In 8th grade, I was given an assignment to write a memoir on an event in our life. I wrote about my life with Celiac Disease. This is my life, in detail, about how I found out, my initial reaction, cheating on my diet, and then regaining the chaos I brought myself in 7th grade.

Taking Control
How I lost, and then took back control, of my own body

My mom and I hopped into Fairway on a unique mission. “Which foods here look good that have gluten in them?” she asked me.

“Let me see,” I said, glancing over some of the options. My eyes drifted from the Sara Lee Pound Cakes to the Entenmann’s Donuts. “I don’t know, maybe some cupcakes? Cornbread? Also, grab those Triscuits, I can snack on them until we get home.”

“Okay,” she said, “what about the flat bagels and challah rolls?”

“Sure,” I responded. “Let’s get one regular and one with raisins.” I put some in our cart and we headed toward the checkout line, without a tub of cream cheese or jar of olives to accompany our gluten feast. It was weird getting food to prepare for a doctor’s visit instead of for dinner.

Six weeks previous, I had gone in for my annual check-up. The visit started the same as it had every other time. The nurse measured my height, took my temperature, and gave me a blood test. It wasn’t until later that my parents told me I was going to have to see another doctor because my pediatrician thought that I was too small for my age. My parents were convinced it was a genetics thing, but my doctor still thought seeing someone else would be best. The only difference between the new appointment and my annual was that I took an even longer blood test, but they gave me a pink Dum-Dum, so I didn’t complain (too much). 

Later in the week, my parents forced me outside on a walk with them. Whenever my parents ask if I want to go out for a walk, I generally say no. But this time they were a whirlwind of energy, and I knew I had no choice in the matter. I laced up my shoes and reached for my faded denim jean jacket. It was a beautiful day, in the 60s and sunny. We ended up going to Central Park and were walking right next to the Reservoir. "Going to that second doctor was a good idea, Rachel," said my dad, his hand resting gently on my back. "The blood test helped us figure out what's going on with you. It turns out you have something called Celiac Disease." I felt my parents staring at me. I think they thought I was gonna freak out or something. But I felt weirdly calm.

"Is that the one where I can't have gluten?" I asked, keeping my eyes on the water.

"Exactly," said my mom, the relief evident in her voice. The real definition is that it’s an autoimmune disease where gluten can damage their small intestine. The only serious thing about finding out if I have Celiac is that I had to take an endoscopy, also known as a doctor jamming a camera down my throat. This was coming up in a couple of days. I stayed calm, probably because I was in denial. I felt confident the doctors were wrong, that “having Celiac” just couldn’t be true. This was the first time I was faced with something that couldn’t just be fixed. But the day that I had my endoscopy I remember too clearly.

That morning, my entire family was up and getting ready by six. I wasn’t allowed to eat anything beforehand. My parents got a taxi and we were inside the hospital by 7. There was music blasting from the TV while we were waiting, distracting me. I tried to focus on the noise from the TV, to avoid thinking about what was going to happen next. My mind was struggling in a tug-of-war, stressing out about the camera going into me and what it would find, while also strangely serene, convinced that I would wake up, with the issue resolved. I was trained to believe that everything was going to work out for the best, unlike some kids, who learn tough lessons early on. 

When they finally called me up, my hands were shaking a little. I felt my heart beating as the doctor took my hand to lead me to a room. I got changed into scrubs. They then took some of my blood and measured me. My mom then followed me into a room with the doctor. The room was white but had probably 10 different machines. One of them was big and had a screen on it. It had 3 poles that stuck out and the whole thing probably weighed 200 pounds. They were all black and grey, but there were so many tools laid out that made my heart beat faster. I looked around, wondering what the next step was. Will this hurt? Will it affect me for the rest of my life? Will I feel different tomorrow and have to skip school? I walked to this bed and laid down on my back. The doctor explained how this was going to go. Okay, that is fine, I thought, a needle will go through me, I will get laughing gas, I am sleeping, a needle goes through my throat, comes out, and I wake up. That’s it. I remember when they gave me the laughing gas, I didn’t feel different. Then, I have no idea what happened. 

I woke up beside my parents 30 minutes later, still floating in a cloud of confusion. My mom said that I was out after a couple of seconds of laughing gas. I felt a little groggy and yearned to go back to bed. Suddenly, I realized that my pants were soaked. I had neglected to go to the bathroom before my endoscopy. Note to self: go to the bathroom before minor surgery next time. I was able to get another pair of scrubs, so my dad didn't have to run home and get me new clothes.

It was a week later when the doctors finally called my parents. I remember they closed the door to their room, but I could still hear whispers. I went to the living room and stood near the windows. The window was a little open, so I felt the cool air as I saw a few people walking. I started getting anxious and went to sit on the couch and held a pillow tightly in my arms. After about ten minutes, my parents came out.

