As Katerina is still a minor, her story is told by her mother, Darleen.
Describe your child’s life prior to diagnosis.
Katerina had a lot of behavioral issues. She couldn’t express what she was feeling, she was two years old and had a speech delay. After speech therapy and other interventions, I did not see behavioral improvements. She then began to eat specific foods such as crackers or white rice. She’d specifically ask for “arrocito” [a Peruvian rice dish]. One morning, she requested pancakes and vomited right after, which I though was odd, but maybe she had eaten them too quickly.
Right after that, vomiting spells began, which would usually happen at around 6:00 PM after picking her up from daycare. She would vomit everything in her stomach. I took her to urgent care and the doctor said it must be the stomach bug, as it was going around town (but I never got sick). The vomiting continued. She was eating less. I took her to the ER and the doctors there said she had the flu. The next day, it happened again. I decided to take her to the same urgent care. The doctor then sent us to the ER for possible intussusception.
After x-rays, it was found she was constipated. She was diagnosed with constipation and sent home. I followed up with her PCP and was brushed off with how the stomach bug was going around.
The same thing continued to happen, and my frustration turned into anger when her daycare called me worried that she was not eating. I called her PCP, they told me to take her to the ER. In the ER, the doctor did not even look at her and discharged her. I called her PCP office again to request a pediatric GI referral and did not receive it after two days. When I called her PCP office again, I was informed that a message was never sent to her provider to begin with. I called her health insurance, filed various grievances and an emergency complaint. They expedited the referral and she was finally able to begin care with a pediatric gastroenterologist.
How did you find out that your child had celiac disease? Did you suspect it beforehand?
I did not suspect she had celiac disease. Her PCP and doctors at the ER would say she had either a stomach bug or the flu (due to being in daycare). I started to question how often one child can get the stomach bug and flu in a month.
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?
Approximately three months between labs and endoscopy scheduling.
Do you believe anything could have sped up your diagnosis?
Being taken seriously by hospital staff and her primary care doctors.
Describe your child’s experience living with celiac disease:
It has been enlightening. Switching to a fully gluten-free diet and educating others on my daughter’s celiac at such a young age has been challenging. Her life has completely changed since being diagnosed. Her GI and behavioral issues have improved greatly, if not completely resolved.
What would a cure mean for you and your child?
Freedom.
My daughter is only 4, and she was diagnosed at the age of 3. I would love for her to enjoy her little school parties without Mommy needing to send in gluten-free replacements. She does not fully understand why she cannot enjoy the same treats her friends do. I always send the gluten-free alternatives of everything, but sometimes she will still say that it’s not fair. And truthfully, it’s not. It breaks my heart.
