TW: Mentions of eating disorders, bullying, hospitalization and emetophobia
“I can’t…” I whimpered, dropping the spoon back into the bowl, still full of food.
“Please, Tony,” my mom pleaded, “Just one bite, please.”
“I can’t,” I repeated. I remember staring at the couch, desperately wanting to sit back down on its soft cushions, but no, I had to eat at the island. No more distractions. I do not remember what I was trying to eat — my brain has worked ridiculously hard to try to make me forget.
I refuse to forget completely.
I worked too hard to be where I am now to let my memory impede my progress.
But details, such as what I ate then, no longer matter. What matters is that I could not eat it. Instead, I remember running into the bathroom and vomiting what little my stomach held into the toilet. I had tried to keep it in, but my brain and body were conspiring against me. All my parents could do was watch helplessly as another meal was stolen from me.
This was a common occurrence in 2021. I lost meals every day, often multiple times a day. It was no way to live, and I was barely surviving then.
My relationship with food has always been turbulent to say the least. I started getting stomach aches when I was two. My parents wondered if perhaps I had a stomach bug.
To this day, I wish it were just that.
But I was not so lucky.
It got worse, and soon I was losing weight and vomiting. My bones stuck out through my skin and were brittle. During my (third?) birthday, the other children played with my toys. I slept on the couch, too weak to join them. Before I got sick, I was the loudest of the bunch.
I remember, years later, my parents telling me this story. They said I looked like one of those starving kids in developing countries, the ones that are so malnourished that they are barely alive, too weak to talk, play or run around. I say this to put into perspective just how much my body was wrecked during this time.
Back in 2005 or so, my parents did everything they could. I was taken to doctor after doctor, screened for cancer, meningitis, things that terrified my poor parents. These tests came back negative, which would have been a relief, except for the fact that I continued to lose weight. My desperate parents kept sending me to faceless doctors—there were too many faces to remember, and I was so young—in the hopes of saving their baby child.
It was by chance that they caught the culprit a week or two before I needed to be hospitalized and put on an IV. My mom found an article online and sent it to my doctor. The condition in the article was celiac disease. At the time, cases in children were rare, and children as young as three were almost unheard of. The doctors decided to test me anyway.
I had celiac. Yes, all of that was caused by celiac.
There was no cure. But there was a treatment; simple in theory but less in practice. I just had to avoid gluten, and within a couple of weeks of going on a gluten-free diet, I was returning to my old self. I was running around again, playing, eating, being the three-year-old I was supposed to be. My parents made sure there was never any way I could eat gluten.
Gluten is an infernal protein. It is interesting how an insignificant little thing can cause so much damage. From a young age, I had to learn that some food could hurt me and that some food was dangerous.
If I consumed even a single crumb, my body would turn traitor, sending my immune system to attack me. My intestines, to be specific. The reason I nearly starved to death at two years old was that my immune system attacked my bowels to the point where they were beyond function. I was unable to digest food. And when I stopped eating gluten, my immune system called off its siege, and my poor gut was finally able to heal.
Let me explain. Within our small intestines is a small hairlike structure known as the villi. These villi are responsible for absorbing the nutrients from chyme — the slurry of food and water and other such things from the stomach. In a normal, healthy gut, all the liquid is absorbed into the body, leaving behind solid waste that our bodies expel. Without villi, however, that chyme has nowhere to go but out, wasting all those precious resources. It takes time for villi to grow back; hence, my motto is “When in doubt, go without.”
It has been and always will be better for me to skip an entire meal than to eat a meal that contains gluten. If I skip a meal, I just lose out on the nutrients from that meal. If I eat gluten, I not only get no nutrients from that meal, but I lose out on nutrients from subsequent meals for days afterward.
Eating gluten-free has been tough. Back then, there was no pizza, bread or pasta. Things like ice cream, caramel and oatmeal sometimes contain gluten. I learned to read the labels on foods when I was little. I ate meat, vegetables, fruit and cottage cheese. That was it.
A doctor told me I would grow out of it by age twelve. Liar. I’m not growing out of it, considering my twenty-first birthday will occur this September.
I remember sneaking a saltine cracker at school—just one—when I had recently turned twelve. I cried when I got sick that night. I wish I knew who that doctor was. A small part of me would still like to flip him off and scream at him. People don’t grow out of celiac; research has shown that. That false hope was for naught. Why couldn’t he have just kept his mouth shut?
In elementary school, the other kids bullied me because I had to refuse their treats when their birthdays rolled around. They thought I was ungrateful. In truth, I wanted nothing more than to eat their pastries, cookies and birthday cake. By then, some gluten-free snacks and pastries began to exist (at double the price), and Mom would send me to school with those so I, too, could have a treat. I, too, could be included.
Or… not.
The other kids were jealous of me, thinking I haughtily refused their food in favor of my own. The bullying persisted. I felt like a freak.
I got used to it. I tried to ignore it.
Even now, sometimes, I feel like a burden when my friends and I are spending time together, and we need to find a restaurant with gluten-free food. Some people even tell me I’m making celiac up as if I would lie about such a thing. And others don’t take celiac seriously. I have had to make my peace with it.
My brother was born when I was seven. When he was two, and I was nine, we began to suspect that he had celiac. So, my parents stopped giving him gluten. I remember feeling sorry for him and selfishly feeling glad because, finally, someone else was like me. The guilt over my selfishness ate at my conscience for years.
Later, we found out that he did not have celiac, just lactose intolerance. I was relieved. At that point, I had met other people with celiac, and there was more and more food for me to eat.
My parents were careful to keep gluten away from me. My bones strengthened, and I grew up healthy—as healthy as I could, at least.
