Describe your life prior to diagnosis:
As a child, I had a very sensitive stomach and was a super picky eater. My diet focused on the three Ps: pizza, pancakes, and peanut butter and jelly sandwiches—on whole wheat bread. I could never pinpoint why my stomach hurt sometimes. In high school, I developed a rash on the back of my legs and lower back.
How did you come to know (or suspect) that you have celiac disease?
My sophomore year of college, I got a stomach bug and from then on, everything got worse. One day, two bites of an English muffin gave me a horrible stomachache. From then on, I was constantly sick in the bathroom with diarrhea, gas, gastroesophageal reflux disease (GERD), or an upset stomach. I lost weight, I was pale and malnourished, and I knew something was going on.
If you were diagnosed, who made the diagnosis?
I began seeing a gastroenterologist who prescribed me antacids for my digestive upset, and later did an endoscopy and blood test. One morning before class, they called and told me I had “this thing called celiac disease,” and that I couldn’t eat any of my favorite foods for the rest of my life.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took less than six months from when my constant stomach problems began. I was grateful to be diagnosed quickly because the average time for a diagnosis is 6–10 years.
Truthfully, my real problems began after my diagnosis, when I did not receive any follow-up care besides, “Just don’t eat gluten.” Left to my own devices, I had to teach myself how to dine out in a restaurant, avoid cross-contact, travel, cook, speak up, and become my own best advocate. Afterward, I spent years dealing with multiple health complications due to not having the proper education about celiac disease, including small intestinal bacterial overgrowth (twice), IBS-D, sciatica, and now, osteopenia.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I don’t think so—as soon as I started having constant symptoms, I was very lucky to be seen quickly by a gastroenterologist who ran the right tests and got me an answer.
Unfortunately, the follow-up was what was lacking, and I spent years learning how to do things the wrong way with celiac disease. It’s why I created my website and coaching services to help others avoid my mistakes so they can travel, dine out, and live a full life with celiac disease.
Describe your experience with living with celiac disease:
I live a full life with celiac disease and it’s become my actual career to help others do the same. While having celiac disease, I’ve hiked in Peru, New Zealand, and Nepal, lived abroad in Spain, gotten married, backpacked around the world, and created over 100 tasty gluten-free recipes.
I truly don’t feel like I miss out on life experiences because I remember what it was like in the beginning of my diagnosis when everything felt hard, and I constantly struggled to find answers, support, and community. Today, I have multiple clients, run a support group, and have a social media following of thousands of other people with celiac disease I help on a regular basis. That’s empowering.
Is there anything else you’d like to add to your story?
I have a full write-up of my celiac diagnosis story on my website.