“Gluten-free is so much healthier. I’m doing it to lose weight,” another nameless gluten-free dieter attempts to explain to me.
I suppress an eye roll and heated cheeks. “Well, actually, eating gluten-free doesn’t work that way,” I try to reason, but their blank stares tell me to change the subject.
It was June of 2002.
“I got you a strawberry cheesecake smoothie because I know how much you love cheesecake,” my dad says as he hands me the giant concoction.
“Thanks, Daddy!” I shout with joy, digging into the pale pink mixture.
Less than 30 minutes later, tears are running down my face as I dry-heave into the toilet again. My dad is rubbing my back, and I’m staring through water-stained eyes into the bowl: pale pink—my strawberry cheesecake smoothie. I cry even more. Dad bought this smoothie just for me because he knew how much I’d love it, but my body didn’t care. His feelings must be hurt, and it’s all my fault, but I can’t stop my stomach from lurching. More food wants to leave, but there’s nothing left inside. I can’t remember the last time I felt okay.
It was normal. I thought being sick all the time was what everyone went through. My mom had been sick her entire life. No one could understand her constant battle between health and illness. Friends thought she was merely seeking attention, while baffled doctors didn’t know what to diagnose her with: a continual stomachache; dry, itchy skin; never-ending migraines. My sister would suffer from ear infection after ear infection, high fevers, rashes all over; the doctors thought she was stuck in an abusive relationship with the flu. My brother’s “symptom” was chronic, severe constipation.
My third grade teacher thought I had ADD. Although I tested positive, it was because I was constantly fighting a bitter war against the clouds that filled my head and left me unable to concentrate. Celiac disease takes so long to diagnose because of the multiple symptoms it hides behind.
This thing masked itself into a multitude of symptoms that I unknowingly battled day in and day out. The feeling that my stomach was twisting into a million knots. Death would feel better. Vomiting was the only way to relieve the pain. My body couldn’t digest this foreign substance that was secretly destroying my intestines. As it’s an autoimmune disease, my body would start attacking itself whenever I tried to digest gluten. The villi of my intestines had been flattened, unable to absorb any nutrients, and unwilling to deal with this poisonous substance. Whenever I’d eat gluten, my body would react within the hour.
I couldn’t concentrate. I lived with constant exhaustion and a lack of energy at only eight years old. Whenever I touched something that had gluten (like my beloved Play-doh), my skin would feel inflamed and itchy, so my legs would be torn apart by my nails.
I vividly remember the day that my brother, sister, and I went for our blood tests. I screamed and cried, more afraid of the needles than being told I had a disease. After the torturous poking and prodding was done, we all left the doctor’s office with outstretched arms showing Spongebob Band-Aids. At only eight years old, I couldn’t comprehend what was happening: Why our food changed to brown, mushy blobs of self-proclaimed brown rice pasta instead of our normal stringy, chewy spaghetti. But our bodies changed, and I no longer felt ill all the time.
The first year after being diagnosed was the most challenging. Not only did we move to another town, but we were also grappling with how to go about our new lives. There was no confidence to be found in this new journey. I was eight at the time, my sister was six and my brother four. Mom drilled us in the new ways of life, gluten-free style: No wheat, rye, oats, or barely, and always politely decline food.
August 2003. Wheat, rye, oats, and barley. Wheat, rye, oats, and barley.
It’s the first day of school, and we’re all sitting at lunch. I’ve strategically placed my lunchbox in front of me and my water bottle to the side, hoping to hide my food.
“How come you don’t have bread like us? And, you like the blue Doritos? I like the red ones,” Sarah says in between bites as she points at my mom’s homemade “bread.”
My face turns an ugly shade of crimson, and I shield my food from peering eyes. “This is my lunchmeat, and this is my bread. I can’t store them together or the bread gets mushy. And I can’t eat the red Doritos.”
