My name is Matthew, and I am a regular 15 year-old from Chicago. If I had to pick a defining aspect of my life, it would be my anaphylactic food allergy. When I was seven months old, I was fed my first taste of mixed baby cereal. After only a few bites, my face and entire body turned bright red. At the time, my parents had no clue as to why I suddenly turned red and broke out in full body hives.
So they called the doctor and explained my symptoms: Redness, hives, etc. The doctor thought for a moment, and then concluded that it might be a food allergy. "A food allergy?" my parents questioned. To my parents, the notion of a food allergy was completely foreign. "A food allergy to what?" my parents asked. After examining the ingredients in the baby cereal, the doctor suggested that I stay away from wheat, rye, oats and barley for a while. Wheat of all things. My parents had no idea that wheat was literally everywhere -- root beer, Pringles, Captain Crunch, brownies, Cheerios, Oreos, Kit Kats, Crunch bars, hand cream, shampoo, beer and sunblock -- wheat was EVER PRESENT. From that night on, my life, (and my diet) were changed forever.
Living life with an anaphylactic food allergy from the age of seven months old, has been a tremendous burden. At birthday parties, my mom made me my own cupcake. At school, I had my own cubby for safe snacks and I was the only kid in the whole school with permission to bring lunch from home. At overnight camp, I had a special chef to cook for me to ensure that not even a single crumb would touch my food. At restaurants my parents would interrogate the manager and then the chef like Claire Danes does in Homeland. Not even a crumb of wheat could be near my food. The reactions were scary, and often intense. I broke out into full body hives, swollen lips and I had a lot of trouble breathing. My life would flash before my eyes. There was risk of death.
I have had a few bad reactions in my life. At Thanksgiving in 2008, I had an egg roll that was apparently gluten-free... I think you can guess what happened next. I was administered an EpiPen by my dad, rushed to the hospital by my uncle Joe, a doctor, who was driving as if he were Indiana Jones, dodging cars left and right. I stayed at the hospital that night, and was thankfully okay.
Because I had reactions, a sense of fear always accompanied me wherever I went. Whether I was out with my friends, at dinner with my family or at a sleepover, the stress of having a reaction was always with me. I never let that stress take me over though, which is why I can face the real world.
That stress, and that yearning to try all of the delicious foods that other kids could try, was always very irritating to me. I asked, "Why can't I just have what they are having?" Like any other person, I wanted all of the delicious-looking food that had wheat: cupcakes, pizza, pasta, Oreos, cookies, doughnuts, etc. I also wanted to rid myself of the fear of being cross-contaminated at a restaurant and then be rushed to the hospital. Oftentimes, I would go to my room and cry. I had everything. Well, almost everything. I had an amazing family, friends, a terrific education, technology and shelter. What I did not have was a sense of safety around food, so pretty much everywhere, I would repeatedly think to myself, "Will I get a reaction this time? What if the EpiPen doesn't work? What if we can't get to the hospital on time? WHEN WILL THIS ALLERGY GO AWAY?"
In May of 2012, my parents heard about a doctor out at Stanford in California by the name of Kari Nadeau who was doing trials for kids with multiple allergies using oral-immunotherapy. Initially, they thought this was insane. There was no way that a cure could actually be happening. A few days later, my dad found a way to reach the doctor out at Stanford, and was completely mesmerized by the conversation. The words that he was hearing coming out of the doctor's mouth sounded surreal, too good to be true. It was as if the food allergy messiah had finally come! My dad asked the doctor to hold on for a moment, so that he could get my mom to join the call. My dad asked her to join the call, and my mother said in a frustrated tone, "Bill, if it's just another doctor, I don't have time right now. I can look into it later." Only this time, it wasn't "just another doctor." My dad insisted, so she joined the call. My mom was completely blown away, and could not believe what she was hearing. Everything sounded too good to believe.
Since September of 2012, I have been enrolled in an FDA-approved phase 1 multi-allergen food allergy trial in California at Stanford University. In July of 2012, I went out to California for blood testing. It proved what we already knew to be true. I was very highly allergic to wheat, rye, oats and barley. I was now qualified to be in the study. In July 2012, I reacted to 65 milligrams of wheat, only a couple crumbs. Nine months later into the study, I was eating up to 8,000 milligrams of wheat, thanks to my doctor, Kari Nadeau. Mini-Oreos, ice-cream sandwiches, Sprinkles cupcakes, pita bread, flatbread, pizza, Chicago's famous Wiener Circle fries, more cupcakes, licorice, Nature Valley bars, cookies and more. All of the foods that people take for granted are the foods that I get to enjoy now too. That's right. My medicine is Oreos.
Fifteen million Americans suffer from food allergies. I am one of 35 people that are being desensitized (Dr. Nadeau doesn't use the term cured yet). All of that fear has been taken away. I no longer have to eat first by myself at home before a party without my friends. I AM NOW FREE FROM CROSS-CONTAMINATION! The stress is gone. My cries of despair have turned into cries of hope! I am now safe. Safe from that world of anaphylactic food allergies. Normal.
My mother started a blog called the "Gluten-Free Guy," or, "Gluten Freek," (I think you can assume who the guy is). She has compiled all of the marvelous gluten-free recipes that she has invented throughout the years: Crunchy chicken, cupcakes, Pop Tarts, strawberry shortcake, pasta, pizza, cookies, pecan sticky rolls, fried chicken, etc. When my mom began her blog in 2008 she wrote, "I am hopeful that somewhere in the universe there is a brilliant doctor or scientist who will someday find a cure for this life threatening and life-altering allergy." Four years later, that doctor magically appeared. You can find this AMAZING WEBSITE at: www.glutenfreeguy.com.
It truly is ironic though. Just as I am starting to eat gluten, the world is trying to eat less of it...
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