As Cora is a minor, her story is told by her mother, Katryna.
Describe your child’s life prior to diagnosis.
Prior to her diagnosis, Cora she was a fussy baby. While she was happy at times, she was uncomfortable a lot. We thought she had a milk allergy so I cut out dairy when I was nursing and would give her dairy-free formula. Once she turned one and started eating food, she would randomly vomit. She would be sent home from daycare due to being sick and as soon as she got home she was happy and smiley. We could never figure it out. She also wouldn’t want to walk anywhere. She always wanted to be carried and cried all the time. Due to her fussiness, we thought she had ear issues and she ended up getting tubes two times. We tried to do whatever to make her happy and healthy!
Then a couple weeks prior to her diagnosis, we noticed how thin she had become. She had thin little arms and legs but her belly protruded so much. It was always hard as a rock and large. Her eyes sunk into her head and she just looked sick.
We advocated so hard for Cora. We knew something was wrong and we wouldn’t stop until we figured out the issue.
How did you find out that your child had celiac disease? Did you suspect it beforehand?
Cora was diagnosed with celiac disease at 18 months old. Thankfully we had a wonderful pediatrician who ran several tests and took blood work to see what was wrong. She thankfully ran a celiac panel and that was it. It was indeed celiac disease.
While it was extremely stressful changing our entire diet and lifestyles, we’re so thankful it’s just celiac disease and wasn’t cancer, etc.
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 probably took 2–3 months to truly figure out what was going on with Cora. Again we had ear tubes put in, eliminated dairy and tried all the things. However, once she started vomiting on a regular basis and we noticed her belly was protruding, we pushed hard with our pediatrician to figure out what was wrong with Cora.
Cora’s liver enzymes were very high and a bone test came back “abnormal.” They took stomach x-rays and thankfully the pediatrician specifically ran a celiac panel and within a week it was determined that’s what it was.
Do you believe anything could have sped up your child’s diagnosis? If so, please explain:
No, I feel as if we were pretty lucky to get diagnosed so quickly as celiac disease has several different kinds of symptoms.
Describe your experience living with celiac disease:
Not going to lie, when Cora was diagnosed it overwhelmed us so much. I had heard of the gluten-free diet but really had no idea what it was. We did a ton of research, joined Facebook support groups and talked to others with celiac disease.
With time it got easier. We’ve all pretty much adapted to the gluten-free lifestyle. We always come prepared with gluten-free food for our daughter at parties. At school she has her own gluten-free cupcakes ready when there is a birthday party. We also teach Cora to advocate for herself, to not be ashamed of it, to not be afraid to ask, “is this gluten-free?” She is very mature about it. When we go to parties where there is legit nothing for her to eat and she sees everyone eat the yummy looking desserts, she doesn’t complain or cry, she knows that if she eats it, she will get sick and she doesn’t want that.
We try to make the best of it and advocate and teach others about it. Thankfully, we have a huge support group through friends and family who are always trying to learn and accommodate Cora.
What would a cure mean for you?
A cure would be amazing. Cora often asks, “why do I have to be gluten-free?” and sometimes says, “I really want that treat. I’ll just throw up, it’s ok.” It makes me so sad but I remind her it could be so worse and that she’s got this!
A cure would mean the world to Cora. I can only imagine the smile she’d have on her face if we indeed tell her she could eat whatever she wanted!
I asked Cora this question and she said,” I would be sooo excited!”
