Natasha Contardi knew her daughter Teagan had a problem with gluten from birth.
“She wasn’t gaining weight properly, and we figured out along the way it was gluten, wheat products, that was not making her well from breast milk,” Contardi said.
She says she put her daughter, now three years old, on a gluten-free diet. She tried introducing some gluten with solid foods, but Teagan never seemed to tolerate it.
Contardi says she was curious to find out if her daughter was simply gluten intolerant, or actually had celiac disease.
“There is a difference between eating gluten-free and eating gluten-free for celiac disease,” Contardi said. “Someone with celiac disease, a crumb of toast getting into her mouth could make her sick for days.”
She said if Teagan had celiac, gluten could physically damage her intestinal lining. But if she were gluten intolerant, it would simply make her uncomfortable.
Finally, this January, Contardi met with a pediatric gastroenterologist at the Montreal Children’s Hospital, and decided to go through with tests for celiac disease. She said Teagan had already tested positive for the celiac gene, and she wanted to confirm it with blood tests, and then an endoscopy if blood tests were inconclusive.
Doctors said her daughter had to have gluten in her system for the blood tests, otherwise, she might have a false negative. So Contardi had to put Teagan through 12 weeks of eating gluten in order to do the blood tests.
“She complains through meals, saying she is not hungry anymore and her tummy hurts and her emotions have been off the charts,” said Contardi. “She has a pale rash on her skin that is itchy; she scratches until it bleeds. She cries having a bowel movement.”
Contardi says Teagan underwent blood tests in February, and then again in March. She says no one called her with results for weeks. So she says she kept calling the children’s hospital and even the ombudsman.
She says she finally received a call, explaining that the tests were never actually done on her daughter’s blood samples, and that they had sat around too long, and were no longer viable, because of an error. She was told her daughter would have to restart the whole process, and go through another 12 weeks of eating gluten again.
“I do not even have the words to get across how physically and emotionally ruined I was when the doctor called me. It was devastating,” Contardi said. “Three full months of suffering for my daughter that did not have to happen.”
The Montreal Children’s Hospital would not comment on Teagan’s specific case for confidentiality reasons. But spokesman Christine Bouthillier said in an email statement that in general, mistakes around testing are rare.
“Other requests are processed within one to three months, depending on the case. Urgent cases are usually seen within 24 hours. Loss of samples is very rare. However, sample processing is delayed for certain tests that are not clinically urgent. The priority of processing is determined by physicians according to the clinical importance of the tests. All samples collected that require a rapid response are processed the same day.”
Bouthillier continued to explain that most tests are conducted at the hospital without incident.
“It is important to note that the laboratory carries out 8 million tests a year, and that late tests represent 0.25% of total analyses,” the email read. “Delays are due in part to staff shortages, both for secretaries to register samples on arrival, and for technologists, who are essential for the analysis of these samples. We understand parents’ legitimate frustration, and encourage them to discuss with their child’s healthcare providers. Additional measures may be put in place to resolve the situation.”
Contardi said she’s just anxious for the testing for her daughter to be completed. And she says it’s important for parents to keep pushing when they don’t hear back from hospitals.
“Don’t stop fighting. Don’t accept long delays and professionals brushing you off and saying it’s no big deal. Take care of your children,” she said.
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