gluten, but because autoimmune diseases as a whole are dumb. Encounter something that exists in nature? Body attacks you. Dumb. Encounter something that exists within your own body? Body attacks you. So dumb. Body thinking your own immune response is something to attack? The dumbest. And it’s genetic and can appear out of nowhere? And other autoimmune diseases can appear after the first one? And exposure can lead to cancer? And women are far more likely to have celiac disease and other autoimmune disorders than men? And the incidence rate is increasing? Who designed this???
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| I made a lasagna without noodles. 4/10. Gluten-free lasagna noodles exist. |
I admit that in terms of incurable diseases, the treatment for celiac is among the best. You don’t have to take expensive medications every day and don’t have to have invasive surgeries. If you accidentally are exposed, the symptoms can disappear within a day (though I’ve heard that some people have lingering symptoms for two weeks). A diet-based treatment can be limiting but it’s fully within my control. Most of the time I feel like I’m living a totally normal life. But there are some things that are a lot more challenging than they used to be: group outings and meals, new restaurants, and traveling. Fortunately, I’m very used to carefully reading menus and food packaging for other reasons, so now I just look for one more thing. And my friends have been so accommodating, doing their best to choose places with gluten-free options or activities that aren’t centered around eating or breweries or even asking for my input. I never ask others to do the researching (except husband: sorry, love, but this falls under the “in sickness” part) and I’ve always been the planner, but I still feel like a burden sometimes, especially because I’m still largely vegetarian, adding another layer of restrictiveness to eating and socializing outside the house. When we went to Hawaii I was pleased at how easy it was to find gluten-free items, even at places I didn’t research beforehand. But I know it’s only because of tourism. We saw husband’s godmother while we were there and even she said she wished that people would either eat the local Hawaiian food or not visit. I’d have loved to eat the local food. Food is a huge part of travel for me, and knowing I can’t partake in a lot of it anymore is a giant disappointment. It also makes me “that girl” now, which I really do hate.
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| Gluten-free banana bread and a really good mocha from a very touristy coffee shop in Kauai. |
Funny, while going back through my old posts searching for something else entirely, I rediscovered one I wrote in 2010 titled Gluten-Free is Silly. Forgetting how I used to title my posts, I was shocked that I’d have believed something like that and embarrassed that I now have to eat gluten-free. Karma is such a bitch! But rereading it, it’s clear I wrote it after my mom was first diagnosed with celiac disease, when I learned more about what it was and how it was different from the gluten-free celebrity fad (or maybe that was never even a fad, it’s not like celebrities are immune from autoimmune disease).
Now? I’m caught between still thinking that gluten-free for funzies is silly and grateful that so many people are gluten-freeish so the 1% of us with celiac disease can have an easier time eating in restaurants, traveling, and buying replacement products. I also now know that non-celiac gluten sensitivity is a real thing, which has probably got to be worse than having a genuine diagnosis because there’s no way to make it seem like a real problem to others without a “real diagnosis”. At the end of the day, if you don’t want to eat something because you feel weird when you do, by all means stop eating it. The quickness with which I dropped gluten is not at all surprising to anyone who has felt this way after eating. Even I used to say I’d eat cheese even if I became lactose intolerant, but I know I’d drop that real fucking fast (it may already be starting so that vegan cheese needs to get a lot better real soon).
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| Tofu musubi in Hawaii — I didn't even want to try what husband ordered! |
However, I also wish that people would be more honest about their level of sensitivity. Picking and choosing which gluten-containing foods you eat contributes to the idea that it’s not medically necessary for a lot of people. There’s so much more awareness and advocacy now, including food and menu labeling laws and gluten being considered an allergen in some places. But there’s still a very long way to go. To share a personal example, ordering chilaquiles: they usually use corn tortillas, but some corn tortillas are secretly corn/wheat hybrids, the chips can be fried in fryers that also contain things coated in flour, red sauce often uses flour as a thickening agent, and the chefs can handle bread right before plating gluten-free chilaquiles without changing their gloves. I take a risk every time I eat out (except for the one entirely gluten-free restaurant near us).
I’m probably not going to make it to China (it wasn’t high on my list of travel destinations anyway), but Italy, Ireland, and Finland are now higher travel priorities due to their higher rates of celiac disease in the general population. I still want to go to Japan, but might have to have some really boring and unhealthy meals and be OK eating from grocery stores. There are clinical trials in the human testing phase (!!!) that aim to reduce symptoms and intestinal inflammation (which can lead to diabetes and cancer) as a result of accidental gluten exposure. My gastroenterologist said he expects something to be in market within a few years, which would be a game changer for traveling.
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| Brown butter and chilling the dough is the secret to great gluten-free cookies. |
In March 2026 I finally had a beer again. I’d found a few single cans of different gluten-free beers at Total Wine (which weren’t gluten-removed or made with quinoa, which for some reason makes my stomach hurt) and enjoyed two at our housewarming party. Let me tell you, that made me so happy. I wasn’t the one person having wine for a change, I was having a real beer, indistinguishable in taste to the beers husband and our friends were drinking, and I’d really missed it. I’m still drinking way less than I used to, I don’t feel like trying to raise my tolerance, but I’m so excited to have options. I even tolerated a gluten-removed beer from a local brewery! Husband and I just got back from Total Wine, bringing home a gluten-free stout, a four pack of my new favorite lager, and a shockingly delicious pre-made mojito that Aisha Tyler made and was there to give out samples. We told her that her collaboration on the Woot Stout back in the day was our favorite and that she had helped me find it. She told us that she wanted to make something that she loved and that solved a problem she had, which is my approach to baking: I’m keeping my standards high and refuse to settle for mediocre cookies just because they’re gluten-free. After lots of trial and error, I cracked the code on a good cookie (cakes and brownies are easy) and can reliably make desserts that live up to my expectations. Now I just need to figure out burritos.






















