By Kim ShiffmanUpdated Apr 30, 2021
Photo: Tony Lanz
“Mama, my arms are too tired to colour.” When three-year-old Alyson uttered those words, her mom, Tera Gariepy, knew it was time to take her to the doctor to finally get some answers.
Gariepy had noticed some unusual but seemingly unrelated symptoms in Alyson for many months, like crankiness, constipation, insatiable hunger and relentless fatigue. “She’d go to bed at 5 p.m., fall asleep instantly, sleep for 12 or 13 hours and wake up in the morning saying she was tired,” says Gariepy, who lives in Edmonton. “I just didn’t think this was normal. I’ve taught preschool, and this was something I’d never seen in kids before.”
Her doctor tested Alyson’s blood for a variety of conditions, and within a few days, Gariepy had her answer: Alyson had celiac disease. The diagnosis was later confirmed with an internal biopsy.
Sort of. Celiac disease is an autoimmune condition in which the lining of the small intestine gets damaged by consuming gluten, a protein found primarily in wheat, rye and barley (so it’s in bread, yes, but also tons of other foods, from soups to soy sauce to salad dressings). That damage is bad news, since the small intestine has a very important job: absorbing nutrients from food. Even the tiniest crumb of bread or slurp of soup can cause harm and trigger a host of unpleasant symptoms.
Alyson’s doctor hadn’t tested for celiac disease sooner because the preschooler didn’t have the typical celiac symptoms. But here’s the problem: Experts say there really aren’t “typical” celiac symptoms anymore. “What we read in textbooks is that the child will come in with diarrhea and irritability, and maybe he isn’t growing well. But the pattern is changing,” says Mohsin Rashid, a paediatric gastroenterologist and professor in the pediatrics department at Dalhousie University in Halifax. Kids are now coming in with any combination of the disease’s long list of seemingly disparate symptoms, which include bowel problems (diarrhea, constipation, vomiting, stomach aches, bloating), rash, irritability, fatigue, inadequate growth, anemia, damage to tooth enamel, migraines and hyperactivity.
Because celiac disease shows up in so many different ways, both kids and adults can end up plagued with problems for years—even decades—before finally getting diagnosed. “Less than 20 percent of children present with classic celiac disease symptoms,” says Rashid. “Family doctors may have a problem cluing in.”
Celiac disease is genetically based, so it’s more common in kids who have a family history of the condition (although Gariepy can’t find it in her or her husband’s family). If a parent has celiac, his or her kids have a 10 percent chance of inheriting the condition, according to Health Canada. Testing for celiac is also recommended for kids with type 1 diabetes, thyroid disease and Down syndrome, since they, too, have a higher risk of having celiac.
But any kid can develop it, even babies (after they’ve ingested gluten for the first time). Once thought of as rare, celiac disease affects one in 133 people in Canada, according to an estimate by the Canadian Celiac Association. And worryingly, it’s becoming more common: “There’s a consensus that the numbers are going up across the country,” says Rashid. “Just like allergic diseases and other autoimmune diseases are on the rise, celiac disease is on the rise.”
From the rich and famous to your next-door neighbour, gluten-free converts abound and are very vocal about the merits of ditching the offending protein, whether or not their health depends on it. A 2013 survey by Udi’s Healthy Foods estimated that a whopping 4.3 million Canadians had gone gluten-free or had reduced gluten in their diets. In 2014, Canadian chefs ranked “gluten-free” the No. 1 menu trend, dethroning quinoa and local food. And you can’t visit a grocery store today without strolling by an ever-widening shelf of gluten-free snacks and baked goods.
Those who avoid gluten based on preference (ahem, trend) swear they feel better when they don’t eat gluten. It may be they have non-celiac gluten sensitivity (see “Celiac? Or just sensitive?” below). But for those who truly have celiac disease, a gluten-free diet is no fad, nor is it optional: It’s the only treatment for the condition, and it has to be followed strictly.
The first step is obvious: Talk to your kid’s doctor. She can order a simple blood test that screens for celiac; in every province except Ontario, the test is free.
But don’t be surprised if she’s dismissive of your concerns. “Celiac is one of those diseases that can masquerade as many things for a long time,” says Calgary paediatrician Janice Heard. “Unless a doctor’s radar is really tuned into celiac, it’s easy to miss.” If you feel strongly about it, push for the blood test, advises Rashid. Or, skip the lab completely and hit up your drugstore. Some pharmacies carry an at-home celiac test.
Here’s what not to do if you suspect celiac disease: cut gluten from your kid’s daily menu. “When you remove gluten from the diet, your body will heal, and when you go for the blood test, it may be falsely negative,” says Rashid. Even after a positive test, kids should continue eating gluten until a procedure called an endoscopy officially confirms the diagnosis. Some parents banish gluten before any testing, just to see how their kid might react, but don’t be tempted. You’ll just have to reintroduce it before testing, and most kids feel much sicker when they eat gluten after having cut it out.
Cutting out gluten is a bit harder than it sounds because the protein hides in so many different foods, like some condiments, chocolate bars and even rice cereal. Just like in families with food allergies, parents and, eventually, kids have to become expert ingredient-label readers, looking out for wheat, barley, rye, oats and triticale (a wheat-rye hybrid).
Events like birthday parties and school pizza lunches become a challenge. My seven-year-old son was diagnosed with celiac last September, and on top of missing some of his favourite treats—bye-bye, Timbits—he’s also still getting used to the social fallout of the diet. “I don’t really like bringing my own food everywhere, because I don’t want any attention,” he tells me.
But usually the positive changes in your kid make the effort worthwhile. “Alyson’s colour improved, the dark circles under her eyes got better, her cranky behaviour improved and she began eating on a normal schedule. She went from having no energy at all to dancing three days a week,” says Gariepy. As for my son, there haven’t been any dramatic changes so far, but it may be too early to see results; it can take a while for the body to heal. Still, the diet is the medicine he needs, since untreated celiac can cause stunted growth, malnutrition and even osteoporosis and cancer.
I can’t sugar-coat it: Getting told your kid has a lifelong disease sucks. But there’s a silver lining when that disease is celiac. In most cases, your kid will not be prescribed any medicines nor scheduled for any surgeries. He’ll simply need to stop eating gluten. It’s not a cure, but it’s a treatment that’s 100 percent effective. Personally, I like those odds.
Even after ruling out celiac disease, some parents remain convinced gluten is the culprit behind their child’s medical or behavioural problems. They may be right. In 2012, international researchers coined the term “non-celiac gluten sensitivity” to describe a condition that mimics celiac disease but is less severe—more like an intolerance. That said, more recent research questions whether the condition is real. Even the world’s foremost experts still aren’t sure, but there’s one thing they do agree on: Parents shouldn’t take gluten out of their kid’s diet without the guidance of their doctor.
Celiac disease is not the same as a wheat allergy. Celiac is a lifelong autoimmune condition in which gluten causes damage to the small intestine. A wheat allergy is an immune response to the protein in wheat and, like all allergies, can sometimes be outgrown.
A version of this article appeared in our January 2016 issue with the headline “Sneaky celiac” p. 24.