Celiac diagnosis stories- as told by Gluten

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Celiac diagnosis stories- a close up photo of a sad asian person after diagnosis of celiac disease.

Celiac diagnosis stores are about Gluten’s rise and fall in my body, as told in Gluten’s unique voice every Celiac will recognize.

Celiac diagnosis stories - as told by Gluten

Gluten is my name, and I am here to tell one of my many celiac diagnosis stories. This is the story of one of my victims, who I quietly wrought havoc on for years before my presence became known. Since it is ultimately a story of defeat, it is not with complete pride that I tell it—but I do hope you’ll pay me the accolades I am due for my show of bravery (which humility requires large amounts of).

My MO  is to stow away inside loaves of bread, cookies, fake crab meat, shampoos, and even a gluten-eating housemate's shared cutting board. Bottles of soy sauce and cans of Campbell’s Soup are the Trojan horses I use to gain entry to my victims.

Once inside, I do not directly attack them but rather, trick their own bodies into ambushing themselves. More specifically, I convince them to raze over their villi (the long, finger-like projections lining the small intestine) to the point of near-complete demolition.

It’s a brilliant tactic, if I may say so myself. A respectable man once professed, “A sign of a successful life is if you can get others to do your work for you while still holding onto your power.”

To have power is to retain utmost control while exerting little effort. Fighting takes energy, so I find it opportune that my victim’s bodies do my dirty work for me without needing to lift a finger.

Let’s rewind our celiac diagnosis stories to when she believes it all began (though there is no way to say for sure, reasonable conjectures point to this time frame).

I started off subtle and quiet in my attacks, knocking down her lactose army in the summer of 2015, making it so that she could no longer consume large amounts of cheese or ice cream the way she did back when she was a gluttonous kid. At the time, she attributed this to mere aging; many people lose the ability to produce the lactase enzyme as they get older. This loss is not necessarily indicative of an underlying disease.

In July 2016, I began stealing strands of her hair.

Skin rashes came and went for the next several years.

In the months following a battle with gastroenteritis in Mexico at the beginning of 2020, I occasionally (but not every time) gave her slight stomach pain after she ate large amounts of me.

Antennae, raised by this point, she consulted with a person in a white coat seeking answers. He ran tests—none of which detected me. This is a common theme in all my celiac diagnosis stories!

And so, from March 2020 on, I continued my small ambushes.

I stole silence from her, replacing it with constant whooshing and ringing in her right ear.

I zapped her of her energy, leaving her head foggy and struggling to keep up with basic daily tasks.

When she went in for a haircut in June of 2020, the hairdresser was alarmed at the amount of hair that came off into her comb. She told her it was not normal.

This sent my former victim back to the person in the white coat. Could the hair loss and the ear ringing be related? she asked them. Why was she tired and foggy-headed so much of the time, even after a full night’s sleep?

I rubbed my hands together when she asked these questions, a satisfied smile overtaking my lips as I responded Yours truly, with sinister pride. You see, I take pride in telling my celiac diagnosis stories.

In the months that followed, growing bored and restless, I decided to up the ante and attack from new angles.

I spun her body in circles, necessitating that she hold on to steadying objects to keep from falling over.

I borrowed tactics from the God Zeus (who I admire and wished to emulate), sending lightning bolts up and down her leg, and electric shocks into her hand when she held her human talking device (carpal tunnel syndrome).

As much as these attacks rattled and confused her, she still couldn’t definitively point them to my presence. She didn’t even know who I was—at least not really.

"It's possible to have a negative blood test and still have celiac disease: a not-uncommon theme in all my celiac diagnosis stories!"

Why is celiac disease misunderstood?

You see, the condition I result in is often misunderstood and dismissed. Many people believe the celiac disease to be just a food allergy, a diet, or a trendy lifestyle choice rather than a serious autoimmune disease.

I am grateful for this ignorance; downplaying and minimization will always be welcomed allies.

She wondered if her symptoms were just a normal part of aging for women. Maybe the uncertainty of the times was turning her into a hypochondriac?

