"Five Engaging Books that Elucidate the Celiac Experience"

Written By

Eleni Stephanide

Bonus—they’re all by women!


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1.) The Opposite of Loneliness by Marina Keegan


“We don't have a word for the opposite of loneliness, but if we did, I could say that's what I want in life. It's not quite love and it's not quite community; it's just this feeling that there are people, an abundance of people, who are in this together. Who are on your team. When the check is paid and you stay at the table. When it's 4 A.M. and no one goes to bed. That night with the guitar. That night we can't remember.”


Marina Keegan, a writer and Yale graduate with Celiac disease whose essay The Opposite of Loneliness went viral weeks before she passed away in a car accident, wrote these beautiful words. The Opposite of Loneliness is a compilation of Marina’s writing, published posthumously by her parents.


I love how she introduces the condition in a playful, fun, and engaging way: “I’m allergic to stuff. Bread, pasta, cereal, pancakes, soy sauce, seitan, the list goes on. Eventually, it stops at a single word—a single little protein that lurks inside ingredients at the depths of unpronounceable obscurity.”


She writes about the experience of living with Celiac long before “gluten-free” had made its way onto the cultural radar (“Apparently, I’m super trendy. I’m the new vegan. I’m the hip new diet that’s sweeping San Francisco and Williamsburg”); the particular challenges that college Celiacs must navigate, (“how to play beer pong without beer,” and “how not to French-kiss a boy after his late-night pizza” among them); and her mom’s ally-ship and deep dedication to her condition (“She bakes endless batches of wheat-free cookies and breads, pouring them at me from ovens and pans, in the morning and in the mail”).


I would have loved to see what else Marina might have written had her time not been cut short. Her words live on in this book though. And I’d recommend it to Celiacs and non-Celiacs alike—really anyone who enjoys thoughtful and perceptive writing.


**The title of the Celiac essay is “Against the Grain” and you can find it on page 157.


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2.) Jennifer’s Way by Jennifer Esposito


Actress Jennifer Esposito, famous for her roles in the movies Crash and Summer of Sam, was diagnosed with Celiac disease in 2011 at the age of 36 after a lifelong battle with severe health symptoms that no doctor could find a cause for. Jennifer’s Way is a chronicle of that journey, a fortuitous find for me when I first began embarking on my own. Anyone who’s ever struggled with their health or being taken seriously as a woman can find solace in it too.


The memoir begins with scenes from Jennifer’s upbringing on Staten Island in a boisterous, food-loving Italian family. Vivid descriptions of Zeppoles (a fried Italian street fair dessert) as “love in a bag—love that left grease smears on our cheeks and clouds of powdered sugar in the air,” will surely unearth a temporary longing for a return to readers’ gluten-eating days.


She writes about the countless doctors who dismissed or misdiagnosed her over the course of many years, with two gastroenterologists failing to test her for Celiac despite her showing all the classic signs of it. Jennifer was treated for individual symptoms, with no medical professional taking it upon themself to zoom out and connect the dots. Her recollections brought up questions I too have begun to have about conventional medicine—namely, its tendency to treat separate organs and systems as distinct from one another, rather than acknowledging their interconnectedness.


I appreciate Jennifer using her reach and celebrity influence to bring awareness to this cause through telling her story.


3.)  I’m a Gluten-sniffing Service Dog by Michal Babay


Given that microscopic amounts of gluten can trigger an autoimmune response for us, when first diagnosed I feared gluten everywhere.


I eyed everything from my bed comforter to my exercise foam roller to the surface of my nightstand with suspicion; tensed up while out on my jog one night and the smell of baking bread wafted into my nostrils; wrapped my intestinal area in a protective hug when the waiter on TV one night brought out a basket of bread to the couple at the Italian restaurant onscreen. The DJ in my head even turned on the Jaws theme song when I walked down the bakery aisle at Costco a few days after my diagnosis.


