On May 5, Avromi and Susan Gorokhov took their daughter to a food fair where vendors offered doughnuts, cookies, and other pastries. The Wicked Gluten Free Expo offered the food that their first-grader, who has celiac disease, could eat.
The father then shared her experience on Instagram as the Kosher Celiac Kid, a lively profile where the first-grader cooks, bakes, shops, and samples kosher food that is acceptable in her limited diet. I initially had my doubts on whether it was ideal to have a young child on social media, but with Gorokhov’s experience as a content creator for an elementary school in Brooklyn and summer camps on Long Island where he works, along with freelance gigs, he spoke about navigating social media while motivating his daughter.
“This is a child who loves pizza, bread, breaded chicken nuggets, pretzels, and pasta. Basically, a lover of carbs, like every child,” he said. “Having the doctor say ‘no more pizza’ was devastating to her, since most kids’ birthdays revolve around pizza. It means no more pizza days at school and so on. However, we are blessed. We’re blessed with so much out there.”
In her first four years, the Gorokhovs did not know what was bothering their daughter. “Since she was a baby, she’s been a picky eater. Last year, in kindergarten, she was getting sick left and right. We went to see an allergist who found an autoimmune disease in her stomach.” They then went to pediatric gastroenterologist Dr. Tuvia A. Marciano, who specializes in celiac disease.
“She had missed a month of school. When other children were in color, she was gray. She couldn’t go to Bagel Town and Sauly’s Pizza,” referring to West Hempstead’s two bread-related eateries. “But she is a trooper.” As an alternative, Sunflower Bakery has a separate gluten-free bakery that provides for his daughter.
Celiac disease means that even the smallest amount of gluten can cause the small intestine not to absorb nutrients. When someone is diagnosed with celiac disease, his or her blood is tested and then an endoscopy is scheduled. Once diagnosed for celiac disease through both of these measures, the patient then meets with a nutritionist to discuss the proper diet plan. With celiac disease, ingredients must be checked on all products, including toothpaste and lipstick, among nonedible products.
Motivated to stop throwing up, she gave up pizza and pasta, and relied on a jello-and-water-only diet for a day ahead of her colonoscopy. “In the beginning it was hard to find out what food she would like. We joined WhatsApp groups to find kosher gluten-free brands. Trader Joe’s has kosher gluten-free pizza dough and she’s making it at home. It’s adorable and she is motivated to eat better.”
Making videos and posting photos, tagging companies that make kosher gluten-free products gives her confidence. “She knows exactly what foods to look for.”
Gorokhov noted that there are many children who have food allergies that can cause irritation at least, and death at worst. But gastrointestinal issues have been a part of the human condition from time immemorial, and prior to innovations in medical research, people were unaware of them. “Past generations didn’t have ways of checking. My grandmother has stomach issues. Celiac is common among Ashkenazim, somebody is bound to be a carrier. That’s why my mother went to have a bunch of tests done.”
Gorokhov said that his experience in testing and identifying his daughter’s celiac disease taught him a lot, and he hopes that her Instagram account –@kosher_celiac_kid – can serve as a resource for other families.
He noted that, for security, her name and community do not appear, nor are there posts about topics outside of celiac disease. It is very focused. “May is Celiac Awareness Month, and there are so many resources being shared right now. The child may not like everything, but there are many products. In the past, she didn’t like fish; now she eats it with gluten-free bread crumbs from the Pesach shelf.”
By Sergey Kadinsky