Many people suggested stress, another ally of mine, to be the cause. That year, after all, a pandemic had swept across the planet, throwing a cloud of anxiety over the lives, hearts, and minds of many, even those who had previously been healthy.

While I will acknowledge stress’s role as my sous chef, I won’t let him take more credit than he deserves. Not when the true captain here, the ultimate mastermind, the author of so many celiac diagnosis stories, is yours truly.

One dark, sunless day in early September, E decided that enough was enough. The time had come to vanquish her enemy once and for all.

That day, visual and tactile reminders of the damage inflicted by the planet’s enemies—fossil fuels, automobiles, giant corporations, a government that cast doubt on the existence of climate change—were undeniably rampant. Smoke choking the air. The sky was an unprecedented, sinister orange.

I surmise that they prompted a cognitive leap on her part, wherein she compared her body’s afflictions to the dysfunction wreaking havoc on the Earth’s interconnected systems. The messages relayed by her ailing flesh sack, she likened to the signals sent off by a planet in peril.

Personally, this comparison strikes me as a bit grandiose, even coming from the likes of a hubristic warrior like me— but I suppose I see the parallels. Like the planet’s diverse ecosystem, the human body’s complex, seemingly disparate systems work together in symbiosis to help the entire machine function. A disruption in one can result in a breakdown for all.

As electricity ran down her leg, a sound rang through her ears, and the sky radiated orange outside; she unfolded her glowing connectivity box and inputted various suspect descriptions into it in search of her enemy.

Then after lining up the contenders one by one, she re-enlisted the person in the white robe for help with identifying the culprit, stating firmly that she did not believe the enemy to be her mind alone and that whoever it was, she wished for it to be found and conquered.

The person in the white robe conceded, expanding the search. More tests were administered than had been before. And this time, my fingerprints were found in the damage left behind.

Caught red-handed, at long last.

My victim was surprised at first, believing (as many people do) my telltale signs to be nausea, diarrhea, and cramping— which she did not experience consistently, and therefore had no reason to suspect me.

She did not know that some people I afflict never develop these symptoms. She was also unaware that I can present in numerous other ways, especially after I’ve been left to run rampant, undetected, for a considerable time: brain fog; nerve pain; numbness and tingling in the legs; vertigo; skin rashes.

After her diagnosis, books, and research on my condition—humans call it “Celiac disease,” formerly Celiac Sprue  (spelled coeliac in other countries) — informed her of my characteristics.

How I afflict 1 out of 100 people, sometimes from the very beginning of their life, other times after an emotionally stressful event triggers my gene to turn on.

How an estimated 80 percent of individuals living with Celiac are unaware that they have it.

How even the tiniest crumb of me can cause harm to my victims’ organs.

From there on, my former victim embarked on her journey to rid her life of all traces of me.

She would discover how prevalent I am, how I present in products from shampoos to sunblocks to certain medications to a gluten-eating roommate’s haphazardly washed cutting board. Humans don’t drink their shampoo or lotion, but it’s always possible that they can ingest me when opening their mouths in the shower or eating food after applying lotion.

The epoch she was living in—wherein another invisible menace was on the loose (in response to which the people of her time had developed extreme vigilance)— had trained her to avoid me.

Like the virus that many across the globe had learned to fear, she began to regard me as lurking potentially anywhere and everywhere.

She eyed everything from her bed comforter to her exercise foam roller to the surface of her nightstand with suspicion, repeatedly cleaned countertops and dishes; was wary of touching or accepting food from others if they’d been consuming me.

She even avoided putting her hand on stairway railings in public out of worry that someone whose hands I had been on earlier might have touched them.

The fear I evoked in her presented itself in a variety of other ways too.

For example, when the waiter on TV one night brought out a basket of bread to the couple at the Italian restaurant, she shuddered and recoiled, wrapping her intestinal area in a protective hug. Bemused, I chuckled and tried to tell her my powers cannot transcend the screen of a television. Though she did not hear me, she soon realized this on her own.

