Albertelli—who had her own stomach issues for many years—and her husband Robert started researching the disease and realized there was a genetic component. As a rule, every first-degree relative is supposed to be tested when a child is diagnosed with celiac.
Albertelli tested positive for the disease. Even more shocking, her husband, who didn’t seem to have any telltale symptoms, was diagnosed as well. Since one in 133 people have celiac, the chances that they would both have the disease is 1 in 18,000.
At this point, the whole family went gluten-free, except the Albertellis’ younger son Andrew, who didn’t test positive for celiac but carries the gene.
“The doctor said, ‘Just wait and watch how [a gluten-free diet] is going to change your daughter’s personality,’” says Albertelli. “Her whole persona was different.”
A gluten-free diet is the only treatment for celiac. Even still, the disease never actually goes away, but avoiding gluten will relieve its symptoms in most cases.
But avoiding gluten can be challenging, and cross-contamination is a serious possibility.
If a piece of bread is only dunked in a pot of sauce that a celiac will eat or if a knife used to cut a doughnut is then used to slice gluten-free bread, there is enough gluten transferred in each instance to cause damage that can lead to problems like cancer later in life for someone with a gluten intolerance. This makes school lunch not only tricky, but dangerous. The Albertellis asked the school to let Amanda use a separate microwave to avoid cross-contamination and also so she could eat something other than a spoiled sandwich for lunch, since gluten-free bread doesn’t hold up well throughout the day.
The Albertellis filed a 504—a modification under the federal civil rights law when a child needs special accommodations at school.
Named for Section 504 of the Rehabilitation Act of 1973, 504 programs provide services for students who have a physical or mental impairment limiting at least one major life activity. For instance, a student with a broken arm is considered handicapped and can request someone carry his or her books until the cast comes off.
The Albertellis set up a meeting with the board of education, came in with a doctor’s note and explained what celiac was to school administrators who hadn’t heard of the disease before.
“All I needed was a medical diagnosis—which I had,” says Albertelli.
But administrators said they wanted the district doctor to be part of the meeting via telephone conference. Albertelli agreed.
“When you’re in front of people who know nothing about it, you feel like a physician holds some weight,” says Albertelli. “He said he was a gastroenterologist and he said he had patients with celiac disease.”
He also said their requests were totally unnecessary and that cross-contamination was not an issue at all.
“It was a nightmare; he was outrageous, nasty and bullying,” she says. “He not only belittled us, but he didn’t know anything about celiac—and I looked like a crazy parent.”
Albertelli did some research and couldn’t find anything that said a doctor should be present at these meetings.
“I follow the rules, get a medical diagnosis, write a letter to ask for the meeting,” she says. “Now you’re changing the rules on me?”
But Albertelli’s situation was nothing new.
“Randi’s example of the doctor is not an unusual situation,” says Dr. Peter Green, director of the Celiac Disease Center at Columbia University Medical Center. “The rate of diagnosis of celiac in this country is increasing, but it is way, way behind the rest of the world.”
Green mentions Australia, where gluten-free foods are displayed in the front of supermarkets and asking for a gluten-free slice of pizza is nothing out of the norm. But here in the United States, Green says those with celiac disease can see many doctors over a period of up to 11 years before they are accurately diagnosed and treated, while 97 percent of celiac cases go undiagnosed.
Albertelli wrote a letter to the board of education explaining this. A new doctor was called in and she received a letter of apology.
“They were so nervous about what to do because this was the first time they were ever asked to do something like this,” says Albertelli. “I guess we scared them in a way. That’s what happens the first time for anything.”
Kathy, a lunch aide in a Suffolk County elementary school, believes this is true among most schools, including her own.
“[Schools] are behind in this area,” says Kathy. “I won’t say it’s done to harm the child, which unfortunately in the end it does, but there are parents who take advantage of the system, so [the school] feels if they do for one they have to do for all, and they can’t do for all,” she says, referring to parents in her district who had asked for special treatment, like having their kids leave for lunch early or keeping separate food in the school cafeteria merely for convenience. “But in the case of a student who needs special treatment for health reasons, it’s not right to deny them.”
After months of jumping through hoops, Amanda can now use a separate microwave.
Meanwhile, Sandra Tauckus was fighting a different battle.
Like Pinto, 7-year-old Kate Tauckus, of Manhasset, was diagnosed with celiac after being diagnosed, at 14 months, with another autoimmune disease—type 1 diabetes. Three years later, celiac came up in one of her standard blood tests.