As Eli is still a minor, his story is told by his father Derek.
Describe Eliano’s life prior to diagnosis:
Prior to diagnosis, Eli was underweight for his age. He was in and out of the hospital for years due to dehydration and nausea vomiting. One episode consisted of him passing out on the playground at school which was terrifying for us all. He began throwing up after meals and became lethargic and could not focus at school.
How did you come to suspect celiac disease was to blame for his symptoms?
After macaroni and cheese at a local restaurant, Eli vomited mid-meal. We then began suspecting he was having a reaction to something he was eating.
We brought Eli to his primary care provider who then referred us to a pediatric GI specialist. He gave us the option of treating him with medicine for acid reflux or further testing with endoscopy. We chose to get him tested. This led to a final diagnosis of celiac disease.
How long did it take for Eliano to get diagnosed since his first symptoms and what (if any) challenges did you face along the way?
We first suspected something was wrong about two years prior to diagnosis. We had multiple visits to the primary care provider as well as the hospital and were told nothing was wrong with him. It wasn’t until we showed his weight loss and demanded further testing that we got results.
If we had been taken seriously in the beginning, he could have been tested sooner.
What’s life like now?
It was a struggle initially for us to go gluten-free. We had a lot to learn and felt overwhelmed with the diagnoses. Additionally, Eli felt left out and struggled with not being able to eat the same things as his friends. This was very heartbreaking for a 6-year-old. Also, he was afraid to eat and often would barely eat meals. It breaks our heart to see pictures of him with sunken-in cheeks prior to diagnosis.
He had a love of YouTube and always wanted to be a YouTuber. We created fun with Eden and Eli a YouTube channel for him to cook gluten-free foods and made it exciting to eat gluten-free. It worked! This taught him what foods were safe and he now has a passion for cooking and teaches others in his school and everyone who will listen about celiac disease. He began eating gluten-free and putting on weight. He is now top in his class academically and his whole personality has changed from sullen to happy and cheerful. We have since made it a lifestyle for us all.
