"But you don't look gay-- Similarities between the Celiac and the LGBTQ experience"

Written By

Eleni Stephanides

Around twenty years ago, I realized I was gay— though it would take me six years to come out and become involved with the LGBTQ+ community.


A little over a year ago, smack dab in the middle of a pandemic I discovered I had Celiac disease. Like I’d done at 18, I began making room for a new aspect of identity, seeking out spaces and resources during the adjustment period.


While the two experiences weren’t completely similar, I did notice some parallels between them. Here are the commonalities they shared as well as how they differed.


*Gluten-free restaurants are like lesbian bars; minimal, uncommon, and I feel gratitude whenever I’m made aware of a new one.


The majority of bars and clubs are inevitably not designed with lesbian interests and needs in mind. While after coming out I could still go to them with my straight girl friends, it was always with the knowledge that I likely wouldn’t meet a romantic prospect while there. Not only could I not assume that anyone in there was gay, I also wasn’t necessarily “safe” from being hit on by men.


Similarly, after my Celiac diagnosis, all of a sudden the majority of restaurants—including ones I’d gone to and loved for many years— were no longer safe to eat at. Celiacs can still go to standard restaurants, but with the knowledge that they probably won’t be able to eat most of what is on the menu (if anything), because the risk for gluten cross-contamination always lurks.


Similar to how it did when I found out that San Francisco’s Lexington Bar was specifically designed for lesbians, relief and excitement were my responses to discovering gluten-free restaurants such as Kitava in San Francisco, Mariposa Bakery in Oakland, and Buck Wild Brewery in Oakland’s Jack London (which opened the same month that I was diagnosed).


I knew inside these spaces I wouldn’t have to worry about gluten sneaking into my meal, just like inside lesbian bars I could worry less about men hitting on me, as well as avoid the embarrassment of approaching a woman only to find out she didn’t swing that way.


*Gluten normativity is similar to heteronormativity, and coming out is a life-long process.


Celiacs are reminded of our lower-tier status in various ways, many of which are subtle, others not so much. We live in a gluten-normative world, with non-Celiacs as “the Wheat Majority.”


An acquaintance offers you food. Another friend plans a night out for the group of friends, which involves eating at a restaurant. A cousin invites you to her wedding.  In all of these instances, you can simply offer a courteous no— politely declining the food and choosing not to get into a conversation about your condition—or, you can “come out” as Celiac and watch as things may get slightly awkward while you try to explain that you’re not just one of those gluten-free fad eaters. You actually have a legitimate health condition!


Similarly, many lesbians will tell you that we don’t just come out once, but many times throughout our lives—when someone asks “Do you have a boyfriend?” for instance, or the kids you babysit want to know what kind of boys you like, or the lady you case manage for jokes about bringing you back a husband from El Salvador. In all of these instances, we’re faced with either chuckling along and biting our tongues before changing the topic or choosing to come out to the other person in that moment. And, as Lindsay King-Miller wrote in the Cosmo article “My Life as an Invisible Queer”:


“If you’ve never seen how dramatically a conversation can be derailed by a casual admission of homosexuality, let me tell you, it gets awkward. Even if the person I’m talking to is totally pro homo, we have to take a detour so that they can apologize for accidentally referring to my partner as a man and explain that they ABSOLUTELY think gay marriage should be legal everywhere before they can get back to ringing up my latte, cleaning my teeth, or taking my pop quiz.”

*The invisibility component (of lesbian-ness and chronic illness).

I’ve heard people say things like “But you don’t look sick!” quite often to chronically ill individuals. I know they’re not said with any negative intention. Often it’s even meant as a compliment—reassurance that the illness doesn’t seem to have totally ravaged them if they’re still flaunting a presentable appearance. Similarly, quite often in the LGBT community, queer women hear comments like, “You don't look like a lesbian!”


Why do we believe we can detect either of these identities just by looking at someone? Would you be able to tell Portia de Rossi or Glennon Doyle are gay just by looking at them? Do Emmy Rossum or Zoey Deschanel look like women with Celiac disease (both of them have it)? Does Selena Gomez’ appearance scream LUPUS PATIENT?

There’s a general assumption that illness presents with visible signs, but autoimmune disease can afflict anyone. Many people you would assume to be healthy are struggling with them, or any other number of invisible illness (mental health issues included).  So, too, are people in all countries, of all races and all across the abled / disabled spectrum, gay.


*Feeling the need to explain yourself to people, some of whom still don’t get it even after you have.


Celiacs must also face judgments, like lesbians do, from people who don’t understand our condition. Some might think we’re being too obsessive or unnecessarily cautious when we turn down food that’s shared the same pan as a gluten-containing one. They doubt one crumb can really hurt.


