Describe your life prior to diagnosis.
[I was] always the same weight, right around 125. Very active. Tennis, coaching, daily steps. Healthy food.
How did you find out that you had celiac disease? Did you suspect it beforehand?
In 2006, I had just turned 40 and started to have horrible stomachaches, nothing ever sounded good. I knew where every bathroom was in the city of Madison, Wisconsin. My doctor in August of 2007 suggested we do an endoscopy to see if I had an ulcer. I look back at photos, and it makes me sad. It was confirmed—no ulcer but instead CELIAC. What the heck is that?
We didn’t know what it was or what it meant. All I knew was that I was sad and thought, “I can never travel again.” My kids were in grade school. I never loved to cook, but what did this mean now? It was overwhelming. Thank goodness my husband was an excellent cook and we started to discover things that were healthy and gluten-free.
How long did it take for you to get diagnosed since your first symptoms?
One year. They say stress may have added to it. We were building a house in 2006 [and] moved in December 2006. I was diagnosed in August of 2007.
Describe your experience living with celiac disease.
It’s not easy. But I’m pretty good at it and feel like I can travel anywhere. I’m pretty particular about where I dine out.
Eventually, by what may be like 2009, gluten-free became more “mainstream” and I could dine out and grocery shop with success. I have traveled to Ireland and Spain and that was “easy.” Someday, I hope to get to Italy. I often “coach” newly diagnosed folks that I hear about through family and friends. I give them encouragement and suggestions and grocery shopping advice. I feel like I’m pretty much a pro when it comes to all things gluten.
Is there anything else you’d like to add to your story?
[A cure] would be life-changing for the good. I am happy and proud of myself for how I’ve handled this. And how I give back to newly diagnosed.
