KiraThe Voices of Celiac Disease

“We didn’t know what was wrong with our daughter. Our doctor initially did not think celiac disease because she was so young and because she didn’t have diarrhea.”

As Kira is still a minor, her story is told by her mother, Erica.

Describe life prior to diagnosis:

My daughter, Kira, was born healthy, but shortly before her 2nd birthday, she started vomiting occasionally. Then, at her two year check-up, we learned she had only gained three ounces in the past six months. I told her pediatrician about the vomiting (six times in two months) but he wasn’t too alarmed because many were during or after car rides and we suspected motion sickness. We left the appointment with an agreement to have her add PediaSure to her diet.

Then the vomiting increased. I called the doctor and he set us up for a swallow study. They said she was developmentally fine with eating, so we had an upper GI check to make sure there wasn’t something twisted or blocked. Then a friend who’s a physician assistant suggested maybe she was constipated, so we started giving her Miralax.

Finally, three months after her 2nd birthday, I looked at her and thought she was getting thinner. She had horrible bloating. I took her back to her pediatrician and she had lost a pound in three months. She now weighed 17 pounds. He immediately sent us to a GI specialist. They got her an endoscopy that week and we had a celiac disease diagnosis right away.

Do you believe anything could have sped up Kira’s diagnosis?

Our doctor said he should have paid more attention to her dip on the growth curve. He also did not think it could be celiac disease because she was so young and because she didn’t have diarrhea.

Describe Kira’s experience with living with celiac disease:

Kira is resilient and smart. At age five she is able to talk clearly about her disease. Lately, she has said she wishes she could eat gluten because it sounds delicious, which makes us sad. It’s also been difficult to easily socialize or travel. So much planning has to happen!