Living with celiac disease: When a single crumb can hurt you

CBC

02-04-2025

When Ana Amezcua's family moved from Mexico to Canada in 2019, she never anticipated what would soon unfold with her daughter René, who was just five years old.
"We noticed that within a week she started being always sick, like with a lot of fever, she couldn't stand up out of the bed, she lost a lot of weight," said Amezcua, who lives in Moncton.
"We were going to the ER, but apparently she had nothing."
That was when she remembered a TV show she had watched that talked about celiac disease and then everything started to make sense. Since moving to Canada, the family's diet included more wheat products, which would trigger someone who has celiac.
Celiac disease is an autoimmune condition that primarily affects the small intestine when the person ingests gluten, which is found in wheat, barley and rye.
Symptoms differ from person to person, according to the Celiac Disease Foundation. Some common symptoms include abdominal pain, cognitive impairment, migraines, fatigue, skin rash, joint pain and vomiting.
According to the foundation, celiac can also lead to long-term health conditions, such as heart disease, liver failure, small bowel cancers and neurological symptoms.
Amezcua began advocating for her daughter to get tested for celiac, and when she got the positive result, everything changed.
Eating at home was safe. Amezcua, who is a certified chef, adapted her cooking to René's needs.
But when she was anywhere else, there was always the fear that, even if a food appeared to be free of gluten, it could still be cross-contaminated, which could still cause extreme sickness.
She said restaurants will often say they are celiac safe, but her daughter could still get sick if her food shares a countertop or frying pan with an item that contains gluten.
Aislynn Slupsky, also a Moncton resident, has experienced similar challenges since her daughter, Kalina, was diagnosed at the age of four.
She said her family had to get entirely new pots, pans, a toaster and even dedicated cutlery to ensure Kalina didn't get sick.
WATCH | 'It didn't even cross our mind':
Even Play-Doh is off limits for kids with celiac disease
1 day ago
Duration 0:46
And when Kalina started school last year, that came with its own set of challenges.
Slupsky found out that Play-Doh contains wheat and her daughter wouldn't be able to participate in the class activity, unless she found an alternative, because it was too risky if Kalina were to touch her mouth after playing.
It was something that hadn't crossed her mind until she was confronted with the situation.
While most people understand that people with celiac can't have bread products, many non-bread products also contain gluten, such as soy sauce, some types of vinegar, certain taco seasonings, some blue or cottage cheeses and many types of ice cream.
Slupsky has had to tell Kalina not to take food from other people, but it's not always easy to explain why some kids can have things and she can't.
"Some adults don't like to be told what to do, so imagine a five-year-old," she said.
"She hasn't really known any difference, because, you know, she was four when it all started, but you can definitely see the frustration in her whenever friends get to participate and she doesn't."
The isolation in school settings can be one of the hardest parts of having the disease — as was the case for Amber MacDonald when she was diagnosed with celiac in Grade 11.
The 23-year-old Miramichi resident said that she often felt left out in school, as if she were a burden on her school and even society as a whole.
After her diagnosis, MacDonald realized that grabbing a bite at the cafeteria or sharing a treat with her classmates was something she took for granted.
She remembers a day that her school had a pancake breakfast as a way to promote school spirit.
"To sit in a cafeteria surrounded by the entire school eating this pancake breakfast and being able to share in this moment altogether, and being one of the only ones sitting there without … it was just kind of an uncomfortable feeling."
MacDonald said she hopes that the knowledge of celiac disease continues to grow, so people realize that being gluten-free isn't just a fad for those who suffer from celiac and they aren't being dramatic when it comes to cross-contamination.
"I will live with this for the rest of my life, and the only way for me to live a life that is not in excruciating pain is to eat an entirely gluten-free diet," she said.
"Having that one crumb or eating at that one restaurant that doesn't have great rules and regulations for cross-contamination would genuinely cause me weeks and weeks and weeks of pain and potentially long-term damage that might cause serious health issues down the road."