“So, Dr. Pittman told us that you do have Celiac, where you are unable to eat wheat, barley, and rye. So if you have this autoimmune disease, you won’t be able to eat foods like pasta, bread, and pizza.” my dad said.

“Okay,” I responded, looking straight in front of me. While my face was a statue, in my mind, I started going over all of the foods that would disappear from my life: pizza on Fridays, Saturday morning pancakes, even toast with my scrambled eggs.

Over the next couple of months, small things changed. Some of my family's dishes had to be thrown out because gluten was stuck to the bottoms. I learned that I had to plan ahead and occasionally bring my food wherever I was going. My new responsibilities included remembering to bring my gluten-free cupcake to a birthday party, or making sure ahead of time the restaurant I was going to eat at had safe options that I liked. My embarrassment went up when, for example, we went to a diner called Gracie Mews and my dad would always say “Janet, severe gluten allergy” so loudly that people at other tables would hear. If I were to buy something as stupid as Chapstick or toothpaste, I had to make sure that it didn’t have gluten in it.

For three and a half years I obeyed every rule, avoided every bagel, muffin, pizza slice, overstuffed pastrami sandwich. Yet it would all change one crisp fall day in October of 2019. I went out for lunch with my friends at Lunetta, a pizza shop not too far from Salk. It was Friday, which meant all 6 of my friends would get a pizza slice with 5 garlic knots apiece. It was a Friday tradition - head to Lunetta’s for a slice of pizza and five garlic knots apiece. There was something special about Lunetta's on Fridays - the anticipation of the weekend, combined with the giant slices dripping with cheese, was sensory overload. I felt like a can of Diet Coke inundated with Mentos. It was Friday and I had enough of wanting just a bit of a cheese pizza with garlic powder. “CAN I HAVE A TASTE OF YOUR PIZZA? I WILL EVEN SETTLE FOR A GARLIC KNOT!” The words were ready to burst out, but I bit my tongue and didn’t say anything. The entire lunch period, I just ate the lunch that I have had every day since 3rd grade: veggies, an apple, and a sandwich on gluten-free bread. The entire lunch, I kept on looking at their food and imagined what would happen if I indulge myself with a bite. The garlic knots looked right out of a commercial. I got up to throw away my trash just as Kate went to throw away hers. She had 2 garlic knots left, with one crammed in her mouth. I couldn’t hide my curiosity to taste food with gluten. 

“Could I have a small piece of your garlic knot?” I asked, scared of how she might react. There was a long pause.

“But, don’t these have gluten in them?” she asked, looking at me curiously. 

“Yeah, but a small piece wouldn’t do anything. I also haven’t had one in years.” I said. I had had enough. I don’t know if I had convinced myself that what I was doing was smart, or if I was desperate to have a bite. She gave me only a small piece of her garlic knot, as she loves her out-lunch food. I glanced around the restaurant, trying to determine if anyone was watching me. I was a criminal, casing the joint. Then: I took a bite.

 It was like biting into a chewy cloud. I licked the parmesan cheese off my lip and just let the piece of baked dough sit in my mouth, pressed hard against the roof of my mouth. Only one thought crossed my mind and that was that I had Celiac. I told myself it was a bite and it wouldn’t matter. And, for a time, it didn’t.

It had been a week and a half after my first nibble of gluten, and I didn’t feel any different. It was strange. My babysitter, who also has Celiac, would be throwing up at this point - and I felt fine. If I didn’t react, did I even have Celiac? Or maybe eating gluten only makes me not grow as fast? I wasn’t sure, but if I felt fine, why not try another bite? 

As the next Friday came up, I ate my lunch as everyone else ate their pizza and garlic knots. I munched on a yellow pepper, I once again saw Kate getting up as she left her food for a second to throw away a napkin. I got up as well. “Could I by any chance, could I have another piece of your garlic knots,” I asked nervously, looking over at the table to see that she still had three left on her tray. As my voice quavered, I realized that I was on edge about her answer instead of what would happen to me.

“Yes, but a small piece,” she said with a smirk. She went back to the table as I stood right next to the trash can. She came back and broke a piece of the garlic knot and handed it to me. I felt trapped, sneaking a garlic knot and gobbling it down by the garbage. I felt like a criminal, desperately consuming the evidence, and having no one catch me in the action. I popped the whole thing in my mouth. I know it was wrong but I missed this. I never noticed how long I had wanted to have gluten. 

