"2020: The Year Gluten and Covid Became My Enemies"

Written By

Eleni Stephanides

In early 2020, COVID became the world’s enemy. In September 2020, gluten became mine.


Californians woke up to the surprise of an orange-tinted sky on September 7, 2020. That morning I awoke with a ringing in my ears as usual, and a fogginess in my head.  Usually the sounds of nature and wildlife filled the air outside my window, but that day eerie silence replaced the singing of birds and the scuttling footsteps of squirrels against my rooftop. All I could hear was the sound of BART in the distance, whooshing past every twenty minutes like ghosts on high-power electric rollerblades.


In the absence of external stimuli to distract it, my attention turned inward—to the intense lethargy I felt, despite having slept eight hours the previous night; to the fogginess in my brain, like someone had poured syrup into it; to the pins and needles shooting through my left leg. I tuned in to the whooshing in my right ear, which had started in March and never went away (ear specialists told me it was tinnitus and that there was no cure, so I adapted and learned to live with it). The quiet in that moment made the ringing sound louder.

Looking through the window at the surreal daytime darkness, I thought about the American tendency to ignore and minimize symptoms until we can’t anymore. The planet that day, with smoke choking its air for weeks before culminating in an apocalyptic-appearing sky, seemed a clear example of this. What started as small hints dropped years ago had escalated into loud, undeniable calls for help. Why hadn’t we paid attention earlier? Where might we be right now if we had?


A few months after the tinnitus started, in June of last year a hairdresser (outdoors and masked), expressed alarm at the amount of hair I was losing. I’d begun noticing hair loss myself back in 2016 and had brought it up with doctors, who pointed to stress and anxiety as the probable causes. Because my routine lab work came back showing no abnormalities, I accepted this answer rather than pushing for more testing. After hearing the concern in my hairdresser’s voice though, I consulted with my doctor once more.


Could the hair loss and the tinnitus be related? I asked him. I’m also tired and foggy-headed a lot of the time, even after a full night of sleep… What could be causing that?


My doctor again ordered the standard lab work— all of which came back normal. Not knowing what more to do, I momentarily set the issue aside.


In the weeks leading up to the orange day, new symptoms arose: numbness and tingling in my left leg when lying down; carpal tunnel in my left hand when holding my phone; itchy skin; episodes of vertigo. I felt like I was dropping my keys more often than I used to. My sleep was disrupted; one night I woke up in a cold sweat even though I didn’t have a fever.


I could not keep believing that these were all just isolated symptoms. Something was wrong. As the Earth called for help outside I realized that inside, my body was doing the same.


Powering on my laptop, I researched autoimmune disorders, then reached out to my doctor asking him to test for the ones that matched my symptoms.  All of the tests came back normal—all except for the one for Celiac disease.


~


Before my diagnosis, I didn’t know much about this autoimmune disease— wherein the ingestion of gluten damages the villi of the small intestines, making it difficult to absorb nutrients (the only cure for which is to adhere to a strict lifelong gluten-free diet).


Like many people, I assumed that you could only have it if you got extremely sick after eating gluten. The diagnosis came as a surprise to me given that all my life, I had consumed gluten-containing foods without having suffered any obvious adverse consequences (at least none that seemed to have directly succeeded gluten consumption).


The countless pastries and junk foods I snuck behind my parents’ back as a kid (sorry, Mom and Dad) came to mind. So did late-night heaping plates of burgers and curly fries paired with frothy mugs of beer friends and I devoured during our college years at Davis.


In Uruguay, where I lived for a year after graduating from college, my daily gluten consumption was colossal: alfajores cookies for breakfast or mid-day snacks, pizza dinners on the front porch with my Spanish-speaking housemates, tall bottles of Patricia beer gulped down during the weekly tambores drum processions.


How had none of that made me sick? I wondered, struggling to wrap my head around it.


As I would learn though, of the 1 in 100 people who have Celiac, some are born with it, but others develop the disease later in life after an environmental factor triggers the gene.

As I would also learn, stomach upset and nausea are only a few of Celiac’s 300+ symptoms (some of which include brain fog, skin problems, and neurological, circulatory, and mental health issues). Some people with the illness don’t experience digestive symptoms or any symptoms at all until other parts of the body begin to suffer consequences due to impaired nutrient absorption (this is known as “silent Celiac disease”).

I’ll never know how long I’ve had it for. Signs like eczema, GERD, skin rashes, ADD, and emotional dis-regulation point to my having possibly suffered from it since I was a kid. All those conditions though can also point to general gut disequilibrium (which can be a precursor to developing Celiac).


