Janet Dalziel had never heard of Celiac when her doctor told her in 2002 that it was that disease that was causing her health problems. Her doctor told her she could no longer eat gluten, a special type of protein that is commonly found in rye, wheat, and barley.
Eating gluten harms the inner lining of the small intestine for Celiacs and the condition can become progressively worse, leading to the onset of other health problems such as anemia (because iron is not being absorbed properly) or osteoperosis (because calcium is not absorbed.)
Dalziel went to her doctor because she was falling asleep on her couch every night at 8 p.m. Fatigue is one of the numerous symptoms of Celiac, which make it so difficult to pin down. For some unusual reason, her doctor suspected the disease right away and sent her for the $150 blood test (not covered by OHIP) which pins it down. The blood test was positive and a minor biopsy confirmed the diagnosis.
“I’m a good amateur cook and I went home and said ‘Oh my God, What can I eat now?’ says Dalziel (pronounced Deal.) “We decided to go out and we chose Chinese food, because that seemed safe. Wrong — because there is gluten in soy sauce.”
Still reeling at the thought of living a life without her usual cereal, bread, baked goods, etc. the retired high school vice-principal and her husband went to a book store and picked up a couple of key instructional books.
“Then we went to the biggest Loblaws that we could find and we started going up and down the aisles looking for what I could eat,” Dalziel said in an interview at the offices of the Canadian Celiac Association on Dixie Rd. near the Gateway plant. “There was nothing. That’s when I burst out crying in the middle of the store.”
Five years into her life as a known Celiac, Dalziel is an educated consumer, a knowledgeable ambassador for all those who have the disease and the current president of the group, representing 7,000 members across the country.
The scariest thing about Celiac, she says, is that there are thousands and thousands of Canadians walking around without even knowing that they have it. Lots of them think they have indigestion or migraines or depression or lactose intolerance, all of which are symptoms.
“Tens of thousands of people don’t know they have it and their doctors usually don’t know it,” she says. “It’s an average of 10-11 years to get a diagnosis.”
The only really good study done on its prevalence suggests that, for every one person diagnosed, a staggering 133 cases go undetected.
“There are people sitting on organ-transplant lists who might not have to be there,” if they were appropriately diagnosed says the president of CCA, which does its best with a dedicated volunteer board and a small staff to tell the largely untold story of Celiac to the world.
Clarkson resident Nadia Chychota was diagnosed 14 years ago. Her mother died of colon cancer in 2003. Nadia believes the cancer was brought on, at least in part by the weakness of her immune system from Celiac. One of Nadia’s sisters also has the genetic condition.
Chychota, a volunteer with CCA, says that there is one very good thing about Celiac disease: once you know you have it, you can eat a gluten-free diet and return to good health. “I always congratulate people on their diet and say ‘Welcome to the club,’” she says. “It’s a disease but it’s the only disease I want to have,” she says, “because it’s the only one where you can be assured of feeling better once you learn the diet.”
It is a tricky thing learning the diet, though. The 38-year-old is in the midst of launching her own business, called Shelf Confidence which will help newly-diagnosed Celiacs on the steep learning curve they will face.
“I know how frustrating it can be,” she says. “You don’t know what it’s like until you’re diagnosed.”
Reading the ingredients’ list for food products becomes critical. Chychota plans to go directly into people’s kitchens with an information kit, to look through their shelves and tell them what they can still eat and what they can’t, which stores carry appropriate products and where they can eat in local restaurants, etc.
“I won’t be speaking medical-speak,” she says. “I can talk to them plainly and provide support and try to explain the gluten-free diet.”
The Mississaugan hopes to launch her little effort to make a big dint in the disease during October, which is National Celiac Month.