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A new federal petition has been launched, and calls for a $1,000 refundable tax credit for people with celiac disease, like Betsy Hiebert.

Today, Hiebert owns a certified gluten-free bakery in Winnipeg called Cocoabeans Gluten-Free, but over a decade ago — when she was first diagnosed with celiac disease — she was at a loss.

“It’s really scary because you feel like all your food options have been taken away, like everything that you used to be able to eat safely or you saw it safely is what was actually making you sick,” she said.

The disruption to her social life ate at her.

“You feel kind of left out. I don’t even want to go out and eat. I don’t even want to be out with my friends or my family because it just feels not inclusive, right? You can’t participate fully like you would have, and I think that’s the part that it kind of alienates you,” she said.

Then there was — and is — the astronomical cost.

According to data from Celiac Canada, the price of gluten-free food is 150- to 500-per cent higher than their gluten-containing counterparts.

“My husband can eat gluten, he’s the only one in the family and he buys his sort of rustic loaf of bread for $6.99. Well, my bread, you know, is $11,” Hiebert said as one example, adding the cost of truly gluten-free ingredients are also an expense for her bakery.

“A typical bag of oats, probably 50 pounds, probably sells for 40 bucks, I’m guessing. For us it’s $100. So, we’re paying a premium for that designated celiac safe, gluten-free oat,” she said. “We’re still paying, you know, thousands of dollars above and beyond what a wheat-based bakery would pay.”

The expenses are generated by the rarity of gluten-free certifiable products.

“We grow a lot of oats on the Prairies. But guess what? They come in contact with wheat, rye or barley. Whether it’s at the field level, the farm level — like with harvesting — or even at the terminal. When you bring your oats to market, if they’re not dealt in a gluten-free terminal, they’re going to get cross-contaminated, which means they are no longer safe,” Hiebert said.

She’s hopeful as celiac-friendly diets grow more common, and manufacturing practices align, prices will come down for this medical necessity.

“Because our food has to be gluten-free, a lot of it has to be certified… what can fill the head of a pin can make us sick,” said Christa Dubesky, president of the Canadian Celiac Association (CCA) Manitoba Chapter.

While it certainly is, figuratively, a headache, the symptoms can be much more than that.

“When we do consume, it’s more than just a stomachache. There are 300 documented symptoms of celiac disease, so it’s really a broad spectrum of things that happen,” Dubesky said. “It’s a little bit of a challenge because people don’t think it’s serious.”

“It’s more than a fad.”

While people with celiac disease can claim a Medical Exemption Tax Credit, it’s a complicated and burdensome process, which for many isn’t worth the effort.

“When I was first diagnosed, I collected every receipt for a two-year period and had to go figure out the difference in costs between a regular gluten containing product, and a gluten-free,” said Melanie Bauer, a CCA Manitoba Chapter member.

“The first year, I spent over $2,000 on just trying to buy gluten-free flour and bread and grains. The only time it makes a difference is if it’s more than three per cent of your household income. So, if your household income is $50,000, you have to spend over $1,500 for them to even take into consideration on your income tax.

“After two years of saving all the receipts and envelopes and highlighting everything, my accountant basically told me it wasn’t worth it for me to continue doing it.”

Celiac Canada says only one in five people actually use the program, but many need the extra help.

Bauer said the number of people requesting celiac-friendly hampers from Harvest Manitoba has more than doubled in the past three years.

“When we first started packing, we were doing 50 to 75 (hampers) every couple of months. And now, like I said, we’re up to like the 200 mark,” she said, adding more will be packed for Christmas, and are expected to be completely cleaned out.

Dubesky said, because of the expense, some eat gluten despite its impact to their health, especially if more than one person in their family has celiac disease.

“They’re trying to feed their children gluten-free… because they can only afford it for them. That is just a really horrifying and sad situation,” she said.

It’s a reason why the new federal petition was launched on Oct. 11.

As of Thursday, over 24,000 Canadians signed in support.  Hiebert is one of them, and said it could be a game changer — giving everyone who needs it the opportunity to live well.

“I’m celiac and I have to adhere to a special diet. If I don’t, I become sick. And guess what? I’m going to be an extra burden on health care,” she said.

“Think of all the doctor visits that you can save by eating gluten-free and sticking to that gluten-free diet. Not only will your belly feel better, but your whole body will feel better because it’s just getting the nutrients that you need.

“Having safe food — that is the prescription for gluten-free or for being celiac.”

2:09 Celiac Canada urging Ottawa for better tax relief as gluten-free grocery costs soar