What I did know at least was that I was glad I didn’t discover it any later than I did. If not treated early enough, Celiac disease continues to inflame one’s body and can gradually demolish the digestive system. Undiagnosed patients are also at greater risk for health complications from miscarriage and infertility to several cancers to Parkinson’s disease.


~


The diagnosis propelled a major shift in habits and behaviors, almost immediately.


Like many Celiacs do, I bought my own cutting board, pots, pans, and toaster, keeping them on a separate shelf to minimize the risk of accidental gluten ingestion (in the community we refer to it as “being glutened.”)


I replaced most of my personal care belongings too. In addition to being in foods you’d never expect, gluten can also hide in products like shampoos, chap stick, toothpaste, sunscreen, and make-up. While it cannot be absorbed topically, there is always the chance you could accidentally swallow some of these products—you open your mouths while showering, for instance, or eat food after applying lotion. Even some medications have traces of gluten in them!


My eating out habits were forced to change as well. Dining in restaurants always comes with risk for Celiacs, because even items listed as “gluten-free” on the menu may have been cross-contaminated if they were cooked in the same ovens, fryers, and pans as gluten-containing foods. To address this I began calling restaurants in advance, speaking directly with the chef and asking precise questions in regards to food preparation method. Much of the time, I found out I wouldn’t be able to eat there safely.


I didn’t feel better right away. The small intestines of people whose Celiac went undetected for years have suffered an intense pummeling at the hands of the gluten we never knew to be our enemy, so it takes care, attention and time (sometimes even years) to heal them. This in addition to the fact that accidental gluten ingestion can set back one’s progress means that recovery can be a long and nonlinear journey.


You’d think being diagnosed with an illness during a pandemic would be more stressful and lonely than in ordinary times. In some ways though, shelter in place actually protected me.


While there’s never a convenient time to get this diagnosis, I have to say that COVID times came close. Quarantine gave me a quiet space to research, read, and prepare gluten-free, gut-healing meals (many of which incorporated fermented choices like kimchi—a food I have a special connection with, as my mom was eating it the night she went into early labor with me).


I could practice communicating with restaurants over the phone (for takeout orders) without an audience of friends watching me at a restaurant dinner table. Shelter in place also meant I didn’t have to experience any FOMO watching friends dine out without me.


Similar to riding a new bike with training wheels or working out inside a gym before transitioning out to the big scary world where fewer factors can be controlled, quarantine cushioned me from some of the difficult realities of living with Celiac that I’m now beginning to face now that restaurants are reopening and social life is resuming.


~


The whole experience has taught me the importance of perseverance and self-advocacy when it comes to personal health.


Through it I want to encourage other people to take charge of their own. Listen to your body and if anything feels off or out of the norm for you, take note.  Advocate for yourself and push your doctor for tests. Adequate care and responsiveness when it comes to your health are rights, not privileges—so don’t ever feel like a burden or a nuisance for demanding them.


As far as diagnosing autoimmune disorders and other hidden chronic illnesses, the road to clearcut answers often isn’t easy or straightforward. 45% of women (who make up 75-80 percent of autoimmune disease sufferers) are dismissed as hypochondriacs when they first tell doctors about their symptoms. Patients report it takes an average of five doctors and 3.5 years to finally receive a diagnosis.


It’s also hard to gauge the line between normality and illness. In my pre diagnosis days for instance, I rarely woke up feeling refreshed, and often felt tired and fatigued throughout the day. When I wondered whether this was normal though, I would think about other women I knew who also had these symptoms yet were not ill (or at least had not been diagnosed with an illness).


Denial and minimization of symptoms are understandable impulses. Before my diagnosis, the idea of making big changes to my life felt daunting, possibly preventing me from being more insistent and proactive even earlier on than I ultimately decided to be. Confronting difficult truths is never easy.


Doing so is worth it though for the reward of ultimately feeling better. The sooner we identify the source of our discomfort, the sooner we can begin healing it. As James Baldwin said, “Not everything that is faced can be changed. But nothing can be changed until it is faced.”


I’m relieved to have finally found one of the main sources of mine.  Living a gluten-free life is not convenient—it will require meticulous reading of food labels, asking highly specific but necessary questions at restaurants, far less spontaneity when it comes to social eating, and giving up my beloved IPAs—but it’s doable. And I’m grateful now to have a path forward and a chance at healing.

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.