Similarly, family members may think a lesbian is being stubborn or rigid if she says “If my partner isn’t welcome at Christmas dinner, I can’t come home”—or, if she refuses to give the opposite sex a chance (my parents were great but I’ve heard many, many stories of parents who have reacted this way).


Some people don’t take Celiac seriously, treating it as a food sensitivity when in actuality it’s a serious condition that leads to internal damage, organ destruction, and many other health complications from diabetes to dementia to even cancer if not tended to diligently. Similarly, some don’t take lesbians’ sexual orientation seriously (making comments such as “But it could be a phase.” But how do you know you’re gay if you haven’t been with a guy?” “But what if you just haven’t met the right guy yet?”)


*Acceptance and full inclusion are not the same.


“Why do you need an exclusively gay / Celiac space? Society is so accepting of gays / Celiacs.”


This acceptance is appreciated. Similar, though, to how if a disabled person is accepted inside a space that lacks a ramp (which would allow him or her to actually get inside it), or a blind person is told they’re welcome inside a library without braille or books on tapes, or a black person is accepted inside a white space that is still rife with inherent biases that the white people who run it are blind to, then it’s a bit of a moot point. Acceptance doesn’t mean our needs will be met.


Society accepts Celiacs, but I can still get glutened if I dine at a “normal” restaurant. Many “straight spaces” accept gay people, but that doesn’t mean we’ll find what we’re looking for (LGBTQ community and potentially a woman to date) inside one of them.


*Both groups have made tremendous strides.


Back in the 1950s, gay people didn’t carry around hundreds of potential matches within devices that could fit inside their pockets. Nor did they take part in events like Pride or queer comedy nights or have access to countless shows with queer plot-lines on various streaming platforms. Lesbians could be fired from their jobs for their orientation, or rejected by their families. Many opted into marriage with cis men because the consequences of living as openly gay were just too high.


Nowadays, gay people can marry. Wide representation with nuanced plot-lines abound on television, often with the characters’ gayness normalized and seamlessly embedded into the plot-line (rather than the entire story centered around their gayness). New gay couple accounts and queer Instagram influencers continue to show up in my feed on a regular basis. According to a recent Washington post article, 1 in 6 Gen Zers identify as LGBTQ.


Twenty years ago, Celiacs also fared worse. Rare was the company that printed the gluten-free label on their foods, and without the Internet, research into ascertaining the gluten content of specific products proved far more arduous and time-consuming. Fewer restaurants accommodated our requests, because our condition wasn’t on their radar. This minimal awareness of Celiac likely made people afflicted with it, when asking restaurants for accommodations that few other diners had requested before, just seem like finicky consumers.


In this day and age, one can scroll through a plethora of Celiac-friendly restaurants on their phone (a remarkable innovation for us, similar to what Tinder and other dating apps were for gays, who on average compared with straight people have a harder time meeting dating prospects in day-to-day life).


Relatively speaking, it’s a positive and promising epoch in history for both LGBTQs and Celiacs alike. This isn’t to say we don’t still have a ways to go, or that there aren’t still improvements to be made. It is to say though that compared with past times, the place we’re in now is promising.


*This observation might be limited to bigger, more liberal and populous areas of the U.S. and less applicable to smaller, more rural towns, where gluten-free options tend to be fewer while awareness of Celiac might also be lower. Just like in these same smaller towns, gay bars and LGBT acceptance is also likely to be sparser.


DIFFERENCES


*It’s more acceptable to make fun of Celiacs or gluten-sensitive people than it is to make fun of gay people in this day and age.


Author Sara Eckles wrote in her book: “Say you have a child whose peers’ parents routinely bake homemade cookies for class fund-raisers. Cookies with little icing smiley faces and a separate batch of gluten-free ones for the pussies.”


Celiacs are common punchlines for jokes like these. People will outwardly make fun of or roll their eyes at gluten-free eaters, not bothering to educate themselves or assuming that they understand all that they need to know. If someone makes a gluten-free joke, people tend to laugh along—whereas if someone pokes fun at gay people, it’s generally frowned upon in this day and age.


*Your day to day life, habits, cooking practices, and social activities undergo shifts when you have Celiac. Not as much when you come out as gay.


After coming out as gay, your social circle might change as you find yourself wanting to surround yourself with LGBTQ community. You may distance yourself from friends and family who don’t agree with your “lifestyle.” Maybe you’ll relocate to a new city to find greater acceptance and higher likelihood of meeting a partner.


