“I have a different story with celiac in that they were looking for other diseases that go along with diabetes,” says her mother, Sandra. “If 10 years went by I think I would have had a different story.”
Kate had been showing signs of digestive distress since she was born, even though her previous blood tests came back negative for celiac. The only definite way of telling celiac disease is through a small intestinal biopsy.
“Looking back you’re knocking your head against the wall, saying ‘I should have known better,’” says Tauckus. “She was still very young so she wasn’t able to verbalize how she was feeling.”
Compared to diabetes, celiac is a relative unknown, but for the Tauckus’ it was the diabetes that went undetected by doctors.
“We went through hell,” says Tauckus. “The regular pediatrician kept sending us home with Tylenol saying she’s just an irritable baby.”
Tauckus lived in Hoboken, N.J., at the time. Her husband has type 1 diabetes, so she knew what to look for. For four-to-five months Kate had extreme thirst, she was losing weight, had a high fever and sores in her mouth that wouldn’t go away. She was diagnosed with coxsackie, a common childhood illness that causes blisters in the mouth.
“Your standard doctor, whether it’s a generalist or a pediatrician, they don’t really know much about these diseases,” she says. “They keep calling [the child] colicky, or she’s just crying a lot, and here this baby is wasting away. I remember breaking down and saying, ‘Just test her blood, I’m positive she is diabetic.’”
“‘Mrs. Tauckus, babies don’t get diabetes,’” she recalls the doctor saying to her.
Tauckus was in the process of moving to Long Island when she brought Kate to a small hospital in Allentown, Pa. When the doctor removed her diaper, it smelled like nail polish remover because she was so high on sugar.
“A resident took one look at her and said, ‘This baby is diabetic,’” she says. “You eventually go into a coma because your body is just poisoned with sugar levels that the kidneys and liver can’t get rid of.”
Having diabetes and celiac made Kate’s blood sugar even harder to keep balanced because her body wasn’t absorbing the nutrients the way it should, which would affect her sugar levels. It also meant Kate had two autoimmune diseases which makes her even more susceptible to getting others.
“Some people’s bodies are predisposed genetically to an autoimmune disaster,” says Tauckus. “Her doctor said she is probably going to be getting something with her thyroid. Now that you have two autoimmune diseases you start looking for some others—nothing is guaranteed but there is a much higher percentage than if she just had diabetes.”
Tauckus had just moved to Long Island. Like Albertelli, it was time to take on the schools.
BACK TO SCHOOL
At her Manhasset elementary school Kate has an aide, a non-medical person who shadows her in the school. She is on a pump that administers her a drip of insulin throughout the day when she is not eating. When she does eat, she not only has to make sure the food is gluten-free, but she has to have the pump adjusted to administer more insulin. To do this she has to go to the nurse’s office multiple times per day.
“With this disease it’s tricky, you’re constantly pulled out of class,” says Tauckus, who realized her daughter was missing more than 30 minutes of class per day going back and forth, a process made more risky by the distance she would have to walk with questionable blood sugar levels. Tauckus asked the district for one of the nurses to go to the classroom.
“You’ve got this little girl, she was 5 years old, the building is very large,” she says. “You’re making her walk to the nurse for this because the aide isn’t licensed.”
Like the Albertellis, the Tauckuses also filed a 504. Their request was denied.
“They keep saying they have to do the minimum to take care of children as far as who has diseases and keep them safe and they’re doing that,” she says.
Tauckus had also presented her case before her school district.
“I was told I’d have to go through the legal route and sue the school, that I’m not the only one with a child with an issue and they’re not here to solve individual issues,” she says. “You know, you have to spend all your money first, then come to us. I can’t seem to get through to the district without having to hire a lawyer. But come back to me when she’s walking down the school stairs when she has a low blood sugar because you’re making this child walk to the nurse constantly and she falls down the stairs. You get away with as much as you can not wearing your seatbelt, but then an accident happens.”
Everyday things like birthday parties at school are a whole other issue.
“I always have a gluten-free cupcake for her, but many times people forget to tell you about it beforehand,” says Tauckus. “It sounds kind of silly, but when you see your own child looking around the room comparing herself, and you know she is, it’s painful. She was coming home upset and crying and then she was lashing out at us, saying ‘It’s not fair, why did you give this to me?’ They don’t know how to express it but it’s definitely being expressed.”
As an athlete, Pinto also had a hard time dealing with the change in diet. When he was diagnosed with celiac he had been playing college football for years.
“I felt really miserable,” he says. “I thought of myself as a sickly person because I wasn’t able to eat pastas and breads, the stuff you would think would bulk you up or the carbs you need to be an athlete.”
Pinto stopped playing sports altogether. He suffered from anxiety and depression, also side effects of celiac, feeling his career was over.