Cold Days and Clear Skies

Celiac.com 07/08/2022 - My name is Mandy and I’m 16 years old. I was diagnosed with celiac disease less than a year ago after having symptoms for about four years. I love playing soccer, hanging out with my friends, listening to Coldplay and Dave Matthews Band, and now, eating!

My eyes are shut tight. I’m relying on my senses of smell, taste, and touch to keep this piece of pizza real, just in case when I open my eyes it’s not there. The crust is warm and moist in my hands. I can feel some rogue strands of cheese dangling over the edge, and droplets of grease and rich tomato sauce fall onto my hand. I open my eyes just for a split second, and the pepperoni seems to smile at me, just waiting for me to enjoy this delicacy. I close my eyes again and slowly start to bring this slice of pizza toward my mouth, which is already watering at the thought of this culinary delight coming into contact with my taste buds—”Mandy!”

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My eyes fly open and I’m face to face with a friend of mine, who’s just exited the lunch line. I guiltily hand over her pizza, which I was holding while she purchased a carton of milk and three luscious looking chocolate chip cookies. My daydream is shattered, and I’m back in the real world, the world of rice pasta, corn flour, and of course, pieces of pizza that beckon unfairly. However, I’m not disappointed. The daydream will be back again. Until then, I have a delicious chocolate fudge brownie to enjoy, made, of course with the oh-so-decadent rice flour.

I may be only 16 years old, and barely starting to make any sort of distinguishable impact on the world around me, but I am already one of the most unique people at my high school. I have the honor of having an immune system that amuses itself by pretending gluten is poison, and intestines that, apparently bored of their mundane life, go along with the joke. Yes, I am a celiac, a proud member of the exclusive club of funky immune systems. A part of me still thinks this is a pretty unfair deal. The same part of me that wants to scream like a maniac as I watch my friends eat. But another part of me, the rational part, thinks that, along with my disease, I am pretty unique—and so is my story.

I experienced the first of what I call celiac attacks when I was 12. That incident seems to have blocked itself from my memory, but I do recall one night during my family’s Cold Days and Clear Skies By Mandy Taylor vacation in Hawaii. I don’t remember what I ate, but I remember the worst stomach pain I have ever had, and being in the bathroom all night. My memory then flash forwards up two years to a soccer practice with my club team. Running along in a scrimmage, I was suddenly stricken with the most intense stomach pain. My brain couldn’t even seem to comprehend this pain, and I lay on the grass dizzy and in a fog. On the way home, I brilliantly ate a chicken quesadilla on, of course a flour tortilla. When I got home, it was all I could do to writhe on my bed. My 14-year-old brain figured this sort of pain must be death. Sitting up on my bed, my bedroom began to spin in fast circles, and I passed out on my floor. Upon waking up, sweaty, the pain was gone, and there was a buzzing in my ears so loud it sounded like there was a bee hive hidden in my shirt. I don’t remember telling my parents what happened. All I know is soon I was in the emergency room, being told the pain was simply that time of the month that every girl has to endure. I figured these doctors knew what they were talking about, and I let it go.

This horrible experience left a huge impression on me, and I would never forget that pain. I only prayed it wouldn’t happen again. But it did. It happened again, and again, and again, until I was afraid to eat anything, afraid to leave the house, afraid to live my life. Each time the waves of pain and dizziness swept over me, I only wanted it to kill me. It seemed to be the only thing to make the pain stop. And each time I woke up from passing out, whether it was lying shivering in the bathroom or huddled in the hallway, the hopelessness I felt was nearly as unbearable as the pain.

An entire year of having these attacks slowly went by. When I was fifteen, I underwent arthroscopic knee surgery for my right knee, as a result of chronic knee pain that had mysteriously developed. The surgeon discovered numerous cracks on the underside of my kneecap. I didn’t know it then, but this too was a result of this disease that was ravaging my body. Along with the knee problem and the stomach pain attacks, I experienced bad headaches almost daily. I had trouble sleeping and focusing on school. My stomach was so bloated that I sometimes appeared pregnant. My vision deteriorated as well. When I was 13 I had been told that I was legally blind in my left eye, and over a year later my once perfect right eye vision rapidly began to join my left. Whatever illness I had, it was taking over my life. I began to lose touch with my best friends, because I was always sick. Some days I would simply go without eating; during one particular severe episode after my knee operation, I lost eleven pounds in a week from living off a bowl of applesauce a day. I needed answers—and fast.

I began to see doctor after doctor. My childhood doctor, having known me since babyhood, figured because I had nearly always been a little sickly (I suffered from sinus infections from infancy on), that this was just another one of those times. I saw her at least four times, and she told me at least four times that my problems were bad cramps and a sensitive stomach.

The doctors at the emergency room also thought it was cramps, and perhaps a little anxiety. After countless blood, stool, and urine tests that seemed to find nothing, I was told I would grow out of it. Everyone else seemed to think I was a hypochondriac, and my hope was fading fast.

One afternoon, while surfing the Internet looking for illnesses with my symptoms, I found a medical message board website. Pure impulse made me post my symptoms on that website, sparking what tiny shreds of hope for a diagnosis I had left. Over the next few days, I read the answers to my post, which told me it sounded like I had Irritable Bowel Syndrome. I was elated, thrilled that I was finally getting some sort of answer. After spending days reading about this syndrome I received an email from someone from the message board site. The email told me it may very well be Irritable Bowel Syndrome—but, had I heard of Celiac disease?

