Uncertainty is nothing new for Dion, as it has been a continuing battle to pinpoint the cause of her health problems. Severe anemia lead to a hysterectomy when she was in her late 30s, which Dion now believes was likely unnecessary.
Her catalogue of symptoms, which included concentration problems, memory loss, chronic joint pain and intermittent constipation and diarrhea, led to misdiagnoses over the years. She was treated for depression, irritable bowel syndrome, gastroesophageal reflux disease (GERD) and chronic fatigue among others.
Because so many of the symptoms mimic other ailments, or are considered stand-alone conditions, many celiacs go years – an average of 11 in fact – before they are diagnosed properly.
“In the meantime, not only do you not feel well,” says Dion, “you can’t really get on with your life as fully as you want to.”
Recent studies indicate that the average age of diagnosis for celiac disease is between 40 and 50 years old. Diagnosis in middle age can partly be attributed to the confusion over symptoms, but also to the fact that in some people, the genetic markers that predispose an individual to celiac disease are simply not “triggered” until well into adulthood.
Janet Dalziel, a retired Toronto high school vice principal, is one of those who “developed” celiac in mid-life. She was diagnosed at the age of 54, and for a couple of years hadn’t told her doctor about the fatigue and sporadic gastrointestinal upset that she had been experiencing. She had chalked that up to stress. “My husband was the one who insisted I mention it when I went for my regular physical,” says Dalziel.
Her on-the-ball physician suspected celiac disease and sent her for bloodwork and then a biopsy. Both confirmed the diagnosis.
Five years later, Dalziel is feeling much healthier, but it took a couple of years for the switch to a gluten-free diet to resolve the symptoms. “Some people feel better after just a few weeks, but that was not so in my case.”
The psychological and emotional aspects of being diagnosed with celiac also take getting used to. “You cannot be celiac and be spontaneous,” says Dalziel. As with food allergy, shopping, cooking and eating out all suddenly become more complicated. Gluten is so widespread that ingredients on every package label must be checked, convenience foods become a thing of the past and restaurant staff must be interrogated at every outing.
Giving up gluten is a bigger sacrifice than most people would realize. Despite that, however, all three of these women have retained an upbeat perspective. “My life has only been better,” says Ringdahl of living with celiac. “And I think this has made me do a lot of self-development as well.”
Ringdahl and Dion have each opted to start their own businesses as a way of taking back some control, and of coping with the lingering effects of the disease. “I still feel like heck,” says Dion. “But I hope that I will heal myself in the meantime.”
Dalziel, who describes herself as a “pretty good amateur cook” has been able to find joy in the kitchen, and is close to mastering a gluten-free version of her favorite off-limits food: French bread. “The chewier the better,” she says.
So these three have faced challenges, are making the best of things, and are even turning their experiences into something positive. All have become involved with the Canadian Celiac Association (with Dalziel rising to the presidency) and are advocating for those with this disease.
A priority is awareness in the medical community. “To this day, there are still doctors who do not know that there is blood test for celiac disease,” says Dalziel, who notes that the test, called tTg, is not even on the standard requisition forms doctors use when ordering blood work from laboratories.
Considering that the Maryland study concluded that a majority of those who have celiac are undiagnosed; and that there are serious health concerns for people who leave the disease untreated – from higher risks for certain cancers to osteoporosis and diabetes – getting doctors to recognize the importance of testing for celiac is a big issue.
“There are people out there who are wasting away,” says Dion. “And if they have this disease, it’s something they need to know, and the sooner the better.” If you suspect that you may have celiac disease, speak to your doctor. A simple blood test is usually the first step towards a diagnosis, and a whole change in well-being.
For more information, visit the Canadian Celiac Association.