VIDEO: Maple Ridge woman with celiac disease warns of being misdiagnosed

After suffering from what she thought was a stroke, a Maple Ridge woman had to go through four years of tests and scans before being diagnosed with a disease that affects one per cent of the Canadian population.

Sonia Pereira was eventually diagnosed with celiac disease, a condition, according to the Canadian Celiac Association, where the absorptive surface of the small intestine is damaged by a substance called gluten.

The resulting intestinal damage results in the body’s inability to take in nutrients like protein, fat, carbohydrates, and vitamins and minerals, and can present itself in classic symptoms such as: chronic diarrhea; abdominal pain; malabsorption; and weight loss.

However, more and more patients are now experiencing atypical symptoms that include: anemia; osteoporosis; extreme fatigue; oral ulcers; liver enzyme abnormalitities; constipation; infertility; dental enamel defects; and neurological problems.

In Pereira’s case she was sitting in her car in 2015 talking to the CEO of a company when she realized she suddenly could not speak and was not making sense. The person on the other end of the phone suggested she go to the hospital but Pereira decided to go home and continue to work on her computer.

Then she was unable to read the screen in front of her. It was then that she decided to seek medical help.

At first she was told she had a stroke. Then doctors looked further and thought maybe it was migraines. Some told her they had no clue what was causing her symptoms.

It would take more than four years of seeing doctors and specialists – more than 30 in all – and at least, said Pereira $1,000,000 in tests and scans to receive her final diagnosis.

In a video posted online for the Canadian Celiac Association, to bring awareness to the disease, she spoke about what it was like not knowing what she was suffering from.

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“I remember sitting in bed and just thinking is this it,” questioned Pereira. “What if it doesn’t get better, what if they can’t figure this out?”

“When you have a complex illness it goes on, and on, and on, and then you think the next doctor’s appointment they’ll figure it out or they’ll run this test then there’ll be answers. But, sometimes that’s not the case. It’s not as simple as that,” she said.

It is estimated that more than 400,000 people in Canada have celiac disease, but only one in seven are aware they are suffering from it, noted Pereira.

In Maple Ridge, she estimates, that there are about 800 people suffering from it.

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Even when a doctor did diagnose her properly, celiac disease was not his first pick. It was third on a list of possibilities.

“And he goes, let’s just run the bloodwork for celiac disease just to be sure,” explained Pereira. And, she said her blood work was “off the charts”.

Within two weeeks of removing gluten from her diet, Pereira was back to her normal self.

May is Celiac Awareness Month and Pereira wants to remind others of all the symptoms of celiac disease – especially since her own symtoms were neurological. And to advise anyone suffering from something that doctors can’t put a finger on, to ask their doctors to run a test for the disease.

Pereira said she went from being someone who really had their whole life in front of them to suddenly not knowing if she would ever see that life again.

“Because my illness went on so long if feels like I lost a large part of my life,” she said.

For more information about the disease or to donate go to celiac.ca.