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

Hannah Rudderham · CBC News

· Posted: Apr 02, 2025 5:00 AM EDT | Last Updated: 11 minutes ago

When Ana Amezcua's household moved from Mexico to Canada successful 2019, she ne'er anticipated what would soon unfold with her girl René, who was conscionable 5 years old.

"We noticed that within a week she started being ever sick, similar with a batch of fever, she couldn't basal up retired of the bed, she mislaid a batch of weight," said Amezcua, who lives successful Moncton.

"We were going to the ER, but seemingly she had nothing."

That was erstwhile she remembered a TV amusement she had watched that talked astir celiac illness and past everything started to marque sense. Since moving to Canada, the family's fare included much wheat products, which would trigger idiosyncratic who has celiac.

Celiac illness is an autoimmune information that chiefly affects the tiny intestine erstwhile the idiosyncratic ingests gluten, which is recovered successful wheat, barley and rye.

Symptoms disagree from idiosyncratic to person, according to the Celiac Disease Foundation. Some communal symptoms include abdominal pain, cognitive impairment, migraines, fatigue, tegument rash, associated symptom and vomiting.

According to the foundation, celiac tin besides pb to semipermanent wellness conditions, specified arsenic bosom disease, liver failure, tiny bowel cancers and neurological symptoms.

Amezcua began advocating for her girl to get tested for celiac, and erstwhile she got the affirmative result, everything changed.

Eating astatine location was safe. Amezcua, who is simply a certified chef, adapted her cooking to René's needs. 

But erstwhile she was anyplace else, determination was ever the fearfulness that, adjacent if a nutrient appeared to beryllium escaped of gluten, it could inactive beryllium cross-contaminated, which could inactive origin utmost sickness. 

She said restaurants volition often accidental they are celiac safe, but her girl could inactive get sick if her nutrient shares a countertop oregon frying cookware with an point that contains gluten.

Aislynn Slupsky, besides a Moncton resident, has experienced akin challenges since her daughter, Kalina, was diagnosed astatine the property of four. 

She said her household had to get wholly caller pots, pans, a toaster and adjacent dedicated cutlery to guarantee Kalina didn't get sick.

WATCH | 'It didn't adjacent transverse our mind':

And erstwhile Kalina started schoolhouse past year, that came with its ain acceptable of challenges. 

Slupsky found out that Play-Doh contains wheat and her girl wouldn't beryllium capable to enactment successful the people activity, unless she recovered an alternative, due to the fact that it was excessively risky if Kalina were to interaction her rima aft playing. 

It was thing that hadn't crossed her caput until she was confronted with the situation.

While astir radical recognize that radical with celiac can't person breadstuff products, galore non-bread products besides incorporate gluten, specified arsenic soy sauce, immoderate types of vinegar, definite taco seasonings, immoderate bluish oregon cottage cheeses and galore types of crystal cream. 

Slupsky has had to tell Kalina not to instrumentality nutrient from different people, but it's not ever casual to explicate wherefore immoderate kids tin person things and she can't.

"Some adults don't similar to beryllium told what to do, truthful ideate a five-year-old," she said.

"She hasn't truly known immoderate difference, because, you know, she was 4 erstwhile it each started, but you tin decidedly spot the vexation successful her whenever friends get to enactment and she doesn't."

The isolation successful schoolhouse settings tin beryllium one of the hardest parts of having the disease — as was the lawsuit for Amber MacDonald erstwhile she was diagnosed with celiac successful Grade 11.

The 23-year-old Miramichi nonmigratory said that she often felt near retired successful school, as if she were a load connected her schoolhouse and adjacent nine arsenic a whole.

After her diagnosis, MacDonald realized that grabbing a wound astatine the cafeteria oregon sharing a dainty with her classmates was thing she took for granted.

She remembers a time that her schoolhouse had a pancake meal arsenic a mode to promote school spirit.

"To beryllium successful a cafeteria surrounded by the full schoolhouse eating this pancake breakfast and being capable to stock successful this infinitesimal altogether, and being 1 of the lone ones sitting determination without … it was conscionable benignant of an uncomfortable feeling."

MacDonald said she hopes that the cognition of celiac illness continues to grow, truthful radical recognize that being gluten-free isn't conscionable a fad for those who endure from celiac and they aren't being melodramatic erstwhile it comes to cross-contamination. 

"I volition unrecorded with this for the remainder of my life, and the lone mode for maine to unrecorded a beingness that is not successful excruciating symptom is to devour an wholly gluten-free diet," she said.

"Having that 1 crumb oregon eating astatine that 1 edifice that doesn't person large rules and regulations for cross-contamination would genuinely origin maine weeks and weeks and weeks of symptom and perchance semipermanent harm that mightiness origin superior wellness issues down the road."