This Gluten Free Love Story was lovingly submitted by Natasha
My 7 year old daughter, Fiona, has Celiac Disease. She was diagnosed at age 5. Fiona handles her Celiac with such grace and bravery. It by no means defines her and never will. She is completely comfortable asking if something is gluten free, and is always happy to explain it to someone unfamiliar.
In 2010, Fiona had been consistently complaining of stomach aches for a few months. We honestly didn’t think much of it. She would complain, but then play HARD outside for hours. It wasn’t debilitating, and the majority of the time she seemed perfectly fine. (It’s amazing what you live with when it’s all you’ve ever known.) It wasn’t until her kindergarten teacher pulled me aside at school, that I realized we had a genuine issue. Mrs. S said Fiona was complaining EVERY day after lunch. Sometimes it was her stomach, and sometimes her head. EVERY single day.
My Pediatrician was amazing. I conveniently had an appointment for Fiona’s younger brother that week, and brought it up. She immediately asked if she had ever been tested for Celiac. At this point, Fiona (and her twin brother Dashiell for that matter) had never been screened for anything out of the ordinary. Blood work was ran, and it came back a “weak positive” for Celiac. My husband and I started researching online…and freaked out. We got an appointment two days later at The Celiac Disease Center at Columbia in NYC, for a second opinion.
The Doctor at Columbia was AWESOME. So patient with us, and incredibly sweet with Fiona. She ordered more extensive bloodwork, and examined her belly etc. She explained that there is no such thing as a “weak positive”. That is just lab mumbo jumbo. She said its like being pregnant. You either are or you’re not. You can’t just be a little pregnant. Wouldn’t that be interesting?
Anyway, the bloodwork came back more conclusive and an endoscopy was prescribed. She suggested since Fiona wasn’t in pain all the time, we didn’t need to do it immediately, but advised to do it in the next six months. We opted to wait until kindergarten ended. It was already April, why not wait two more months to put our 5 year old through a surgical procedure? In retrospect, this was a silly decision. Oh well, you live and learn, right?
For the most part, the endoscopy was pretty standard. However, it’s PARALYZING to see your kid completely drugged out. On top of that, the nurse had an impossible time finding a vein for Fiona’s IV. She kept stabbing and starting over, and drugged out Fiona would moan. This SUCKED for me. I was already emotional, but this sent me over the edge.
I will never forget it. The Doctor came out when we were in recovery and informed us that on first glance, Fiona had a perfectly healthy intestine. No cobblestone at all. He said she could eat whatever she wanted! He thought maybe the bloodwork indicated Latent Celiac, which we would have to monitor over time. From the hospital, we took starving Fiona to the diner! She had a huge gluten filled Belgian Waffle. INSANE. Well, long story short, the biopsy came back positive. We had caught it super early. Even with all of this, we were still shocked.
Before telling Fiona the results of her procedure, my husband and I met with a nutritionist who specializes in Celiac. I was a HOT MESS. So overwhelmed and sad for my sweet girl. I’m probably the only parent who was crying over the fact that her then 5 year old kid would not be able to drink beer in college. She must have thought I was nuts. It was an invaluable meeting though. Simplified things ten fold.
I worried about EVERYTHING. How she would feel at parties or at school when she couldn’t partake in the holiday celebrations. It’s a lot to take in the beginning. But you know what? Fiona was a ROCKSTAR. I think she felt uncomfortable for so long, that a solution was welcomed. Truthfully, every class has a kid with some kind of ailment. She was just joining that club.
It’s now been two years since the diagnosis. It’s not simple, but it’s completely manageable. As a family of five, it’s harder to be spontaneous food wise. It takes a lot of planning and preparation. There are way worse things in life. We pretty much have it down to a science, and Fiona is doing incredible. I am so proud of her. That’s my Celiac love story in a nutshell. I love my spunky, beautiful, compassionate girl. I LOVE my sweet gluten free Fiona.