When Samantha Mackey was diagnosed with celiac disease a few years ago, she was relieved that there was something she could do to finally stop feeling sick.
But the diagnosis also "turns your life upside down," she said.
"I can remember, you know, once standing in a supermarket and just wanting to cry because being so overwhelmed by the amount of effort that goes into just a basic need of groceries,” said Mackey, who lives in Conception Bay South, N.L.
Unless it specifically carried a certified gluten free symbol from Celiac Canada, she had to pore over the list of ingredients on every food item, as many products people often don't associate with gluten — including salad dressings and condiments — contain it.
The other shock, Mackey said, was the higher price tag on gluten-free food.
“Right from the day I was diagnosed, our grocery bill went up significantly and added hundreds of dollars a month to our bill,” she said.
Those prices have been increasing even more along with the rising cost of groceries overall. Celiac Canada says gluten-free products cost between 150 and 500 per cent more than their regular gluten-containing equivalents.
About one per cent of the Canadian population has celiac disease, the association says.
The autoimmune disorder is triggered by gluten, a protein found in wheat, rye and barley grains, said Dr. Ines Pinto-Sanchez, director of the Adult Celiac Clinic at McMaster University.
"For someone with celiac disease, eating even a small quantity of gluten leads to inflammation of the gut lining and various symptoms such as diarrhea, constipation, vomiting, bloating, tiredness, and headaches," said Pinto-Sanchez, who is also an investigator with the Farncombe Family Digestive Health Research Institute at the university.
They can also suffer long-term complications such as nutrient deficiencies, a higher risk of viral infections and pneumonia, increased risk of broken bones and a higher risk of bowel cancer, she said.
"It is essential that people with celiac disease stick to a gluten-free diet, which is medically indicated and not a personal choice," Pinto-Sanchez said.
In a survey Celiac Canada conducted late last year of 7,400 Canadians who must eat gluten-free because of their disorder, almost 93 per cent said they feel the cost of gluten-free food was more expensive than before the pandemic. Of those respondents, more than a third said they have had to adjust their finances to be able to buy the groceries they need, and one per cent have had to turn to food banks.
The federal government's recently tabled budget includes a one-time grocery rebate for "low- and modest-income Canadians" that it says is meant to provide relief for Canadians as prices soar.
That rebate would be up to $153 per adult and $81 per child. Someone who is single could also receive an additional $81. Eligible seniors could receive $225.
But because gluten-free food costs so much more, Celiac Canada is calling for an increased rebate specifically for people with celiac disease in that income bracket.
The association is asking the federal government for a celiac rebate of up to $230 per adult and $122.50 per child, with an extra $122.50 for people who are single.
"This is their medication," said Melissa Secord, executive director of Celiac Canada, of eating gluten-free food. "There is no cure. There's no other treatment."
Because even a small amount of gluten can harm them, people with celiac disease sometimes keep their entire households gluten-free, Secord said.
“It's just too risky to have different meals going on in the house," said Mackey, whose husband and four-year-old daughter also eat gluten-free.
That means even higher grocery bills.
“At this point, I mean, we spend more on groceries than we do our mortgage payments,” Mackey said.
“We're in the position the whole country is (in) dealing with the cost of food being skyrocketed," she said.
"A loaf of (gluten-free) bread is eight to 10 dollars.”
The Canada Revenue Agency does allow people with celiac disease to claim "the incremental costs associated with buying gluten-free food products as a medical expense," its website says.
But doing so is an onerous task with little payout at the end, Secord said.
People must itemize every gluten-free item they buy during the year, compare it to the equivalent regular item and claim the difference.
They must also claim only the portion of the product that the person with celiac disease ate.
The system is "just unworkable for the average Canadian," Secord said, noting that 80 per cent of participants in Celiac Canada survey said they don't claim the benefit.
"It ends up that the average person might get back 30 bucks," she said.
Instead, Celiac Canada is lobbying for a flat tax credit of $1,000 in addition to the grocery rebate.
"The rising cost of living is a challenge for many Canadians and that is why our government is providing targeted, fiscally-responsible, and compassionate support for those who need it most through the one-time Grocery Rebate," said Adrienne Vaupshas, press secretary for Minister of Finance Chrystia Freeland, in an emailed response to The Canadian Press.
This report by The Canadian Press was first published April 20, 2023.
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