As many of us know, even though a food is marked “Gluten Free,” it can still contain up to 20 ppm of gluten—which is enough to cause a reaction in some of us. Here’s where “gluten-sniffing service dogs” can come to the rescue!


In this very sweet children’s tale, the dog Chewie, whose nose can detect amounts as low as 2 ppm, keeps his Celiac owner safe from gluten. Adorably, the story’s conflict is Chewie’s trouble with staying focused enough to make it through training school. He wants to help his owner, but all the squirrels and interesting plants surrounding him keep fracturing his attention. Can he reconcile these two conflicting impulses in time for graduation?


This book is a lovely way to introduce Celiac to any kids in your home, or if you’re a grown-up, its sweet story can help take your mind off the stresses of adult life.


4.) Dear Gluten, It’s Not Me It’s You by Jenny Levine Finke


At turns witty and informative, Dear Gluten outlines in an accessible and conversational way what Celiac disease is, what causes it, the hundreds of ways it can manifest itself (making accurate diagnosis more challenging), and the struggles common to people with Celiac.


Finke uses the metaphor of a toxic relationship, which I think many a Celiac will be able to relate to. Before even hearing about this book, I too had thought about my new lifestyle change as a breakup (especially for IPAs, with whom I’d had both sizzling chemistry and a solid, years-long connection). In fact, when my doctor told me after the initial blood test to continue eating gluten for a week (to ensure more accurate endoscopy results), I thought of those seven days as one last hurrah with my deliciously toxic soon-to-be ex.  My week-long gluten frenzy culminated in an enormous Italian pasta meal from Belotti for The Last Gluten Supper.


Her articulation of the internal conflict between the desire to not make waves or come across as “difficult” in the eyes of others, pitted against the need to protect one’s health, particularly resonated with me: “What will my friends think of me after they see how I interrogate the waiter and sound like such a diva when I place my order?” she writes. “This fear of confrontation and having to look ‘different’ from everyone else is sometimes more paralyzing to me than the fear of getting glutened.”


I appreciate the hopeful message she leaves off with: ““You must never lose hope that your body can recover from the deep damage caused by your ex.  Your body is an incredible vessel. It is programmed to heal—even restore—itself if given the chance.”


5.) A Celiac Mom by Ann Campanella


Campanella is a quiet observer of poignant details whose deep dedication to her daughter comes across in beautiful sentences such as “Her cheeks are slightly flushed, and her skin feels like rose petals. She is so young and tender, so fresh and vulnerable. If I could trade places with her I would.”


Among the themes that Campanella addresses is the often long and frustrating road that many invisible illness sufferers tend to find themselves walking down before arriving at a diagnosis. She describes the eventual “sense of relief and affirmation for all the days, weeks, months and years of struggling to understand what was wrong with [her] daughter’s health” (“Knowing deep down there was something despite the myriad times my concerns had been dismissed, rejected, even ridiculed,” she writes).


I also appreciated that she introduced a larger conversation about privilege into the narrative. Economic disparity affects so many aspects of life, as evidenced most recently by our pandemic, with people ordered to quarantine in their mansions facing a pandemic experience that was worlds away from that of essential workers’ and humans stuffed into one-bedroom apartments with five other roommates.


Reading Campanella’s book sparked questions for me about the unique ways in which privilege affects different members of the Celiac community.


Economically privileged Celiacs have the money to pay for gluten-free substitutes. While traveling, we can afford a kitchen to prepare our own meals. How do homeless Celiacs fare, forced to eat in group homes that may not have sufficient staffing or resources to make individualized accommodations to their meals? Or senior Celiacs in assisted living facilities? Or Cs who can’t afford phones or computers to Google the gluten-free status of a particular item?


A Celiac Mom is just as much an eloquent narrative of the trials, tribulations and tender aspects of parenting as it is a heart-felt chronicle of the specific challenges of living gluten-free in a gluten-filled world. Recommended for Celiacs and non-Celiacs alike!

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.