Kendra Nielsam’s personal celiac story
My main symptom was an unexplained occasional rash on my elbows for about a year, but I also had years of unexplained iron-deficiency anemia and elevated liver enzymes. When I tried to see a doctor about the rash, it would inevitably disappear. I happened to get allergy shots one day when it was really bad though and the nurse was able to get me in to see the allergist about the rash. He thought it might be psoriasis. When I saw another doctor a few weeks later, she seemed to agree with that conclusion. A few months later my primary care physician had me do some routine blood work. She had just started to screen all her new patients to see if they had a reaction to gluten and sure enough, I did. My primary care doctor also sent me to a dermatologist who did a biopsy of the rash and confirmed it was gluten related. A recent genetic screen confirmed I have the Celiac genes.
I've been gluten free since February 2009.
When my doctor first told me to try a gluten free diet, based on the blood test, I thought it would be impossible. At the time, I didn't know my rash could be related to gluten, so I didn't really feel like I had any symptoms and it seemed like a gluten free diet would just be something annoying to do that wouldn't really benefit me at all. My doctor advised me to try going gluten free for a few months and see how I felt. I think if she'd told me it was a permanent diet, I would have really freaked out. A few months seemed like forever.
It took me about a week to work up the mental strength to start the diet. My husband calls me a ‘carb-ivore’. I love cereal, bread, and cookies. I was really worried about breakfast and my training. Breakfast is my favorite meal of the day. I wasn't sure how I was going to survive without oatmeal. I emailed my college roommate, Emma, (who was diagnosed with celiac after we graduated) asking her what I could possibly eat for breakfast. When she told me she eats toast, I realized life might not be entirely over. Mostly I was really sad about cookies - specifically ‘greenie stickums’ - a cookie recipe that's been in my family for a while. I wasn't quite sure if life could be enjoyable without ‘greenie stickums’. As for training, I realized that I could no longer eat the sports bars I usually relied on. Nutrition is basically the fourth sport in triathlon, and I had to start from scratch figuring out what gluten free options worked for me. I bought tons of different gluten free sports bars, gels, and drink mixes and had a lot of trial and error before I found out what I liked and what would keep me going through a long workout.
When I started the gluten free diet, my husband was actually living away in school. We only saw each other on the weekends, and we had fallen into the habit of going out to restaurants when we saw each other. Suddenly I felt like I had a major defect. Something was wrong with me that meant we couldn't enjoy a Sunday breakfast at a nearby bakery anymore. Also my husband has always been the cook, and with him away at school during the week, I'd planned to live on frozen meals and take out meals. Instead I had to start cooking. It was a big adjustment, but it turns out, after years of avoiding the kitchen, cooking isn't so bad.
It only took a few weeks of being gluten free to notice some changes. I didn't feel tired all the time anymore. When I got the dermatologist biopsy results, I was actually excited. It seemed like this gluten free thing might actually be good for me. After a month or two of being gluten free, I realized my asthma had really improved too. I was going on long runs without my inhaler. It's not like my asthma has disappeared, but it seems more controlled on a gluten free diet.
Kendra is one of the NFCA's Athletes for Awareness. Learn more about Kendra in her first post for the NFCA, "Athlete for Awareness: me!"