How Many Doctors Did You See Before Your Diagnosis?

August 24, 2015 – DENVER (CBS4) – More and more children are coming down with a serious disease, and for patients with celiac disease, going gluten-free isn’t a fad — it’s a necessity.

Doctors say one in every 100 people has celiac disease, which means they can’t eat anything with gluten. Mia Brierly, 15, was sick for five months before she finally found out what was causing it.

“I was in extreme abdominal pain and I was throwing up every morning,” Mia said. “I was very, very ill and we had absolutely no idea what was wrong.”

“This kind of thing has pretty much got to be any parent’s nightmare,” Mia’s mother Amy Brierly said. “I mean suddenly your child is so ill that they can’t even function.”

After months of testing, doctors discovered Mia had a chronic condition called celiac disease, where even the tiniest bit of gluten — a protein found in wheat, barley, and rye — causes severe injury to the intestines.

“Even tiny amounts that we call cross-contact that gets into their food can cause severe immune reactions with vomiting, diarrhea,” said Dr. Ed Liu, Colorado Center for Celiac Disease Director.

They can be sick for days while others may not have any symptoms at all. Liu says untreated celiac disease can stunt children’s growth, lead to osteoporosis and even infertility. And diagnosing it can be difficult.

“It’s a common story for individuals who have a lot of symptoms to be sent around from doctor to doctor until they end up getting diagnosed with celiac disease,” Liu said.

Now that Mia has the diagnosis she’s had to change the way she eats and lives. And she’s the first to admit that living gluten-free isn’t easy. “I really miss donuts,” she said.

Celiac disease can be diagnosed with a simple blood test at the doctor’s office.

What are the blood tests for Celiac disease?

In Victoria, Vancouver Island and the Gulf Islands, there are two blood tests that measure the presence and quantity of  the ‘army’ of auto-immune cells that gluten triggers in individuals with CD:

• tTg: IgA anti-transglutaminase antibody tes
• Total Serum IgA

While these blood tests are very sensitive, they are not 100% accurate. If the tTg test is positive or the IgA test shows a deficiency, a duodenal biopsy is required to make a definitive diagnosis.  Collected under mild sedation, evidence of the damage that gluten creates in the microvilli and larger villi provides a definitive diagnosis. Printer-friendly version Testing for celiac disease.

Blood tests and intestinal biopsies are diagnostic services that are provided at no charge to residents of British Columbia. See Medical Services Plan.

IMPORTANT: It is essential that the blood test and the biopsy be performed before removing gluten from your diet. Starting on the gluten-free diet prior to testing can interfere with making an accurate diagnosis. If you have already removed or reduced the gluten in your diet, medical experts recommend a gluten challenge, prior to both the blood tests and the duodenal biopsy.

Adults – 10 grams of gluten (4 slices of bread or equivalent) for at least 1 month prior
Children – 5 grams of gluten (2 slices of bread or equivalent) for at least 1 month prior
If you have been on a gluten-free diet for a long time it may take 2-3 months on a gluten challenge to turn the tTg and biopsy positive. Because it can be very uncomfortable to reintroduce gluten to one’s diet, it is strongly recommended that you consult your medical care provider about being prescreened for CD BEFORE removing gluten from your diet. The gluten challenge is truly ‘a challenge.’

For more information about Celiac disease, click here.