A Celiac Story: From Cancer Diagnosis to Gluten-Free Health
When I was a toddler, I mysteriously began to suffer from unexplained chronic diarrhea following meals. This resulted in rapid weight loss, severe malnutrition and chronic fatigue. My parents took me to every specialist under the sun to solve the mystery of why their only child was so sick.
I was admitted to a renowned children’s hospital for nearly two months and during that time, I became increasingly ill. My stomach became bloated and distended, not unlike children seen starving in third world countries. The doctors were mystified; they diagnosed me with terminal cancer and gave me a few weeks to live, although they said they could not find the cancer.
During one of my meals in hospital, for some reason I picked up a banana from my plate and ate nothing else. It was the first time I had eaten without experiencing diarrhea while in the hospital. That banana literally saved my life, as it sent the message to hospital staff that my condition was food-related. I underwent a bowel biopsy which, thankfully, later confirmed a diagnosis of celiac disease. Adherence to a gluten-free diet helped me to make a speedy recovery, and my health returned.
Growing up gluten-free in the ’80s was very different in comparison to being gluten-free today. I live in Toronto and, surprisingly, there was only one manufacturer of gluten-free food in Canada at that time. Decent recipes were scarce. With respect to baking, my mother was stuck using rice flours that produced baked goods that were rather dry, dense and crumbly. I was never a fan of the breads I had to choose from. But, I was happy with what I had and did not complain much (I had nothing to compare my food to).
As a child, my main struggle was social situations; I felt “different” – out of place at school, at parties and at camp. I wanted to fit in, however, I couldn’t as far as food was concerned. Being one in 4,000 with celiac disease at that time, I became known as “the girl who ate weird food.” Sometimes the target of tasteless comments, my peers didn’t understand that my food was in fact my medicine, and that my diet was never a choice.
Growing up, I was found to have several vitamin and mineral deficiencies, which were monitored and fairly manageable. My health was pretty good, if my food a bit boring, until my late 20s. I was suddenly hit with a very bad (unknown) virus, and following my recovery from it, I was faced with a slew of health issues that seemed to snowball, including diagnoses of chronic pain, chronic headaches, eczema, fibromyalgia, osteoporosis, kidney stones, and issues around fertility.
After seeing a number of medical doctors and specialists who prescribed numerous prescription drugs, I decided to explore the natural health route. I found what worked best for me was an integrative approach (being advised by both practitioners of western medicine, as well as practitioners of complementary medicine).
After a long road and much hard work – changing my lifestyle, diet, exercise routines, vitamin, mineral and supplementation regimens and massage therapy, my overall health gradually began to improve. My bone mineral density improved dramatically over time and finally reached a normal range for my age.
What I found most surprising with respect to my health struggles was my osteoporosis diagnosis. I thought that by following a gluten-free diet all my life, especially from such a young age, I could not possibly be at risk of developing such a disease. I was told the cause of my osteoporosis was unknown, and that genetic predisposition, poor absorption and the “link” to celiac disease likely all played a role.
I have learned how to manage celiac disease through continuous learning, and by trial and error. Whether or not my villi (the tiny projections in the intestine that are responsible for absorbing nutrients) properly healed when I was young, I know I do not absorb nutrients properly. As a result, I do my best to monitor various nutrient levels about every six months. I continue to take various supplements that my body needs, on the advice of my naturopath. I also see a rheumatologist regularly to monitor my bone mineral density and ANA levels.
I try to maintain a healthy diet and lifestyle to the best of my abilities — I choose clean, whole, unprocessed foods and steer clear of refined sugar and grains. I try to keep abreast of current research about celiac disease. It’s been a journey, but I am finally in good health, and I learn more every day.