As Mia is still a minor, her story is told by her mother, Allison.
Describe your child’s life prior to diagnosis.
Mia was a typically developing child, meeting all of her milestones on time and always happy and full of energy! Right around her second birthday, she began to lose weight rapidly, falling off her growth curve. Her symptoms increased further from there. She began to vomit occasionally, and then it became weekly. She seemed to always be sick and very fatigued, taking three hour naps and sleeping for 14+ hours. Our daycare providers even pointed out their concerns about her lack of energy, as she had begun to lay on the floor and play and no longer was able to recite numbers or the alphabet. Her belly was so large and the rest of her body was so small, that no clothes seemed to fit her. As her parents, we were absolutely at a loss, as we had lost our once happy and healthy girl.
How did you find out that your child had celiac disease? Did you suspect it beforehand?
After several doctors visits to our pediatrician, he eventually ordered a set of labs covering a wide range of diagnoses. Last minute, he added on the celiac disease panel since she was over the age of two. When the labs came back, her TTGA was 1000x normal and her IgA was double the high end of the normal range. We had not even thought about celiac disease.
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?
From symptoms to diagnosis, it probably took around six months. The most challenging part was knowing that something wasn’t right, but it took her getting very sick for a provider to dive deeper. Additionally, we got her celiac disease labs back and had to wait three weeks to get in to see a pediatric gastroenterologist. During that waiting period, we were instructed to continue to give her gluten until they could evaluate her. It was horrible!
Describe your child’s experience living with celiac disease:
Mia has done an awesome job with her diagnosis and finding foods that she likes! We are in awe of how easily she has been able to transition to her gluten-free life. The most difficult part is eating out at restaurants, and social gatherings, trying our best to make sure she doesn’t feel left out and can still enjoy these things in her life.
What would a cure mean for you and your child?
A cure would mean complete freedom for Mia, and a return to complete spontaneity.
Is there anything else you’d like to add to your story?
Mia is doing great now, and is a completely different kiddo with her gluten-free lifestyle. She likes to tell everyone she meets that her motto is: “gluten-free for me!”