So why did I say I was having problems in 2021?
As I was following my diet, another disorder was bubbling in the background, preparing for the day it would rear its ugly head. ARFID, which is also known as Avoidant Restrictive Food Intake Disorder. That’s right, I have an eating disorder. Yippee…
Over the years, it had become ingrained in me that there were safe foods that were not, and my brain had been categorizing them for as long as I could remember. But my ARFID had remained benign, unnoticeable, until one fateful day: Dec. 21, 2019.
I rarely vomited in my childhood after I was diagnosed with celiac. Well, that changed that night in 2019 when I puked my guts out into the toilet. I don’t know why I vomited. I now blame that dubious cheese I put on my pasta because my dad ate all of the parmesan my mom grated for dinner.
What I do know is that it was not pleasant. I vomited so hard noodles were coming out of my nose. I smelled rancidly sweet pasta for weeks afterward.
But somehow, life continued as usual. At least, that’s what I thought. However, something had changed. The change was slow, subtle. I wasn’t hungry anymore. Half the time, I would throw away my lunch. I had panic attacks in class, where I felt nauseous and thought I was going to vomit. Every time, my ears rang with the sounds of vomiting, my mouth tasted acidic and sour, and my stomach rolled. But it didn’t happen; it was all in my head. Skipping meals was the only thing that would stop the thoughts, if only temporarily.
Then the pandemic happened.
Excuse my language, but that is where everything went to shit.
My parents worked, and I watched my brother. I would make him lunch but not make any for myself. I did not fully understand why I did this at the time. I thought I was just not hungry—close, but not quite.
No, I was afraid of food. More specifically, I had it in my head that the act of eating was what caused me to vomit. My brain whispered lies into my ear, telling me that all food was now dangerous, not just the food with gluten.
I lost weight rapidly.
Around November 2020, my period stopped and my parents realized we had a massive problem on our hands. My body no longer had nutrients to spare for such an essential bodily function.
My parents began trying to get me to eat. They couldn’t stand by as their eldest child wasted away before their eyes for the second time.
Try as I might, I could not do it.
I was too scared.
I tried anyway, but when I got scared, my body would get so anxious that it would force me to vomit. It was never voluntary.
Thus began the vicious cycle of trying to eat, finally getting a few bites down and vomiting it all up because I got too anxious.
I was a walking corpse by then. Every movement nearly caused me to pass out.
I do not remember the date (February 2021, I think), but I realized I couldn’t do it anymore. I could not keep living in the status quo. I begged my parents to rush me to the hospital. It was my last-ditch effort to escape the pit I had fallen into before I officially gave up and ended it all.
When I first got there, they ran tests on me to see just how much damage my anxiety had caused to my body. My body was completely functional. There was no damage. I just needed to give it some fuel.
They sent me to my primary care physician (who is awesome, by the way), who prescribed me hydroxyzine, which was usually used to treat seasonal allergies but, in my case, was meant to soothe the acute anxiety I was dealing with.
I could eat again.
With the anxiety gone for short bursts, I would eat as much as possible during those brief windows of calm. I didn’t gain any weight back, but I didn’t lose anymore. I could move around the house again.
But I wasn’t out of the woods yet. At that point, I could only eat during those bursts of calm. More needed to be done. But the important thing was this: I had hope again.
I saw a therapist who talked me through my thoughts and kept me sane. My parents were there for me every step, even cooking my favorite meals to make eating easier.
A few months later, I finally got accepted into an outpatient program. I almost didn’t make the cut, but I convinced them I could do it. After around three months of non-stop hard work, I could eat meals without the hydroxyzine. It was a painful time, one where I had to confront my fears over and over again. But I persisted. I remembered the before, and I wanted that again. The therapists there joked that I should be the poster child for their program due to my sheer grit and determination. My family threw a mini party for me when I graduated from the program.
I was free.
I can proudly say that I am now at a healthy weight. I can run, I can walk, and most importantly, I can live.
But my battle is not over. My celiac is still there, still ever-present. My time in university has been at a level of difficulty no student should have to deal with. The Gwinn dining hall is the only place I can get a meal on this campus. Their allergen-free section is still not open for breakfast. I was forced to drop down to two meals a day until I got an accommodation to have a microwave in my dorm room halfway through the winter quarter—an accommodation I had been fighting for since before freshman orientation.
During winter and spring quarter of my freshman year, the quality of said allergen-free section began to go downhill. I attempted to speak to the head of Sodexo, Andrew Chaplain, in the hopes of making the eating situation for people like me better. He did the exact opposite of my suggestions—even though he had asked me for my advice—and made things worse.
Chaplain combined the station with another—one that had gluten in it – at the beginning of my sophomore year. During the fall quarter, I was sick. Many of those days, I was bedridden. Even today, I still live with the consequences of his negligence. I am small, weak, and so, so tired—I get nine to ten hours of sleep each night. I should not be tired, yet I am.
Additionally, when I was an orientation leader at the beginning of the year, Simple Servings was closed that entire weekend. I went hungry most of those days, as there was very little that was safe for me to eat. It forced me to fight for a significantly reduced meal plan to afford groceries, as I could not afford both a meal plan I wouldn’t use as well as the food I needed.
Even if I manage to change things at this university, I will still not stop fighting. Research has shown that children who grow up with celiac are more likely also to have ARFID. I wouldn’t be surprised if other food allergies could also cause similar effects on children. If I had to go through what I went through, it might as well have been for a reason. So, I will give it a reason.
I will tell my story, my experience, in the hopes that I can educate the world on the hidden dangers of medically necessary dietary restrictions, and what can happen if that danger is ignored. I will not stop until no one has to go through what I went through.
