Being diagnosed as a celiac can bring on a slew of new challenges. From social functions to medications, it's important to be proactive and stand up for your health. With proper support and time to adjust, you can take control of your disease—and it may not be as difficult as you think.
For people suffering from celiac disease, sometimes avoiding gluten is the easiest part of their diagnosis. The social, financial, nutritional, and emotional aspects surrounding the disease cause many of the challenges after receiving a diagnosis.
What is celiac disease?
Celiac disease is an autoimmune disorder in which the small intestine becomes inflamed and is unable to absorb nutrients from food properly. This is caused by the ingestion of gluten, a protein found in wheat, barley, and rye.
How prevalent is it?
Approximately 1 percent of the Canadian population has been clinically diagnosed with celiac disease, but that number is misleading due to the large number of undiagnosed cases. This number also does not include people who have non-celiac gluten sensitivity or those who suffer from a wheat allergy.
One treatment option
The only treatment for celiac disease is a lifelong adherence to a gluten-free diet. In order for patients to have the most success in following this diet, it’s important they have the support of their families and society.
What issues do celiac disease patients face?
People with celiac disease can face myriad issues depending on their individual circumstances, but after talking with a few celiac patients and their families, some common themes arise. Those who suffer from celiac disease say there are a lot of misconceptions about celiac disease. Many people don’t understand that it’s a disease, not an allergy.
Some difficulties they encounter include
- feeling left out of certain social activities such as pizza day at school or potluck lunch at work
- feeling conflicted between not wanting to offend a server, host, or hostess by asking too many questions, and refusing food to protect their own health
- trying to “learn the ropes” of cooking, baking, and trying new gluten-free foods, which may be more expensive than regular foods
- maintaining balanced nutrition
How can these issues be overcome?
Each person will have his or her own way of overcoming the issues they face while living with celiac disease. A large part of a person’s success will depend on their outlook and support network.
What role does outlook play?
One’s outlook may be the most important aspect of living with celiac disease, or any disease for that matter. Having a positive attitude toward a gluten-free diet is crucial for successfully living with celiac disease.
It’s important not to think about this new diet as restrictive or lacking. Although it may be a challenge at first, these lifestyle changes will make those with celiac disease feel healthier, happier, and more vibrant. As the body finally absorbs nutrients properly, they’ll feel better and regain control of their health. There are so many gluten-free options available now that there’s no need to feel deprived.
Often, people with celiac disease discover that a meal is more about sharing with people they care about, and less about the food that’s on their plate. Once the technical aspects of eating a gluten-free diet are mastered, it simply becomes a new way of life with a little inconvenience thrown in once in a while.
Tips for families
- Be empathetic to your loved one’s situation.
- Learn about the disease, safe ingredients, and the importance of not cross contaminating kitchen utensils, foods, et cetera.
- Parents, be careful not to let your fear of contamination inadvertently isolate your child and family.
- Get yourself screened for celiac disease.
Celiac support groups
There are many associations that provide information and offer support across Canada.
Here’s just a small sample:
- Canadian Digestive Health Foundation; cdhf.ca
- Celiac Canada; celiaccanada.com
- The Canadian Celiac Association (CCA); (celiac.ca) has many local chapters across Canada, including:
- Newfoundland and Labrador; celiacnl.ca
- Nova Scotia; celiacns.ca
- Ottawa Chapter; ottawaceliac.ca
- Toronto Chapter; torontoceliac.org
- Manitoba Chapter; manitobaceliac.com
- Calgary Chapter; calgaryceliac.com/CCA
- Edmonton Chapter; celiacedmonton.ca
- Vancouver Chapter; vancouverceliac.ca
- Victoria Chapter; victoriaceliac.org
Gluten-free tax credit
The Canada Revenue Agency allows people with celiac disease to claim the incremental costs of gluten-free products on their income tax return. The incremental cost is the difference between a regular loaf of bread, for example, and a gluten-free loaf of bread. For more information, go to cra-arc.gc.ca/gluten-free.
Tips for people with celiac disease
- Educate yourself about celiac disease by reading food labels, discover the hidden sources of gluten, and follow proper nutrition.
- Be patient and understanding with other people; educate those people who want to help and support you but don’t know how.
- Learn how to advocate for yourself; don’t be afraid to ask questions or request measures to ensure there are no cross-contamination issues with the foods you eat.
- Be assured that, at first, watching everything you eat may seem scary, but you will adapt.
- Read all labels thoroughly, even if the front indicates “gluten free” (this includes medications).
- If you’re unsure, don’t eat it.
- As tempting as it may be, don’t cheat!
- Prepare for eating out by looking at online restaurant menus before you go out to dine.
- Eat beforehand or bring a snack with you to a social event.
- Don’t be afraid of offending anyone with your questions or requests.
- Don’t focus on fads; instead focus on your health and what’s best for you.
- See your doctor or health care practitioner at least annually for a checkup.
- Reach out to a local support group in your area if you’re feeling down or isolated.
- Seek professional nutritional help, if needed.