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Jill's Story

 
11/17/2008

Jill's Story

I'm a 23-year-old newspaper reporter who has been living with Celiac for almost three years. I was diagnosed in July 2004, a week or so after my mother's birthday. My story begins in March '04 during my sophomore year of college. During a party at my boyfriend's apartment, we were drinking. I had not had much to drink at all, maybe four malt beverages, which I sipped at a normal pace, when I ran to the bathroom and began to vomit profusely after the lights tacked on my boyfriend's wall began to move. Pardon my being graphic, but I was leaning over the "porcelain statue", and at one point, I just laid my head down on the seat because I was too weak to stand up. Every time I thought I was done, I just kept vomiting. I ended up going to bed at two in the morning, and fell asleep as soon as I hit the pillow. The day afterward, I couldn't eat. I just felt too sick, sort of like what hangovers do to you. I kept thinking that I shouldn't be hung over, because I didn't drink much.

Starting that week, I began to vomit all my meals, all the time. I threw up so much, only a few embarrassing instances come to mind. Each time before I got sick, it was without warning, almost reflexive in nature. I don't even think my food had a chance to digest. One time, I felt sick and made a beeline for the garbage can in the cafeteria, because I just happened to be close enough to it to reach it in time. All of a sudden, I didn't make it, and vomited on someone's shoe. She turned out to be one of my former Cross Country teammates, and on top of that, I made her already bad day even worse. Another time was when I was at a restaurant with my boyfriend and a friend of mine. I ordered a salad with blue cheese dressing, which I used to love. It's too bad that as soon as it left the plate, it came back up onto it. The waitress saw me, and when I retreated to the bathroom to take care of myself, she got me water and kept asking me if I was ok. I just wanted her to leave me alone. I felt bad, but I was just mortified.

The touch one was coming home for Easter break and getting sick after eating linguini with clam sauce, which my mom now makes gluten free. My dad, who is strict by nature, thought I was bulimic, and told me "some girls can make themselves throw up with their minds." My mother, as far as I can remember, thought I just brought it on myself, that I had some psychological problem I did not tell her about. Unfortunately, these upchucking incidents continued for five months. As time passed, my hair fell out in chunks. I was depressed and anxious, and developed intermittent diarrhea and constipation along with the vomiting. The malnutrition was taking a toll on my short-term memory, and I couldn't remember so many things. I also had several high fevers, at least 102 degrees.

As far as tests go, I had several pregnancy tests (even though I was on birth control), more blood work than you could possibly imagine, a barium swallow, x-rays, internists and physician's assistants feeling my stomach. I was thought to have a hiatal hernia, an h pylori infection (from which my father had recently recovered at the time), and a bladder infection. I was on some sort of medication for the bladder infection, but it caused awful side effects. I also took Aciphex for acid reflux, but unfortunately, I just threw that up.

That summer, I had two jobs. One was at Subway, where I was obviously around gluten all the time, and ate subs for lunch. I quit the job because my memory problems got in the way of my work, and when I went to work at KFC, I was fired because I couldn't focus on anything and could never remember what I learned. On July 2, my mother's birthday, after an internist told me to come back in two weeks we decided to see the gastroenterologist who treated my father's h pylori infection. He gave me a blood test, and took four vials of blood. I had no idea what he was testing for, but, a week later, I got the call. I was in my kitchen when the phone rang. It was my doctor's head nurse. My mom rushed to our garage to listen in, in case I couldn't remember what was being said. "You have Celiac Disease."

Am I doing to die? I thought. Is this cancer? I asked her to spell it. I began writing furiously on a yellow notepad.

She said it was an allergy to gluten, but didn't explain what gluten is. "Here are all the foods you can't eat. Are you ready?"

Could I not be ready?

Pie crusts, cookies, cupcakes, muffins, bread....the list went on and on.

"That's most of what I eat," I said. She then started telling me about my endoscopy, which, in my opinion, is not a good thing to describe in detail to a recently diagnosed person. She told me I would be sedated and a tube would be guided down my throat. I was freaked out. When I got off the phone, I told my mother that I wouldn't be able to have a birthday cake. I also cried and said a tube was going to be shoved down my throat. I retreated to my room, depressed.

Today I can affirm that my mother is my heroine. She's the one who went online and looked up CD. She's the one who bought and let me taste my first slice of rice bread (which I didn't really like back then. haha!). She also found flours for me, and made realize that the same person who couldn't boil water or make jello (that would be me) could learn how to cook. Shortly after starting the GF diet, my hair grew back. I stopped vomiting. I gained weight, and when I trained for Cross Country, I weighed 114 pounds, five pounds more than my supposedly healthy high school weight. I worked with my college's cafeteria to create a menu for myself, and they even went to Wegman's to buy me food, and the store is more than an hour away from them. My boyfriend stuck by me through the whole thing, and I couldn't be happier he did (tears well up as I type this). I graduated in May of 2006 with a bachelor's degree in Communication Studies. As a general assignment reporter for a small local paper, I had the chance to write about the town's Celiac Support Group, to which I belong. Like I did when I wrote the article, I take every chance I can to inform as many people as possible about CD. In small town Western Pennsylvania, it's virtually unknown.

Celiac Disease doesn't just affect the Celiac, it affects the person's family, friends, co-workers, and others with whom they must interact and collaborate with to keep themselves safe, such as restaurant servers, cooks, and grocers. This is why raising awareness is so important. We have to work together to help America catch up with the rest of the world. Even Dr. Peter Green said it; we are behind Europe, Asia, and several other countries in many respects when it comes to Celiac. The more publicity the disease gets, the better things will be. I am proud to be a Celiac. I am healthier than I have ever been, even before my gene became active. People need to realize this is not a food allergy. It is an autoimmune disorder. Surviving, not suffering, is what we should strive for, and it's not impossible.

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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