Could your kid have celiac disease?

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“Mom, my arms are too tired to dye.” When three-year-old Alyson said those words, her mother, Tera Gariepy, knew it was about time take her to the doctor to finally get answers.

Gariepy had been noticing some unusual but apparently unrelated symptoms in Alyson for many months, such as: constipationinsatiable hunger unrelenting fatigue. “She went to bed at 5 p.m., fell asleep right away, slept 12 or 13 hours, and woke up in the morning and said she was tired,” says Gariepy, who lives in Edmonton. “I just didn’t think it was normal. I taught pre-school and that was something I had never seen in children.”

Her doctor tested Alyson’s blood for various medical conditions, and within days, Gariepy had her answer: Alyson had celiac disease. The diagnosis was later confirmed by an internal biopsy.

Celiac disease – then you can’t eat bread, right?

Type of. Celiac disease is an autoimmune disease in which the lining of the small intestine is damaged by eating gluten, a protein found primarily in wheat, rye and barley (so in bread, yes, but also in tons of other foods, from soups to soy sauce and salad dressings). This damage is bad news because the small intestine has a very important job: absorbing nutrients from food. Even the smallest crumb of bread or slurping on soup can cause harm and trigger many uncomfortable symptoms.

Alyson’s doctor didn’t get tested for celiac disease earlier because the preschooler didn’t have typical celiac symptoms. But here’s the problem: Experts say there really aren’t any “typical” celiac disease symptoms anymore. “What we read in textbooks is that the child comes to us with diarrhea and irritability and may not be growing well. But the pattern is changing,” says Mohsin Rashid, a pediatric gastroenterologist and professor in the Department of Pediatrics at Dalhousie University in Halifax. Children now come with any combination of the disease’s long list of seemingly incompatible symptoms, including gut problems (diarrhea, constipation, Vomit, stomach painflatulence), rashirritability, fatigue, insufficient growth, anemia, Damage to tooth enamel, migraine and hyperactivity.

Because celiac disease manifests itself in so many different ways, problems can plague both children and adults for years – even decades – before they are finally diagnosed. “Less than 20 percent of children show classic celiac symptoms,” says Rashid. “GPs could have a problem classifying themselves.”

How do I know if my child is at risk for celiac disease?

Celiac disease is genetic, so it’s more common in children who have a family history of the condition (although Gariepy can’t find it in her husband’s or husband’s family). If a parent has celiac disease, his or her children have a 10 percent chance of inheriting the condition, according to Health Canada. Testing for celiac disease is also done for children with type 1 diabetes, thyroid disease, and Down syndromsince they also have an increased risk of celiac disease.

But any child can develop it, even babies (after they first eat gluten). Celiac disease, once thought to be rare, affects one in every 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 rising across the country,” says Rashid. “As allergic diseases and other autoimmune diseases are on the rise, so is celiac disease.”

Isn’t the gluten free thing a fad?

From the rich and famous to your neighbor, many gluten-free converts are out there and are vocal about the benefits of not eating the offending protein, whether their health depends on it or not. A 2013 survey by Udi’s Healthy Foods estimated that a whopping 4.3 million Canadians had become gluten-free or had less gluten in their diet. In 2014, Canadian chefs ranked “gluten-free” as the #1 menu trend, dethroning quinoa and local food. And you can’t visit a grocery store today without strolling past an ever-expanding shelf of gluten-free snacks and baked goods.

Those who avoid gluten by preference (er, trend) swear they feel better when they don’t eat gluten. They may have a non-celiac gluten sensitivity (see “Celiac? Or just sensitive?” below). But for those who really do have celiac disease, a gluten-free diet is neither a fad nor optional: it’s the only treatment for the condition and must be strictly followed.

I think my child may have celiac disease. What now?

The first step is obvious: talk to your child’s doctor. She can order a simple blood test that indicates celiac disease; The test is free in all provinces except Ontario.

But don’t be surprised if it is dismissive of your concerns. “Celiac disease is one of those diseases that can mask a lot of things for a long time,” says Janice Heard, a Calgary-based pediatrician. “Unless a doctor’s radar is really on celiac disease, it’s easy to miss.” If you’re feeling strong, urge for the blood test, Rashid advises. Or, skip the lab entirely and head to your drugstore. Some pharmacies do a home celiac test.

Here’s what not What you should do if you suspect celiac disease: Eliminate gluten from your child’s daily diet. “When you remove gluten from your diet, your body heals, and when you go for a blood test it can be falsely negative,” says Rashid. Even after testing positive, children should continue to eat gluten until a procedure called an endoscopy officially confirms the diagnosis. Some parents ban gluten before any test just to see how their child might react, but don’t be tempted. You just have to reintroduce it before testing, and most kids feel a lot sicker eating gluten after they omit it.

Will my child hate the gluten-free diet?

Giving up gluten is a little trickier than it sounds because the protein hides in so many different foods, like some spices, candy bars, and even rice cereal. Just like in families with food allergies, parents and eventually children need to become expert at reading ingredient labels and looking out for wheat, barley, rye, oats, and triticale (a wheat-rye hybrid).

Events such as birthday parties etc School Pizza Lunch become a challenge. My seven-year-old son was diagnosed with celiac disease last September, and in addition to missing some of his favorite treats — bye, Timbits — he’s also still adjusting to the social consequences of the diet. “I don’t like bringing my own food everywhere because I don’t want attention,” he tells me.

But usually the positive changes in your child make the effort worthwhile. “Alyson’s color improved, the dark circles under her eyes got better, her grumpy behavior improved, and she started eating on a normal schedule. She had no energy and danced three days a week,” says Gariepy. As for my son, there have been no dramatic changes so far, but it may be too early to see results; It can take a while for the body to heal. Still, diet is the medicine he needs, because untreated celiac disease can cause stunted growth, malnutrition, and even osteoporosis and cancer.

I can’t sugarcoat it: Learning that your child has a lifelong illness sucks. But there is a silver lining if that disease is celiac disease. In most cases, no medication will be prescribed for your child and no surgeries will be scheduled. He just needs to stop eating gluten. It’s not a cure, but it’s a treatment that’s 100 percent effective. I personally like these odds.

celiac disease? Or just sensitive?

Even after ruling out celiac disease, some parents remain convinced that gluten is the cause of their child’s medical or behavioral problems. You 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. However, recent research questions whether the condition is real. Even the world’s leading experts aren’t sure yet, but they do agree on one thing: Parents shouldn’t eliminate gluten from their children’s diets without the guidance of their doctor.

Is celiac disease different from a wheat allergy?

Celiac disease is not the same as a wheat allergy. Celiac disease is a lifelong autoimmune disease in which gluten damages the small intestine. A wheat allergy is an immune response to the protein in wheat and, like all allergies, can sometimes be overcome.

A version of this article appeared in our January 2016 issue with the headline “Sneaky Celiac Disease” p. 24.

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