ZacThe Voices of Celiac Disease

“We always say, ‘friends over food’ and try to focus on the fun we are having instead of the food.”

A photo of Zac smiling. He's holding a football.

As Zac is a minor, his story is told by his mother, Kelly.

Describe your child’s life prior to diagnosis:

Zac was a typical, happy baby! He was born a few days early and weighed 7 lb 11 oz. He met all of his monthly milestones. Zac loved to crawl, laugh at his big brother, wave high, and was always on the move!

At around 9 or 10 months old, he started solid foods, including gluten. He loved eating pancakes and waffles for breakfast.

How did you come to know (or suspect) that your child has celiac disease?

Zac was diagnosed with celiac disease one month after his first birthday.

About a month prior to his first birthday, he started vomiting and having diarrhea occasionally, and he would nap a lot. At the time we thought it was just hand, foot, and mouth disease, since his older brother JJ had it at the time.

At his 12-month wellness visit, he had lost weight from his 9-month check-in. I told the doctor about his symptoms and she didn’t like the look of his distended (bloated) belly, so she sent us to the ER for an ultrasound and bloodwork. Everything came back normal, but our pediatrician wanted to see us again in two weeks.

We came back once two weeks had passed, and found he was still losing weight; Zac was down to 17 lb. This time they sent us to the ER at the Children’s Hospital of Philadelphia (CHOP) for a full work up. More blood tests and more ultrasounds. Everything came back normal again. Eventually they did the blood test for celiac disease and Zac’s numbers were off the charts. So they admitted him and ordered an endoscopy, which confirmed the blood work as positive for celiac disease.

Who made the diagnosis?

The team at CHOP Gastroenterology, specifically Dr. Vera De Matos Maillard, MD.

How long did it take for your child to get diagnosed since their first symptoms and what (if any) challenges did you face along the way?

It took about two months until Zac was officially diagnosed with celiac disease. I had asked his pediatrician if it could be celiac disease since my aunt and two cousins have it and she said “No, he’s too young for celiac disease.” We all learned the hard way that this is NOT true.

Do you believe anything could have sped up your child’s diagnosis? If so, please explain:

No, I think we were in good hands at CHOP and they diagnosed him pretty quickly. I know some people say it takes months and you have to continue to eat gluten. But since Zac was only 17 lb and 12 months old they rushed his endoscopy.

Describe your child’s experience with living with celiac disease:

Zac’s a normal, happy 5 year old boy in kindergarten. He loves playing baseball and basketball and hanging out with his friends.

I think the hardest part for him is going to birthday parties and family gatherings where he can’t have all the same things as his friends. We always say, “friends over food” and try to focus on the fun we are having instead of the food. We’re always prepared with his own cupcake or cake and all of our friends and family make such an effort to make him feel special and included, but sometimes it’s just hard. We find it hard as a family to be spontaneous—we can’t just find a place to go out to eat really quickly or stop for a bite. All of our meals have to be planned and we got to a lot of the same places because we know they are safe for people with celiac disease.

Is there anything else you’d like to add to your story?

You can be diagnosed with celiac disease at ANY age!