Amanda Nardi

On a beautiful hilltop campus in New England, I started out my college experience like every other bright-eyed freshman.  I played a varsity sport, pledged a sorority, kept my head in my books during the school week, and had countless beers in my hand during the weekend. That is, until I was diagnosed with celiac disease.

My celiac tale begins the summer before I started my junior year, while I was interning for a luxury cosmetic corporation in New York City, and preparing to study in Greece during the fall semester.

Then it hit me.

Nausea. Fainting spells. Stomach pains. Anemia. Liver problems. Itchy skin. Vomiting.

I felt like I was on a commercial, listing off my issues repetitively to doctor after doctor (without the spunky background music, of course). My illness felt all too real, yet it seemed as though no one could give it a name. I visited numerous internists, oncologists, and gastroenterologists before celiac disease was even suggested as a diagnosis.

Celiac disease. As only 1 out of every 133 people are unfortunate enough to be diagnosed with celiac, you probably have never heard the strange sounding word before. Celiac disease is a lifelong, genetic, autoimmune disorder. Intestinal pain and discomfort (among other symptoms) occur in response to the intake of gluten (a binding protein found in wheat, barley, oats, and rye.)  Contrary to popular belief, celiac is not a gluten allergy.   Celiac sufferers are completely intolerant to even the slightest hint of gluten, be it found in a salad dressing, a piece of gum, or a cup of coffee. Celiac disease often leads to damaged villi, which are protrusions in the lining of the small intestine.  The villi’s job is to absorb nutrients in food.  Since damaged villi cannot absorb vitamins and nutrients, malnutrition is inevitable for those who have not been treated.  Celiac disease often goes undiagnosed because it is so rare and because there are over 300 different symptoms of celiac.  When celiac goes untreated, other serious diseases are likely to develop, such as cancer, diabetes, osteoporosis, as well as additional autoimmune diseases.

Celiac disease was not the jump-start I needed to start a carb free diet.  It was a shadow that followed me around, haunting every, itty-bitty aspect of my life.  Celiac made me (and still makes me) cranky, anemic, weak, and prone to migraine headaches, vertigo, over-exhaustion, and unexpected stomach pains. Through a series of endoscopies, a doctor found that my small intestine had been unable to absorb protein for years.  Imagine that! I had only felt ill for two months, yet I had been suffering for years. My doctor advised me to cancel my study abroad plans in Greece because she was unsure if I had further medical complications.  My dreams of living out my own version of The Sisterhood of The Traveling Pants had been buried.  Instead, I drove back up to campus bitter, depressed, and both mentally and physically stressed. I had no choice but to step out of my comfort zone and relearn how to deal with the dining hall, dorm life, party scene, what alcohol I could drink, what restaurants could accommodate me, and even what vitamin supplements and makeup I could trust.  As a beauty fanatic, learning that many of my most prized lip glosses, balms, and sticks contained gluten was devastating.

My first semester back, the dining company on campus referred to me as “a liability in their facilities.” My hands developed bumps whenever beer was spilled on them at a party or whenever I washed my hands with soap in a public bathroom. My heart felt deflated and my head felt heavy with all the changes.  I was on a light course load as suggested by my doctor, yet was still too exhausted to go to all my classes.  Worst of all, I was physically incapable of working out or training with my varsity softball team the entire semester.  My friends would say, “you look fine, lazy.”  I did look fine on the outside, but I was ailing on the inside.  It seemed as though no one could comprehend that celiac is a disease and not an allergy. Heck, I wished I only had an allergy to gluten, like so many people thought. I found myself constantly breaking down and crying because I felt alone.  I considered taking a medical leave of absence, and even applied to transfer to a university in Manhattan so I could be closer to my doctors.  I am proud to stay that I stuck it out, thanks to (gluten free) Hershey bars and Survivor’s “Eye of The Tiger.”

As I write this, it is one year and three days since my diagnosis with Celiac.  I feel like I am a completely different person.  Sure, I still get cranky and have sick spells, but I have learned how to become a stronger, more mature individual because of them.

Celiac has made me realize that I am not invincible.  I am no Batman, and have no emergency bat phone to dial when things don’t go my way in life. Celiac has helped me comprehend that I must always be sensitive of other’s conditions.  Just because a person looks “normal” does not mean that they are physically well.
As a spiritual individual, I feel that God would not have given me celiac if he did not want some greater good to come of it.  I am utterly convinced that I have inherited celiac so that I can advocate for celiac awareness and treatment. So, I am starting right here, right now with you. I’m not saying that you should feel guilty next time you devour a Big Mac topped with creamy, decadent special sauce and a warm sesame seed bun.  I’m merely suggesting you use spoken word, or your twitter, iPhone, or unlimited texting plan to tell a friend about celiac.  That one tiny person that becomes aware of celiac disease will leave a giant footprint of celiac awareness trailing behind her everywhere she goes.