Shit Happens: A Celiac Story
Every doctor told me the same thing: It’s all in your head.
They said there was nothing wrong with my stomach that positive thinking couldn’t fix, that I was a severe hypochondriac. My pain was merely an aspect of my anxiety that no amount of antidepressants could fix. I just had to power through and stay strong — and eventually it would all work itself out.
How could a pain that felt so real, that kept me up at night and sent me to the nurse’s office at least once a month, be in my head? I was 15, and I knew my body. I knew the difference between the dull stomachaches that accompanied my panic attacks and the stabbing stomach pain that made me want to curl up in bed for the rest of the day.
Between the ages of 13 and 15, I was at my family physician every few months for a new test. I was tested for anemia, vitamin deficiencies, and even a rare parasite. The inner parts of my elbows were permanently bruised from all the bloodwork. At one point, I had an ultrasound done, although I’m still not sure what they were looking for. All I know was that I had to drink extra water so I would be bloated, and I am forever grateful that I didn’t pee my pants as they waved their magic X-ray wand across my stomach.
When I was 14, the doctor gave me a prescription for a pill to treat Irritable Bowel Syndrome, since that was maybe what I had. They did no formal tests, and I didn’t have any of the key symptoms of IBS. I think they just wanted to get the whiny teen and her over-protective mother out of their office, so they rattled off the first diagnosis they could think of.
Even though everyone from my doctors to my middle school principal said that I was faking my stomachaches, my parents never believed them. I was the kid who sprained her ankle in gymnastics class, then limped around for a few weeks claiming to be fine. So if I said something felt wrong, then something was wrong. My parents had no reason to doubt me. When the IBS medicine didn’t help me, my mom took matters into her own hands. She researched and asked her friends until she finally came up with a diagnosis: Celiac disease.
My parents found me a new doctor, and he asked me to describe my pain. The easy answer was to say “stabbing,” but I already gave that answer to dozens of doctors and nurses. It never got me anywhere, so I decided to get more creative. I lifted my hands and made pinching motions with my thumbs and index fingers. “It’s like there are little men who live in my stomach, and they like to pinch my organs.”
Somehow, that admittedly kooky (and completely honest!) answer led this new doctor to believe me and my mom. When a simple blood-test came back positive for Celiac disease, he sent me to a gastroenterologist for an endoscopy.
I had never gone under anesthesia before, and I was very sure that this endoscopy would kill me. As my 15-year-old brain understood it, a doctor was going to shove a camera down my throat to take pictures and peel off a small piece of the lining of my stomach. I was told the only thing that could go wrong was that a piece of the camera could break off and get stuck in my intestines. The doctor made that sound so normal, as if everyone was walking around with electronics wedged into their guts.
After the endoscopy, I woke up to the sounds of loud beeping from the machine beside my bed. Oh my god, I thought. I died! I actually died!
A nurse ran over and lifted up my right arm. She pulled a large clip out from under the bedsheets and attached it to my index finger. The beeping calmed down and the nurse laughed, “Those things slip off all the time!”
So I wasn’t dead. But the results did come back positive for Celiac disease, which meant no more gluten for me. To my young, Italian-American self, that was just as bad as death. How could I go through life without bread, pasta and pizza?
Going gluten-free was surprisingly easy, and I’m not going to say much about it. The internet has more than enough articles about eliminating gluten from your diet. (Although if anyone is going gluten free for health reasons, I’m only a DM away, and am always willing to talk.)
I had a few mishaps along the way. My university dining hall refused to accommodate my dietary needs, and I spent three years with crumbly bread, dry romaine lettuce, and corn Chex as my only meal options. I don’t know what I would have done if the dorms didn’t have stoves for me to make all the gluten-free pasta I needed. There was one incident while I was studying abroad in England and accidentally consumed gluten. I shit my pants in Harrods (and never told anyone about that, so shhhh!), and spent the next week in the bathroom. But that’s about it. Those are all my zany going-gluten-free stories.
A year after I stopped eating gluten, I started feeling better. I had days go by with zero stomachaches, and for the first time in years, I knew what it meant to feel good. Because I was diagnosed young, there wasn’t much irreparable damage done to my system. “Much” being the key word there.
Celiac disease is an autoimmune disease. Until you start eating gluten-free, your body attacks itself with every bite of bread you take. Those attacks have lasting consequences. For me, those consequences are a digestive system that malfunctions. Last year, there was a brief period of time where I couldn’t digest raw vegetables. I’d eat a salad and be in extreme discomfort for two days. I can’t eat whole tomatoes, and carrots make me vomit. I am lactose-intolerant as a result of Celiac disease, but I stupidly ignore that because I love ice cream. Everything I eat has to be fresh, and if something is even a day past its expiration date, it will make me sick. One drop of gluten (I’m talking literal crumbs!) is enough to bring those little men back to pinch my organs.
I feel like such a nuisance when friends want to go out to eat because I have so many dietary restrictions. If we go with my restaurant pick, I feel guilty for making everyone do what I want, and if we go with their pick, I worry they’ll think I’m being petulant if I can only order a drink and a side salad. I want to be agreeable and easy-going, but my sensitive stomach won’t allow that. I feel like an asshole when I need to ask the employees at my favorite burrito place to change their gloves before making my meal, even though their website said I should request that. I don’t want to make a scene, but I need to be assertive for the sake of my health.
If I’m traveling, my suitcase is mostly full of snacks just in case I can’t get to a grocery store. That includes day trips, when my trusty backpack serves as a pantry. Because I spent so many years with stomachaches, I developed a fear of vomiting. Celiac disease isn’t cured by going gluten-free. It’s there forever, even if you don’t feel it anymore.
I hate being told that I’m lucky for needing to eat gluten-free. The truth is, I am lucky that I had parents who fought my doctors until they found out what was wrong with me. I’m lucky that my doctors figured this out while I was a teen so I don’t have to be sick forever. But I’m not lucky just because there are so many gluten-free options nowadays. I may not be sick, but I do have a disease.