One evening while reading in bed, the mere perusal of the word “wheat” on page 133 of the book Entangled Life brought her heart rate up.

Walking past rows of baguettes, bagels, and cookies down the bakery aisle at Costco, the DJ in her head turned the music to the theme song from Jaws. It flattered me to be compared to such a mighty and destructive behemoth.

I also slithered my way into her dreams at night, implanting my titillating Trojan horses that few humans can resist when their defenses are down and which, sure enough, her dreaming mind gobbled up (she awoke in horror shortly after realizing what she had done).

The truth about Celiac disease

If you want the truth, I’m disappointed. Disappointed that my power and dominion were only short-lived. Disappointed that her awareness and newly adopted habits now restrict my access to her. Disappointed in how this celiac diagnosis story would end.

I can at least take solace in the knowledge that I’ve made her life less convenient and straightforward.

For instance, most restaurants are unsafe for people of her ilk. Despite their gluten-free options, many often use the same ovens, fryers, and pans to cook their gluten-containing food, exposing my victims to the possibility of what is known in their community as “cross-contamination.”

Because of this, E must be extremely proactive to protect herself—calling restaurants in advance, speaking directly with chefs, and asking precise questions in regard to food preparation methods. 70 to 80 percent of the time, she realizes she will simply be unable to order more than a glass of water.

I can also take solace in the fact that even though I’m gone, her journey has yet to fully end. You see, I left quite a mess behind. In all of my celiac diagnosis stories, I leave a mess, a trail of destruction.

An analogy for you humans: envision the inside of the body as a village. During my reign of power, I ram-sacked this girl’s streets, leaving blood on the sidewalks, windows broken, shelves of businesses pillaged, and countless security guards slaughtered.

Ousting me didn’t get rid of any of that. Much work remains to be done.

She’ll have to heal the town; sweep up the debris using probiotics and multivitamins; tend to the wounds of her vanquished men and women with the gauze and bandages of whole, unprocessed foods, an abundance of fruits and veggies.

The structures remain precarious, so letting in tourists like dairy, processed foods, and sugar poses risk for further toppling (healthy villages can withstand the barrage of these unruly, disrespectful travelers, but the ones newly ravaged by the likes of me cannot).

I beam now as I write this, realizing that although I might be barred, my legacy may live on, possibly for a few more years even.

She must also remain on guard against me for the rest of her life—because I can and will return if she is not extremely careful.

Still, it’s to my chagrin that I’m forced to admit she’s doing well in my absence, having armed herself against me in a number of disconcerting ways.

She spends less time in restaurants, for one—where I often lurk on grills and shared kitchenware waiting for a cook to inadvertently transfer me into a supposedly gluten-free meal.

She’s rid her cupboards of every single one of my Trojan horses. I cannot hide my roommates’ cutting boards anymore because she’s bought her own and keeps them in a separate area of the house.

She seems slightly more energetic than she did when I first took residence inside her. She sleeps better at night. Now that I’m no longer fogging up her brain, she can think more clearly.

She’s also begun to spread awareness about me, which I don’t like—disruptive as it is to my mission of destruction.

Yet I know there are other unsuspecting souls out there from whom I can steal some vitality— at least for a few months or years before they catch me. Growing awareness has made life-long dwelling less of a viable long-term prospect, but like a vagabond who constantly changes homes, so too can I subsist off intermittent stays and short-term lodging.

And so I leave off with encouraging words: onward, Mighty Gluten. On to the next victim you will go. 

These are my Celiac diagnosis stories: what's yours?

Article by
Eleni Stephanides

Eleni Stephanides, the author of "Celiac diagnosis stories- as told by Gluten," is a 30-year-old queer bilingual writer adjusting to life with Celiac disease, born and raised in the Bay Area.


"Many people believe Celiac diagnosis stories are just about discovering food allergies, eating a different diet, or trendy lifestyle choices, rather than a serious autoimmune disease." | ©blvdone / Adobe Stock