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The long and difficult road to diagnosing celiac disease in children

Last Updated Nov 24, 2020 at 9:04 am EDT

It’s known as the clinical chameleon and it’s triggered by gluten, which is a popular ingredient found in many of the foods we eat.

Celiac disease is a common auto-immune digestive disorder, yet the road to diagnosis can take many years and Ontario is the only province that does not cover the cost of the screening test.

“My three-year-old’s feet didn’t grow for a long time. She was always tired and constantly complained about her muscles hurting,” Chantal Hunt said, noting these were just some the symptoms her daughter was suffering.

“She had diarrhea and headaches; she also had a big round hard belly that was strange.”

Hunt told CityNews her journey through the healthcare system to find out what was making her daughter sick was frustrating and unacceptable.

“I felt like I was just getting band-aid solutions, constantly band aid solutions,” she explained.

Four doctors, and more than three years later, Hunt said her daughter was finally diagnosed with celiac disease.

“Everything changed. Her feet finally grew, she was thriving” she said.

When people with celiac disease consume gluten, it creates an immune response and causes damage to the small intestine, blocking the body’s ability to absorb nutrients. Classic symptoms include diarrhea, constipation, vomiting, fatigue, iron deficiency, headaches, and bloating. In children symptoms also include stunted growth and failure to thrive. If left untreated this can lead to infertility, osteoporosis, an increased risk of certain cancers and there is a link to depression and anxiety.

Persistent skin issues are less typical but are associated with celiac disease.

Mississauga mom Christina Patze also hit dead ends with doctors while trying to get a diagnosis for her seven-year-old daughter.

“She had bumps on her nose, and she’d have bumps on her elbows and legs and big patches of eczema, and she said to me why do I look like this why is it happening to me?” she told CityNews.

Her daughter Ellie was seen by an immunologist, a dermatologist, and a pediatrician but “doctors never put celiac on the table.”

It was her own research that put her daughter on the road to recovery. The only treatment for celiac disease is a strict gluten-free diet.

“I hope that other people out there educate themselves about the disease and what it can do to you and that doctors start to recognize it more,” Patze said.

According to the Canadian Digestive Health Foundation it is estimated that nearly one in 114 Canadians are affected by celiac disease, although about 90 per cent of cases remain undiagnosed.

The foundation’s CEO Kate Murray said lack of awareness, the wide range of symptoms and the cost of testing in Ontario could be to blame.

“I don’t know the rational behind Ontario not covering the blood test. 125 dollars could be the difference of putting food on the table or not,” she explained.

“We are creating a bit of a storm for further health challenges if we are not intervening early on.”

In a statement to CityNews, the Ontario Ministry of Health said the small bowel biopsy is the “gold standard” for diagnosis of celiac disease. It goes on to say OHIP coverage of the celiac blood test may be up for review.

This is something Hunt believes is long overdue and would put a stop to a lot of unnecessary suffering.

“Why can’t we just have more testing? Why can’t celiac just be ruled out? Why do we need to work so hard to ask for it?”