Coping with celiac disease

Source: Best Health Magazine, March/April 2012

When I was a toddler, I struggled with chronic diarrhea, severe malnutrition, weight loss and fatigue. My hair was falling out and my stomach was distended. My parents took me all over Toronto from specialist to specialist to find out why I was failing to thrive, and I ended up in hospital for nearly two months with a diagnosis of terminal cancer. One day, while still hospitalized, I was eating my lunch and, perhaps by fluke’or maybe instinct’I decided to eat just the banana and skip the rest. Afterwards my stool was firm, and the hospital staff finally realized my problems must be food related. A bowel biopsy determined I had a severe case of celiac disease (CD), an autoimmune disease in genetically susceptible people that is triggered by eating gluten, a protein found in wheat, rye and barley. When people with CD eat gluten, the small intestine that absorbs nutrients from food is damaged. I was put on a gluten-free diet, and I’ve been on it ever since.

There are so many hidden ingredients that contain gluten in processed foods that it can be hard to completely avoid it. You have to really do your research. It wasn’t until about 10 years ago that I became more aware of what was in processed foods. Today, at 36, I read every label, and I ask about ingredients when I eat out. When I’m in doubt, I don’t eat it.

But because of the damage that was done before I was finally diagnosed, and years of not reading labels and unknowingly eating gluten, I’ve battled chronic pain and vitamin deficiencies, and in my early 20s I was diagnosed with osteoporosis. I now see a naturopath regularly and take daily vitamin and calcium supplements; as well, I see a rheumatologist every year to have my bone density checked. CD can cause neurological problems, cancer and fertility problems. I am lucky not to have had those issues, and that my two young sons have not inherited the condition.

When it comes to cooking for my husband and sons, I prepare the same meal for everyone, but change the grain for my meal. If we’re having pasta, I make gluten-free meat sauce for all of us, and two separate pots of noodles (one that’s rice pasta, for me). For sandwiches, I use gluten-free bread for me (preferably a freshly baked one from my local bakery) and regular bread for everyone else. With main courses (soup, quiche, chili or stew), I prepare them gluten free. For cereal, my favourites are those that have gluten-free oats, flax and dried fruit.

In part because I couldn’t find many good online resources for living gluten free, in August 2011 I started a website called glutenfreefind.com/blog. It features my blog as well as other contributors’ blogs, and it’s also a directory to stores that carry gluten-free products. I love that the website lets me communicate with other people who have CD.

Back in the ’70s, when I was first diagnosed, it was difficult to find gluten-free products. Thankfully, things have changed: Now I can shop at any grocery or health food store to find tasty foods. And the products are improving all the time, which makes it so much easier to be gluten free and stay healthy.

More on celiac disease

‘ It’s estimated that about one in 100 Canadians have the disease.
‘ CD may be the underlying cause in a number of conditions, including osteoporosis, irritable bowel syndrome, intestinal lymphoma, skin disorders, depression, thyroid disorders, short stature, type 1 diabetes, numbness and tingling, lupus and an arthritis-related condition called Sjögren’s syndrome.

A proper diagnosis key

People shouldn’t self-diagnose and go gluten free without having a blood test and intestinal biopsy (the tests that are required to determine celiac disease). The only treatment for CD is a gluten-free diet, but it can be challenging and expensive to maintain. One way to help defray the costs is the Canada Revenue Agency tax deduction available to those with a medically certified case of CD’another reason why it’s important to be officially diagnosed.

This article was originally titled “‘How I cope with celiac disease'” in the March/April 2012 issue of Best Health. Subscribe today to get the full Best Health experience’and never miss an issue!