If you have Celiac Disease, you probably have a pretty good tale to tell about how you were diagnosed. Most people deal with terrible symptoms for a really long time and are constantly misdiagnosed until one day they realize it was Celiac Disease all along. Usually this comes as a relief. For me, things were a little different.
I was a pretty average kid and teen, I was active, healthy and growing. I never really noticed any of the typical symptoms of Celiac to the extent that most people do. In fact, I discovered I had Celiac when I went to the doctor for something that I thought was completely unrelated. This might be TMI, but in the gluten-free world I don’t think much is. I visited my doctor due to irregular mensuration, which resulted in bloodwork. The doctor ran a Celiac panel, and my IGA count was over 100. So high they could barely even measure it. At the time, I was fourteen, and was a month into my freshman year of high school and my first season of junior varsity soccer. When my parents told me, I think I went into a little bit of shock. Honestly, I had never heard of Celiac before I was diagnosed, and I cried when they explained it to me. I hadn’t seen it coming, and from my perspective, I was an average, healthy teenage with no visible symptoms…why should I have to cut out gluten?
Over the next month or so, I was encouraged to keep gluten in my diet so that the doctors could conduct an endoscopy to confirm the results. I am grateful for this time, as I was able to convince my parents to eat A LOT of pizza, each time with the excuse that soon enough, I would never eat it again. During this period, my attitude shifted and I was almost eager to begin my GF diet. It felt new and exciting, and I thought I was up for the challenge. My endoscopy confirmed my diagnosis on November 23, 2015, and I started my gluten-free diet a week later.
After I started eating gluten-free, it took me a while to actually BE gluten-free. I visited a dietician and learned that I would need a separate toaster, pots, pans, spatulas and shelves from the gluten-eaters in my family. I would need to ask about how food was prepared at restaurants. I probably shouldn’t be eating brownies that a friend made for me, even if they say they are gluten-free. Basically, it was a huge learning curve. You truly don’t realize how much it takes to be 100% gluten-free until you are trying to do it. But going gluten-free made me realize that I actually had been experiencing symptoms, I just hadn’t known that’s what they were. As soon as I went gluten-free, my weekly headaches stopped, my bowel movements were so much more normal, my mensuration normalized, my nails started growing longer, and more. I also realized the stomach pain I had suffered through during middle school was probably not the “stress cramps” I had written it off as.
Even though I felt better physically, going GF as a freshman in high school was not easy. At the beginning, my friends and I would go out to eat at the same places we had always gone, but I would sit and drink water because I didn’t think I could eat anything there. Or I would go to social events with pizza or food that I couldn’t eat without having eaten before, and I would come home and cry and then overeat GF food. I didn’t know how to handle my Celiac in social settings, and I’m still not perfect at it.
Things got a little worse before they got better. I was getting routine bloodwork every 3 months to check and see that my antibody counts were decreasing. After a year, although they had decreased significantly, they were still not at what is considered a healthy level. My doctor believed gluten was still getting in my diet somewhere, so we tried what we thought would work: no eating out at restaurant. Not ever. I did this for an entire year, and because I was 16 and a lot of social events revolved around food, this was hard. I had to sit and watch my friends eat chicken fingers and fries, but I learned to eat before I went, which made it a lot easier. I also learned to bring my own food to things, and to advocate for activities that didn’t involve food. It was a tough experience though, especially considering my antibody counts still didn’t decrease afterwards.
I ended up switching doctors, and my new doctor suggested that I eliminate oats from my diet. Oats themselves are naturally GF, but the manufacturing process creates cross contamination with gluten. There are many brands of certified GF oats, but my doctor wanted me to eliminate ALL oats, even the GF ones. I tried this for three months, and like magic, my antibody counts normalized. After over two years of trying to bring this one small number down, we had finally done it. And honestly, it was a huge relief.
Since then, I have learned how to advocate for myself. I have learned that when it comes to food, I simply have to put my needs first. My friends are incredibly supportive and usually let me choose the restaurants we go to, which I am so grateful for. I also couldn’t have made it through those first few years without my family, who always does everything possibly to ensure that I feel safe and comfortable with whatever I am eating. Strong support systems truly make being diagnosed with Celiac so much easier.
If you are a teenager who has recently been diagnosed, or just anyone who is struggling with a diagnosis, please reach out, I love to talk to people about it. It can feel extremely isolating, but there truly are other people out there going through the same thing.