The same thing happened almost every Friday after that. I would secretly consume a small piece of garlic knot. Once, I even had a piece of a donut from Dunkin Donuts. It was a vanilla donut with strawberry frosting, and IT. WAS. AMAZING. What had been a dark, overcast night was suddenly littered with stars. I wanted to get a drink of water but preferred to keep the taste of the donut in my mouth. It was weird how something so small could make me feel so good. I always looked forward to the day that I would have some gluten. Yet every single time, I didn’t feel any different. For a little while, I even forgot I could react to gluten. It was weird because I remember when I was in 4th grade I may have had some gluten because of cross-contamination and I did react. I was very out of it and dizzy. It lasted a couple of days, but at present, my secret consumption of garlic knots and a little bit of doughnut had no noticeable effect on me.

As for my parents, I never told them anything, as they never asked. I did feel a little guilty though - I did not enjoy having this little secret. I thought about it, but I knew they would want me to stop and see a doctor, and a part of me didn’t want to stop eating gluten. I even found myself trying to believe that I didn't have Celiac. Or at a bare minimum, the worst outcome of nibbling on a garlic knot would be that I wouldn't grow as fast - not that I was putting my body in real danger. I know I was stupid to doubt my doctors, but part of it was magical thinking - by simply nibbling away at garlic knots and not telling anyone, maybe I could get away with it? Perhaps they made a mistake and never realized it until 4 years later. But this was the peak of this story, me eating what I want with nothing going wrong. It was a long fall down.

That winter, I went in for another blood test. I have been having blood tests twice every year to check how I am doing on my gluten-free diet. For some reason, I wasn’t nervous about this. I put numbing cream on the inside of my arms because I am a baby. I also drank a lot of water because once I didn’t have any beforehand and the needle had to go in twice because they couldn’t find the vein. When the needle went into my left arm and would stay there for a minute, all I could think about was the gluten-free dessert I would get from By The Way Bakery. It was a tradition that I would get a dessert if I didn’t cry, even though there would sometimes be tears. Everything was fine, even though my arm hurt the entire day. 

A couple of days later, my parents told me that in maybe a month I would probably get another endoscopy. I started to freak out for a couple of minutes, but then, I took a deep breath and successfully put it out of my mind. I don’t know if I thought it just wouldn’t happen, or the endoscopy wouldn’t find anything, but I continued to nibble away at garlic knots in secret. Almost every Friday, like some harmful new tradition, I would have a small piece of a garlic knot. 

The endoscopy never happened that month. I slept every night, free of worry, as these were the last of my garlicky glory days. The problem was one morning, my mom told me, “Oh, you are going to have an endoscopy in a week, on Saturday. Don’t be nervous, it won’t hurt if you remember from last time.” I got scared. All I could think about was being caught. What would my doctor and parents think? Would they understand why I did it? Would I be in trouble? Would they be mad at me for not telling them?

“Yes, I remember that it didn’t hurt,” I said looking down. I was starting to get a little stressed, as I didn’t want my doctors or parents to find out I had been cheating on my diet for a couple of months. 

That Friday, I didn’t have my piece of the garlic knot, even though I knew that it probably wouldn’t have made a difference. I remember Kate asking, “Are you sure you don’t want a piece?” 

I just responded with a simple “No thanks.” But did I want a piece? Yes, of course. I wanted to have a taste of perfection, which was gluten. But I also knew that my doctor would be staring directly into my stomach in a few hours, so it probably wouldn’t be a good idea to have more gluten on top of all that I already had. 

When I came home, I worked on my homework, ate dinner, washed up, and went to bed. My parents wanted me to go to sleep early since I would be waking up at 6:00 to go to the endoscopy. I went to bed, hoping that they wouldn’t notice anything unusual. 

The morning was a big blur. I woke up, got ready, and walked out the door. I was starving, as I wasn’t supposed to eat anything beforehand. We climbed into a taxi, just like the first time. My thoughts were spinning so fast during the taxi ride. Will they know if I had gluten? Will there be any consequences for my actions? Will I ever grow above 5 feet? I went back and forth, persuading myself that having gluten was not that bad, then remembering that I had minimal medical training. When we finally got out of the taxi, we walked into the clinic. It was a little different than before. I took a seat on the light red, blue, and green chair as my parents did the same. The walls were a beige color and it was very plain. There were no pictures hung up, but I could tell that this place was very big, as it had a high ceiling. My dad went up to the front desk and signed me in. I could hear him say “Rachel”. My heart did a couple of skips and I just watched the TV, as it was very quiet. I never actually found out what show the TV was turned into - just endless commercials and the doctor called me in before I could see any more. 

