It’s no piece of cake to learn to live with celiac. But for these three women, the diagnosis was both an answer and a new beginning.
“Cinnamon buns,” Beth Ringdahl says wistfully when asked what food she misses the most. “I could make gluten-free ones,” the Vancouver management consultant adds, but her intonation says: they just wouldn’t be the same.
Like most most people diagnosed with celiac disease, Ringdahl has learned to watch what she eats like a hawk.
Foods containing gluten – a protein that gives grains such as wheat, rye and barley their elasticity – can make her very ill, spurring bouts of symptoms such as diarrhea or constipation, stomach cramps and bloating, chronic headaches and concentration problems that Ringdahl refers to as “brain fog.” The only treatment for celiac is lifelong avoidance of gluten-containing foods.
Although she was only diagnosed three years ago at the age of 43, Ringdahl appears to have been living with celiac disease since childhood. “I remember, as a kid, lying on the floor of the bathroom just in so much pain,” she says. The gastrointestinal symptoms later gave way to anemia, severe headaches and achy joints.
Ringdahl suspects that early damage left its mark on her body: she stands just over five feet tall, between six and eight inches shorter than her three sisters, none of whom has celiac.
Stunted growth is certainly consistent with the disease, which affects the tiny, finger-like projections called villi that line the small intestine and help to absorb nutrients. When a person who has celiac eats gluten, the villi become flattened, which greatly reduces the uptake of vitamins and minerals in food, and the result is malnutrition and often anemia.
Children with the disease typically have delayed growth and are very thin because their bodies aren’t getting the nutrients needed to grow properly.
The same malabsorption can delay puberty and may lead to fertility issues later in life. Ringdahl, for instance, didn’t start menstruating until she was in her late teens and she says that celiac-related infertility left her unable to have children.
Ringdahl had several of the classic symptoms of the disease. But there is a long list of possible signs, so those with celiac will not necessarily always have the same symptoms or experience of it. In fact, a 2003 study by researchers at the University of Maryland Medical Center found that as many as 41 per cent of adult celiacs are asymptomatic, meaning that they don’t have any noticeable symptoms at all.
There is one constant though: the need for those with the disease to adapt to life without gluten – a protein so ubiquitous that it is hugely challenging to avoid, in much the same way that dairy is one of the toughest food allergens to eliminate from a diet. On a more positive note, it is also common to find that a celiac diagnosis offers a new sense of control to a person who may have been long baffled by those varied symptoms.
For Marilyn Dion, the diagnosis came after serious illness. “About five years ago, I got deathly ill,” says Dion, a 54-year-old mother of three from Hamilton, Ontario. “Vomiting, diarrhea, severe headaches that wouldn’t go away – I was bed-ridden.” After several trips to emergency, doctors finally figured out what was wrong, to an extent.
After a biopsy to her lower intestine (the most reliable diagnostic tool for celiac) was positive for the disease, Dion cut gluten-containing foods from her diet. The results were almost immediate, and surprising: “Colors were brighter and more distinct, so obviously my vision had been affected,” she says.
“I could learn better, remember better and I had more stamina. It was like – whoa, new person here!”
But relief has not been complete. Dion has continued to experience bloating, fatigue and pain, prompting the doctors to add possible colitis and Crohn’s disease to her diagnosis. Both conditions, which affect the intestines and colon, are often associated with celiac.
“They still don’t know for sure,” says Dion, frustrated by the lack of answers. “I’ve had miscellaneous symptoms, but not enough to put me in the hospital again.”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 .