My mom made countless urgent phone calls to my doctor, who finally got me an appointment with a gastroenterologist. The day I walked into this doctor’s office was the day that changed me forever. Right away he seemed to recognize my symptoms as Celiac disease, or Celiac Sprue and wanted to get a definite diagnosis right away. Although this would involve a colonoscopy, not the friendliest of procedures, and small bowel biopsy, I was elated. I could finally have a real diagnosis!

I spent a weekend prepping for the procedures: two fun-filled days of strong laxatives and clear liquids. It would have gotten a little boring, but luckily I had stocked the bathroom with a good supply of magazines. Another day was spent at the hospital, getting a tube shoved down one end and up another. Not fun at the time, but now I look back and realize it was a little amusing. It was all worth it a week later, when we got a call from the doctor. My diagnosis: a severe case of celiac sprue—and so began my new life.

It took several months for the fact to sink in that I could no longer have wheat, oats, rye, malt, and barley, which, of course, are included in seemingly every food, beverage, and sauce on this planet. I felt even sorrier for myself than I had when I was still very sick. It made me want to cry when I looked at pizza or cake, or walked into the mall and smelled the aroma of the world’s best cinnamon rolls. Several months were spent deeply depressed, thinking that my life was over. I couldn’t be around my friends because I couldn’t stop thinking they could eat whatever they wanted. When I was around them, I blew up at them countless times for enjoying their cookies or pasta or numerous other things. Days were spent staring longingly at the box of fettuccine alfredo in our cupboard, and at the package of chocolate muffins on top of the refrigerator. I stifled so many urges to stuff as many hot dogs buns in my mouth as I could. But as the long days passed, something changed. I went a full month without a severe attack. I began to sleep better. I was learning, and along with the learning came living.

My mom and I began to enjoy experimenting with different recipes. We mostly made brownies, trying nearly every gluten-free recipe we could find, and then gorging ourselves on them afterward. One evening, for the first time in months, I enjoyed a delicious plate of rich cheese fettuccine, made with the rice pasta I had mistakenly thought would be disgusting. The pasta was, instead, even better than “normal” pasta—so were the brownies—and pretty soon, so was the cake and the pizza.

Something changed in those days of experimenting and shopping and making discoveries—it was me. Slowly, my view on life began to change. Yes, I had a disease, and yes, it was a very serious one, but there was no way it was going to stop me from enjoying the life I finally had back. I began enjoying the little things again, something that years before I had prided myself on.

I got a few laughs as my friends tried to digest my diagnosis, constantly saying things like “But…pasta doesn’t have wheat in it, right?” and “Well, at least you can have potato bread, since it’s made out of potatoes.” I even got a few “Oh, I know exactly how you feel—I’m on a diet, too.” But gradually the confusion gave way to understanding, and they supported me. So did my parents. My dad by making constant runs to the store to pick up something I was craving, and my mom by spending 24 hours in the kitchen concocting all sorts of meals which always turned out to be surprisingly delicious.

My energy came back, and so did my love for life. My headaches subsided, and my stomach bloat began to look only two months pregnant instead of six or seven. After my last surgical procedure (a laparoscopy to check and see if any of my other organs were scarred) was finally over, my junior year in high school began. It was a new beginning after a horrific summer of pain, surgery, and hopelessness. I played on my school’s varsity soccer team, and began to fully enjoy school again. I was finally healthy and planned on staying that way. I knew because of my entire ordeal, I would never even consider drinking, smoking, or drugs. It had taken so much effort and energy to get healthy—I would do nothing to ruin it.

One afternoon, I sat at my desk at home studying for a math test and craving about a thousand different foods. As I began to feel slowly overwhelmed, I heard a rumbling outside and looked up to see the UPS truck pull up our driveway. It was the gluten-free donuts and hot dog buns I had ordered from a wonderful gluten-free food company. I tore open the box and took my first bite of a rich chocolate donut. It was the smallest thing for most people: a bite of a donut. But the second it took me to take that bite simply made my day.

It’s the little things like that that we celiacs must remember to enjoy. Something important has been taken from us for reasons we’re not sure about—perhaps it’s our genes and a little bad luck. We must learn to fill that void with whatever we can. In a way, we are all blessed. Yeah, this disease isn’t fun, but even though it’s taken many things from my life, it’s given me so much more. I love everything about life now. I love being with my amazing friends and family. I love cold days and clear skies. I love when I look across the road to the car across from me and see the person inside singing along to the same song on the radio I’m listening to. I love putting on clothes warm from the dryer, I love when friends hug me good morning, and I love it when my cat falls off a chair and tries to pretend she meant to all along. In short, I love the little things. I realize that life is not all about everything being perfect—it’s about enjoying what you have—and I have celiac disease to thank for that. I could have been handed a disease that would have ended my life— instead, I was lucky enough to have been handed a disease that would help it to begin again.

©A Personal Touch Publishing, LLC. This article originally appeared in the book A Personal Touch On...™ Celiac Disease