Community and daily habits also shift after a Celiac diagnosis. No longer able to default to the restaurants or communal eating spaces that typically dominate most people’s social lives, I was forced to become more creative in coming up with alternative activities to take part in with friends. Many Celiacs become better cooks after their diagnoses, out of necessity.


The degree to which your habits change after coming out, I’m guessing, also depends on how big a part of your identity your dating life or sexual orientation constitutes. In my opinion, making Celiac a peripheral part of one’s identity is harder.  Because we need to eat to live, Celiac reminders resurface on a daily basis— three times a day specifically (and during moments in between while snacking). We’re forced to think about it as a means of survival. If we stop thinking about it, we will get sick.


*Celiacs may feel less of a sense of community than LGBTQ+ people in this day and age do.


Friends and family were wonderfully supportive when I was first diagnosed. Some had gluten-free beers and cookbooks delivered to me, while others offered to have gluten-free cook sessions together (“no gluten allowed in the kitchen!” one proclaimed emphatically). My mom ordered a gluten-free pumpkin pie for Thanksgiving and organized the entire meal to be 100 percent gluten free.


Nothing though can fully replace having someone in your life who’s going through the same thing as you are, and who truly gets it from firsthand lived experience. Just as occasional feelings of self-doubt and isolation can arise within both groups, so can feelings of elation when you encounter people in a similar boat as you— your connection made all the stronger by the fact that relatively few share in the experience.


After coming out at 18, I spent maybe one year feeling like I hadn’t found people who could fully relate. From sophomore year on though, I became much more involved in the LGBT community—volunteering at the center on campus, interning for Curve Magazine (back when they had an office in San Francisco’s Mission district), attending my first queer prom with the woman I was dating, and taking a Queer Studies class.


Still, not everyone’s experience is like mine—particularly if you are an LGBT teenager, or a gay person growing up in a small rural area. Many of these youth don’t know other queer people, so they form connections through the internet or online groups.


After my Celiac diagnosis I felt like an LGBT youth once again, or similar to the way I’d imagine a young rural area lesbian might feel today. I had yet to encounter that IRL group of people whose health required that they be just as careful as mine does. People who would push back alongside me and ask the necessary questions at restaurants, weddings, social gatherings, or pretty much any scenario involving food (which is nearly all) People who were aligned teammates, in other words.


This is common for Celiacs, in part because ours is much smaller than the gay community (1 in 100 compared to 1 in 10). That said, online message boards proved helpful. So did Facebook support groups, podcasts, and books about Celiac. Most of my mentors were IG influencers, podcast hosts (shoutout to the incredible Coral Barajas), and people I hadn’t met IRL.


*There is less conceptual understanding of Celiac than of LGBT.


‘Gay’ as a concept is pretty easy for most people to wrap their heads around—you’re attracted to members of your same sex. Period. Celiac, on the other hand, is a more complicated condition. I myself continue to learn more about it every day. Such as how it’s estimated that as many as 80% of Celiac sufferers, or 2.5 million Americans, don’t even know that they have it— because more than half the cases don’t even produce digestive symptoms!


Or how ADHD and depression in kids is linked to Celiac because 80% of the body’s serotonin (the feel-good chemical) is produced in the gut. Or how leaky gut and other conditions like IBS can sometimes be the precursor to Celiac, and that oftentimes people who develop it later in life have an unhealthy gut predisposing its onset.


Most people don’t know these things about Celiac. Many aren’t even aware it can cause organ damage, or know what intestinal villi are. They just know it’s the condition where people can’t eat gluten (**I don’t fault them for this! Why would they, unless they knew or had a close relationship with someone who was Celiac?)


That said, it’s easier to feel isolated as a Celiac when you take into account that collective societal understanding often helps lift a weight off sufferers’ backs. Relief and a sense of safety can come from the knowledge that while people may not share your condition, they at least get it to some extent.


That lack of common understanding can also at times place the onus of educator on us. We feel like we have to explain ourselves, or be the spokesperson for people with our condition—because how else will others learn?  Motivated by the desire for greater understanding of our community, many of us are eager for people to partake in the consumption of this knowledge (if they’re open to it).


~~


After I came out as gay, I could begin living a more truthful life.


After I was diagnosed with Celiac, I could begin living a healthier, more conscientious one.


Both experiences presented their own set of challenges—but both also opened new doors, steering my life in a new direction and onto a more authentic course.

A queer writer with Celiac disease, Eleni was born and raised in the Bay Area. Her work has been published in Tiny Buddha, Out Front Magazine, The Mighty, Curve Magazine, Thought Catalog, Elephant Journal, The Fix, United by Pop, The Mindful Word, and Uncomfortable Revolution among others. You can follow her on IG eleni_steph421 and read stories from her time as a rideshare driver at lyfttales.com.