When Ashley Hickey’s seven-year-old son Alex was diagnosed with celiac disease last month, she knew she had to revamp the entire family’s diet to become a gluten-free household.
Celiac is a genetic autoimmune disease that causes people to get sick when they consume wheat, rye or barley.
Having celiac herself, Hickey is familiar with the risk of cross-contamination and the extra cost of specialty ingredients. But when the Amherst, N.S., woman crunched the numbers from her grocery bills during the month of June, even she was shocked by the total of $2,600.
“I actually said to my husband, wow, I can’t believe how expensive this is. I didn’t realize my grocery bill was that bad. And I said we need to get a rice flour farm or something because this is insane,” said Hickey.
She said those expenses didn’t include drinks, treats, toiletries or restaurants — it was just the basic food budget.
To better understand what some have to shell out at a grocery store chain to buy gluten free, the CBC’s Angela MacIvor joins Heather Yule who — along with her two children — has celiac disease. They compare the cost of seven common groceries and their gluten-free equivalents.
According to Celiac Canada, gluten-free products cost 200 to 500 per cent more than food with gluten. Executive director Melissa Secord said gluten-free products have traditionally cost about 150 per cent more but supply issues during the pandemic widened the price gap.
“There are certain standards that manufacturers have to follow to keep it safe as well as the ingredients themselves because of the complexity, so they’re more expensive,” she said.
Heather Yule of Bedford, N.S., has celiac, as do her two teenage daughters.
“It’s not like we’re doing this for a fad,” she said. “It is like having a prescription drug. Our prescription is gluten-free food. How come we don’t get better cost savings for that? Because it adds up.”
Hickey agrees. Although she tries to make everything from scratch and buys in bulk, she is working 70 to 80 hours a week running her software company to offset the high cost of food.
In addition, she inputs every gluten-free item she purchases into a spreadsheet for an annual tax refund.
“Not only am I spending all this time making these mixes, shopping, researching, finding products, I then have to play secretary at night every time I go to the grocery store and log what I’ve bought in a spreadsheet,” she said.
“I would love to see — as it is in other countries — celiac disease be classified as a disability and eligible for the Canadian disability tax credit to give us all a little bit more money back in our wallets every month.”
Secord said there is an “incremental medical claim” that amounts to about $30 to $50 for most people. Celiac Canada is pushing for a flat medical tax claim of $1,000 per year for everyone who has the disease.
“The system that they’ve created actually doesn’t work. It’s cumbersome, almost inaccessible and really gives zero relief to people. So we’re trying to offer some solutions that are very doable and we’re having some success and some acknowledgment,” said Secord.
In an email statement, the Department of Finance said it “welcomes all suggestions on how to better support Canadians, including those with gluten intolerances and celiac disease.”
However, the department said it would be “inappropriate to speculate on any potential or prospective change.”
Secord said people living on a low income are suffering the most. Not only are Canadians on social assistance ineligible for the existing tax credit but very few food banks carry gluten-free items, she said.
That also doesn’t sit well with Yule.
“We have food security in our house but there’s a lot who don’t and it is a medical requirement. And there’s people eating gluten who have no choice because they cannot afford the gluten-free versions,” she said.
One bright side is that more restaurants are offering gluten-free options on their menu.
At East Coast Smokehouse in Middle Sackville, N.S., owner Paula Drew said 71 per cent of the meals she sells are gluten-free.
“I’m trying to help those [with celiac] and raise awareness to other people in the business as well to be able to do these things,” she said.
“It’s really not that difficult. Just have one dedicated fryer, make sure that you have gluten-free breads and an area teaching people how to handle things properly and in a safe manner so there’s no cross-contamination.”
She said items with gluten-free bread or pasta are $3 extra. Otherwise, the cost is the same.
“I love dealing with people with celiac disease. They’re so thankful. They’re grateful,” said Drew.
Secord said people living with celiac are appreciative because worrying about food is a constant stress.
“It’s not just bread and pasta. It’s in cereals. It’s in dressings and sauces and even dusted on deli meats,” she said. “They have to be extremely, extremely vigilant.”