In honor of the 10 year anniversary of my Celiac Disease diagnosis, I decided to start a blog about my gluten free adventures. I figured the most appropriate way to start my blog would be by sharing my story.
When I was first diagnosed I only knew two people who had Celiac Disease, my family friend and Elizabeth Hasslebeck. Gluten Free wasn’t a fad then. It was rare. No one knew what gluten was and trying to explain it at a restaurant was not easy. And it wasn’t anything like the Jimmy Kimmel Video, because these were waiters serving me food and if they messed up I got sick.
We first noticed something was up in the Winter of 2004. I had just started Middle School. I went from a grade of 100 to 400, I was making new friends, dealing with a new school and new surroundings. I had to wake up an hour earlier for school and carry my books with me as I ran from class to class with only 4 minutes in between. I went through a lot of social changes that were tough and would make most people want to stay home from school, but I had a different reason. I was sick. I had terrible stomach aches all the time, I couldn’t focus, I was tired and I couldn’t pick my head up from the table at breakfast. I would sit down to dinner at night and eat 3 meals yet I weighed only 60 pounds and I was getting thinner by the minute. You could count my ribs and I couldn’t wear pants without cinching them as tight as they could go.
It didn’t take long for us to see a gastroenterologist. However, my doctor was convinced that my symptoms were not Celiac. It took my family friend a few years and six doctors to find out she had Celiac so we convinced the doctor to test me for Celiac. Eight tubes of blood later and almost passing out, the results were in. We went back to the doctor and he said “wow I don’t know what made me think it was Celiac but I guess I was right!” Although we were happy to find an answer, this started a rough few weeks of learning how to control my new diet, and dealing with a doctor who really didn’t know what he was talking about.
The doctor told me I would need an endoscopy to confirm the results, but in order to do so, I needed to start my new gluten free diet immediately. My mom made an appointment to see a nutritionist right away because we had no idea what gluten free meant. The nutritionist told me that I shouldn’t be on a gluten free diet before my endoscopy because my body would repair itself and the endoscopy would be inconclusive. We were so lost because the doctor said one thing and the nutritionist said another. It was the day before Thanksgiving and we were supposed to get on a plane to Florida and we didn’t know whether I should be gluten free or not. My mom found information on a pediatric Celiac doctor out of Baltimore and decided to go out on a whim and email him. He fortunately emailed my mom back immediately to help answer some of our initial questions, including whether or not to go on a gluten free diet before my endoscopy. (The answer was no)
I went for my endoscopy and it was a normal procedure nothing too crazy. The results of my endoscopy came back while we were in Disney World and my doctor decided it was a good idea to inform us of the results through a voicemail. Great doctor. We were in the middle of Disney World and now had to all of a sudden change my diet. By this point we were vaguely familiar with the new diet because of the meeting with the nutritionist before my endoscopy.
We came home and saw my doctor to learn about my a new diagnosis, we start asking him questions. He responded with, “next time you come see me you will know more about Celiac than I do.” My mom was very upset, as any parent would be after finding out their 11 year old has an autoimmune disease.
We ended up making an appointment to see the doctor in Baltimore who helped my mom the day before Thanksgiving. He and his nutritionists had all of the answers to my questions and introduced me to my new lifestyle.
I can’t say that I’ve had Celiac longer than most people and I can’t call myself an expert, but I can say that I’ve been through a lot and I am extremely fortunate to be happy and healthy over 10 years later.
What is Celiac Disease: (the short answer)
Celiac Disease is a genetic autoimmune disease where gluten destroys the lower intestine. Gluten is a protein found in wheat, rye, oats and barley. Gluten destroys the villi in the lower intestine and prohibits nutrients from being properly absorbed into the body.