‘It’s unimaginable’: How almost 3,000 kids waited too long for test results at Montreal hospital

The Montreal Children's Hospital had to turn to an outside laboratory for help in diagnostic testing after thousands of children had to wait too long for celiac testing.

Almost 3,000 children waited too long for diagnostic tests at the Montreal Children’s Hospital to determine if they have celiac disease, according to the hospital ombudsman.

Natasha Contardi registered a complaint with the office of the ombudsman last spring related to delayed lab tests for her daughter.  Doctors at the hospital suspected her four-year-old Teagan Mack had celiac disease. In January of this year, they said she needed to eat gluten for a minimum of 12 weeks, as exposure to gluten is necessary to perform proper diagnostic testing.

Contardi said eating gluten results in her daughter vomiting, severe abdominal discomfort, diarrhea and mood swings. She persevered as the tests were deemed necessary.

“Absolutely, it’s difficult. When she is feeling unwell and she wakes up in the morning and she throws up and she says, ‘Why does my stomach hurt?’ And I say because you are eating food that is making you sick,” Contardi said.

Doctors performed blood tests in March and April of this year. Contardi waited weeks for results, but was finally told the samples could no longer be tested, because they had sat out too long in the laboratory because of a staff shortage. Doctors told her Teagan would have to restart her gluten-rich diet, and undergo testing again.

“I have been angry. I have been sad. I have been insane. Talking about this now brings back all these unhappy places because I have been pushing her to go through these tests,” Contardi said.  “I want to know for sure. If she has celiac she is considered to have a lifelong disability, and the government offers a support system for that. It’s impossible to live within my means to pay for a gluten-free diet because everything is so much more expensive.”

Contardi said turning to the private sector for testing would be challenging financially, so she agreed to put her daughter on a gluten-rich diet throughout the summer and redo the tests at the Children’s Hospital. Meanwhile in May she lodged a formal complaint with the MCH ombudsman.

She received a response to her complaint this week, in a letter dated September 12th.