It felt like Groundhog’s Day. I got changed into scrubs. They checked my pulse as well as my height and weight. I was about to be taken into the other room when I asked if I could go to the bathroom before, as I didn’t want to make the same mistake twice. I went in, washed my hands, and just stood for a couple of minutes. I saw this as a good opportunity to waste a little time, put off the inevitable just a few more minutes. I looked at the window and envisioned jumping out as a quick escape. All I could think of was taking a bite of a garlic knot. Even though I may get caught, I regretted nothing - those garlic knots were worth it. They were too good to resist and at least I would keep a vivid memory of this delicious food. I went out and my mom went into the room again. All I knew about the room was that it was kind of dark. The doctor put a needle into my arm, I got the laughing gas, and I was out. 

I woke up in the same place as last time. The room was beige and my parents were by my side. I spent the rest of the day doing nothing. But, I got a gluten-free vanilla cupcake before heading home.

The next couple of days were normal. I went to school, did my homework, and ate the way I was supposed to. Finally, it was the day of “the call”. My parents headed into their room to speak with my doctor about the endoscopy. I couldn’t hear anything. 15 minutes later, my parents came out. My mom went out after the call to have dinner with her friends, so it was just my dad and me. 

He heated leftovers, rice, and chicken, then we both took a seat at the table. 

“Have you ever cheated on your diet?” he asked me. I turned bright red. I reached for the water so that I could cool down. There were only a couple more seconds where I could stall, to come up with an answer that made me sound reasonable. I couldn’t think of anything, so I decided to come clean. 

“Yes, I have, well yeah,” I said with a pile of food in my mouth, looking directly down at my food. I could feel my face heat up again like I was the food that went in the microwave. I looked up at him for a second, to get a sense of how he felt about me cheating. 

“Okay, well I am glad you came clean,” he said. “Your mom didn’t think that you would have cheated, but I had a feeling you might have.” I couldn’t tell what I was more surprised about, the fact that he knew I might have cheated or that he wasn’t or didn’t seem upset. “Dr. Pittman said that your intestines looked damaged. There were only two options: you ate gluten on purpose, or we accidentally gave you gluten,” he said. “What did you eat? Also how much gluten did you have?” I started to think. 

“I had some garlic knots, a piece of a donut, and think that is it,” I said, still stuffing my face with rice. 

“Look, I am not upset,” he said. “I understand why you did it, if I had Celiac and was your age, I would have probably done the same thing.” For some reason, I felt so good hearing this. Maybe it was because it sounded like he wasn’t angry at me or maybe I felt that I wasn’t that stupid for eating gluten, but I felt a lot better. “Your aunt, when she was your age, she ate sugar when she wasn’t supposed to,” said my dad as we both looked directly at each other. My aunt, who has type 1 diabetes, had cheated on her diet as well. I felt a little better knowing that I wasn’t the first person to eat something that I shouldn’t have.

“I cheated multiple times because I didn’t feel different. I didn’t get a reaction or anything,” I said, trying to defend my statement as if I was in court. 

“It’s okay, I am not mad,” he said, very sincerely. “I just want to let you know that you can’t do this anymore. If you continue, you could destroy your body,” he said. I guess this was the reaction to my actions. It scared me to think about what could happen in the future if I kept on secretly eating gluten. I guess, in a way, this conversation was a way for me to move on, and to learn a valuable lesson.

Now in 8th grade, I look back at how I could have prevented this whole situation. The fact that I almost damaged my body permanently is scary to admit or even think of. I know that other teenagers who have Celiac may be struggling with the urge to have gluten. As a kind of penance, I have been working on a website for almost a year now - a teenager’s point of view of Celiac. The goal is for me to tell my story, as well as let kids out there with Celiac know that they aren’t alone. I can also share my favorite Gluten-free food brands, things to be aware of, and more. For example, letting people know that By The Way Bakery is a great place to get gluten-free desserts in New York City. I know that when I found out I had Celiac four years ago, I went in knowing nothing and had my parents do all of the research. I hope that when this website is finished, kids, teenagers, and adults can read it and learn from my mistakes.

Looking back, I understand why I cheated. I know that if I didn’t do it in 7th grade, I would have done it in 8th or 9th. I would always wonder what gluten would taste like. I guess I just wanted to have the food that everyone else was eating because, over the last four years, I always had to have something different. Perhaps cheating was a way of looking back to take back control of my life from a disease that came to dominate my day-to-day life. It has been a year since I cheated, and I have and will be affected by this mistake for the rest of my life as my body is slightly damaged and probably won’t grow as tall as I planned before. But today, I will take control and it will be something different - it’s going to mean embracing this new challenge and keeping myself healthy and strong. While I’d love to return to a simpler time, back before I had to check menus and bring my desserts to parties, that isn’t an option. Life only moves in one direction - and I will make sure I get to go that way for a long time. At least this time, since I have an endoscopy in a couple of weeks, I know that my results will be better than last time.