It’s Still Celiac Awareness Month!

By Rachel Sircy

For readers who missed my last post, May is Celiac Awareness Month. It’s the time of year when celiacs around the globe try to spread the word about what celiac disease is and what we can do about it. This post, I’m going to continue my celiac story. I think that one of the best ways that I can help spread the word about celiac disease is to make it personal. So, instead of a lecture, I’m going to tell you a story. (P.S. If you missed the first part of this story, check out my post from earlier this month).

The story of my life as a celiac is both complicated and simple. The simple version of it is that I was sick for most of my life with celiac disease. The complicated part was living with a disease I’d never heard of and that none of my doctors had even considered as a possibility. As a child, I was first diagnosed with a vitamin deficiency at age two when my hair started to fall out. Even taking daily vitamins, I struggled with borderline anemia. By the time I was in my senior year of high school, extreme fatigue, memory problems, and joint pain plagued me and got worse and worse. My grades, which had always been good, began to plummet, and though I’d always been a little bit spacey, I started to become dangerous. I had trouble staying awake for long periods of time and began to fall asleep in class. When driving I know I was worse than most drunk drivers. I frequently ran red lights, not even realizing what I’d done until it was too late. Oftentimes I would misjudge curves in the road, and I accidentally ramped more than one sidewalk. I would also make these misjudgments while walking and would slam into almost every door frame that I passed through, sometimes hard enough to actually stop me in my tracks. My friends in my last year of high school (and some teachers) began to tease and then seriously ask me about getting tested for ADD. I had trouble holding a steady conversation for more than a few minutes. By the time I got to school each day, I couldn’t remember what I’d eaten for breakfast. One girl nicknamed me Blondie – not because I was truly blonde, but because she felt it captured the Out-to-Lunchness of my personality.

I had all of the problems listed above, but I never had any serious gastric symptoms until I was around 19 years old and had left the country to study abroad for my sophomore year of college. During that school year, I began having horrible stomach pain after every meal. It was as if hundreds of gas bubbles were trapped in my stomach, and it seemed that these painful gas bubbles were churning up fiery stomach acid that gave me heartburn I could feel in my ears. All this made me nauseated and yet, I couldn’t throw up if I wanted to. I don’t know why, but in my case, instead of vomiting and diarrhea, my gastrointestinal tract seemed to simply shut down. In short, by the time I finally broke down and went to the gastroenterologist at age 21, I thought I might have an ulcer or be dying of stomach cancer.

I had an IgA blood test done at age 21 on my first visit to the gastroenterologist. I was truly blessed to find a doctor familiar with celiac disease. When he first came into the room to see me, he asked a few questions, poked my stomach a little and said, “I’m pretty sure I know what’s wrong with you.” He hit the nail on the head. My endoscopy was scheduled for a few days after my 22nd birthday and it was the best gift I’d ever gotten. My doctor saw me again after the results came in; he read the report in front of me and when he looked up at me he said, “Yeah, I thought so, You look like a celiac.”  He explained to me that my intestinal lining, which should look like a shag carpet, looked like a tile floor. My case, he said, was fairly advanced for someone my age. I was told to go on a gluten free diet. I had no idea what this meant. I’d never heard of gluten before that doctor’s visit, and it seemed to me that everyone in that office had lost their marbles. How on earth could whole wheat bread – the staff of life – be bad for anyone? I wasn’t a health nut, but I’d been raised to believe in the virtue of brown bread and whole grain spaghetti. A nurse came in and opened a huge book called “The Gluten Free Bible” and told me I needed to throw away my toaster. I felt like I’d been kidnapped by people from an alternate dimension where people wore their clothes backwards and no one in her right mind would think of eating whole grains. I was completely and utterly overwhelmed by my diagnosis.

That’s where I’ll end my story for now. I’m going to write one more entry detailing my foray into the world of gluten free eating to finish up my Celiac Awareness Month posts.

The good news is that there are so many advances in this area of distress that I think celiacs should take heart. There is currently a bill getting ready to make it’s way through the federal government compelling the National Institutes of Health to pursue a cure and research into the autoimmune and genetic factors of celiac disease. If you or someone you know have celiac disease, it’s worth your while to get on the Celiac Disease Foundation’s mailing list. They do send a lot of emails, particularly this time of year, but they do keep you up to date on the latest research and general goings-on in the ever-widening world of gluten intolerance.  Additionally, they give you real ideas on how to make a contribution. Recently, because of their notifications, I was able to send an email to Lindsey Graham asking for his support for a bill that has recently gone before the Senate requiring drug and supplement manufacturers to label gluten in their products.

Infographic_Celiac Disease at a Glance

Medicine is an often overlooked source of hidden gluten.  Prescription and over-the-counter medications can contain gluten, and sometimes celiacs who observe strict diets can fail to get better because they are still consuming gluten through their medications. FYI, these are some places you should look for gluten if you are intolerant: medicine (pills and liquids), lip balm, toothpaste and mouthwash – in short, anything you put in or near your mouth needs to be screened for gluten.

Happy gluten free living to all my allergic and intolerant peeps out there!