I pick at the giant clump of tapioca flour that didn’t get mixed properly, then place the turkey and cheese on the bread and go to pick up the sandwich. “How come the bread gets mushy?” questions Sarah.
“I don’t know. It just does.”
“Well, why does your mom have to make it? My mom just buys it from the grocery store.”
With that, the rest of the girls at my table erupt in nods and “Yeah, my mom does that too.”
My face reddens further. “I have Celiac disease. So, I can’t eat wheat, rye, oats, or barley, or I get really sick.”
I pick up my sandwich, but just like every other batch before, the bread crumbles into a million pieces and the meat slides out of my hands.
“My sandwich never does that,” someone says.
Fear ruled my life for many years. I knew how awful it felt to be contaminated, and I was terrified of ever experiencing that pain again. After being gluten-free for several months, my body had begun its journey to healing. I could concentrate; my grades dramatically improved. My skin cleared. I stopped spending so much time in the bathroom. But when I was contaminated, it was worse than when I had been eating gluten 24/7. In 2003, celebrities weren’t gluten-free, so no one understood what that meant.
The first time we went out to eat after beginning our gluten-free lifestyle, we reiterated the need for our food to be gluten-free at least five times. The waiter’s response was, “Yeah, I don’t think that has any sugar in it.” Gluten – not glucose. But that was just the beginning of the evening. After ordering a salad, which became the only food I ordered when eating out (minus the croutons and you’re basically good to go), I sat, anxiously dreading the food yet to be served. I just kept thinking, “He didn’t know what gluten was, so how is our food supposed to be okay?”
When I got to the bottom of my salad, I noticed crumbs, crouton crumbs. After my brain was able to fully comprehend what those tiny crumbs meant, I started crying. My mom quickly summoned the waiter back over to ask why there were crouton crumbs at the bottom of my salad. Apparently, the kitchen had made the salad with croutons originally (on accident), but instead of remaking the salad, they decided it would be easier to just pick the croutons out. Despite the embarrassment I felt at crying in a crowded restaurant, I knew what was going to happen in less than an hour. I spent the rest of the night in the bathroom, vomiting up my last meal and whatever else hadn’t digested, barely getting any sleep, and then I headed to school, exhausted, the next morning.
The Outback incident, as I like to refer to it, was just one of many similar episodes that occurred within the first few years of being gluten-free. For many years, I stopped eating out, and even now, thirteen years later, I only go to restaurants that are strictly gluten-free friendly. When I get my food, I examine it as if I’m studying a foreign substance. I pick around, move the food, looking for a tell-tale sign that what I ordered isn’t gluten-free. When I was younger, I’d ask my dad to taste to make sure it didn’t taste normal—that way I knew it was definitely gluten-free. No gluten-free pasta tastes like “real pasta.” If it got his seal of approval, then I knew I was safe.
Although many years have passed since my family and I went gluten-free, society still doesn’t seem to fully understand Celiac disease or gluten-free living. People would rather latch onto the new “diet craze” or “fad” than face their own health issues. They still don’t understand what gluten is, even if they are claiming to be gluten-free, and they certainly don’t understand the severity of Celiac disease, or that people with this autoimmune disorder have a 40 to 100 percent chance of getting stomach cancer if they continue to eat gluten.
My mom, dad, and sister went out to eat last night at a Japanese restaurant. Like always, they informed the waiter about needing to be gluten-free because of Celiac disease. When they had finished their meal, both my mom and sister found tempura crumbs on the bottom of their bowls and then were told that the peanut sauce they indulged in wasn’t gluten-free. The manager came over, expressed his sincerest apologies, and paid for the meal. The next morning, my sister approached the chef at her university’s cafeteria and asked for a piece of gluten-free bread. After he gave it to her, he said that they were trying to do get everything the gluten-free students “wanted.” She looked at him and politely said, “This is not what I want. This is what I need.”
Photo by theimpulsivebuy CC BY-SA