As Leah is a minor, her story is told by a parent.
Describe your child’s life prior to diagnosis.
Our daughter Leah never struggled with digestive issues, but she was always the smallest in her school classes. Everyone used to comment on how “cute” and “petite” she was, but I remember looking back at photos and thinking she was always a good two to three inches shorter than children her own age. From the age of 15 months, every doctor’s visit consisted of us trying to figure out how to help our daughter grow.
How did you find out that your child had celiac disease? Did you suspect it beforehand?
It wasn’t until her four-year checkup that our new pediatrician thought to have her tested. For what I wasn’t sure. Blood work and bone scans came back normal. Good news. Of course, I thought she just had my genes and was a late bloomer, but as she continued to fall off the growth chart her doctor wasn’t convinced. So we retested her a year later.
I remember those days vividly. Her sweet innocence in the car ride to the doctor’s as she endured another round of blood work and the naivety of us as parents thinking maybe she just needed supplements. The call from the endocrinologist came in. They were 99% positive she had celiac disease.
Of course, they can’t tell you for sure because to be officially diagnosed with celiac disease in the US you also need to have an endoscopy. Luckily, we were able to get scheduled for an endoscopy shortly after her blood work. The initial look showed no damage, but we would have to wait for the biopsy results. I asked her pediatric gastroenterologist if the blood work could be wrong, and he said it was highly unlikely, but possible. I prayed. Two days later it was official: my sweet, vibrant five-year-old had celiac disease.
Describe you and your child’s experience living with celiac disease:
As a mom you can never be prepared for the pain that comes with seeing your child hurting and sick. Just weeks earlier I had never heard of celiac disease and now we were in the middle of a complete unknown. The phone call with the GI doctor ended with, “just go gluten-free and she’ll be fine.” We were lost and confused. What’s gluten? How did she get this? Could we have done something differently to prevent this? As far as we knew, no one on either side of the family had a history of celiac disease, but here we were. By some grace we were connected to another mom whose daughter has celiac disease and she talked us through some of those initial days.
Leah is a bright, kind, happy kid. She doesn’t fully understand her disease other than knowing she must avoid “gluten.” It’s impacted so many moments of her life and we are just a year into her diagnosis. She rarely shows her frustration or sadness over her disease, but there are times we can see it: when she has to bring different food to a friend’s birthday; when we go out to eat; when a friend who doesn’t know offers her a snack she can’t have; or when there’s something fun at the grocery store she can’t have. Those moments of sadness are enough to break a parent. And I worry that when she gets older these moments will bother her more or will make her feel different from her friends. It’s hard to ask so much of her but she bravely takes it on.
Is there anything else you’d like to add to your child’s story?
It’s so frustrating to see that there is so much more that can be done to help those with celiac disease live a less encumbered life while we wait for a cure, whether it’s expanding our food labeling laws to include all forms of gluten or educating restaurants on safe food preparation. We rely on our family, friends and her school to keep her safe. Without our village this journey would be so much harder.
We will get through this and we will be there for her through thick and thin. We will work to provide her with all the necessary tools and thoughts to ensure that this disease will not define her.
