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Tips for living with celiac disease

It can take some time to wrap your head around learning you have celiac disease. From a new diet to a new lifestyle, no doubt you will have a whole lot of questions. But living with celiac disease is not as dire as it was even a few years ago.

Woman shopping for food

From new gluten-free products flooding the market to the community’s better understanding of the condition, living with celiac disease isn’t all bad if you follow these practical tips.

What is celiac disease?

The Canadian Celiac Disease Association defines celiac disease as a “medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.” It has been estimated that as many as one in 133 persons in Canada is affected by celiac disease. Symptoms vary from person to person but can include any of the following:

  • Anemia
  • Chronic diarrhea
  • Weight loss
  • Fatigue
  • Cramps and bloating
  • Irritability
  • Bone and muscle aches
  • Brain fog
  • Rashes
  • Canker sores
Diagnosis is made with a blood test that checks for abnormal levels of the following:

  • AGA (anti-gliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • Total serum IgA

Definitive diagnosis is made through a small bowel biopsy to look for signs of damage. Note that it’s very important to get tested before you adopt a gluten-free diet, because once you’re on a gluten-free diet, your bowels might begin to heal enough to give you a false-negative biopsy test.

What is gluten-free?

Gluten-free is defined in section 9.9.4, “Gluten-Free Foods” [B.24.018, B.24.019], of the Food Labelling and Advertising Act: “A food is not permitted to be labelled, packaged, sold or advertised in a manner likely to create an impression that it is ‘gluten-free’ unless it does not contain wheat, including spelt and kamut, or oats, barley, rye, triticale or any part thereof.”

It’s important to note that, according to Canadian laws, oats (even pure, uncontaminated oats) are not defined as gluten-free and thus should be avoided by those on a gluten-free diet because they have celiac disease.

Living with celiac disease

As with any diagnosis of a health disorder, following the treatment plan outlined by your doctor and care providers is very important. Currently the only treatment for celiac disease is to adopt a strict, lifelong gluten-free diet. While the idea of that might sound daunting — all you might think is “what about my bread?” — a lot of new, natural products are available these days that will still make your diet enjoyable.

Your health

First and foremost, you need to stay on top of your health. Even after adopting a gluten-free diet, it’s important to get yearly blood screenings to check again for abnormal levels in the blood. You could be ingesting gluten without your knowledge, and these tests will ensure you’re as healthy as you can be.

Also make sure you’re informed about your disease. Talk to others who have been diagnosed, and learn the dangers of not following a strict diet and what to watch for if you’ve accidentally ingested gluten.

Since celiac disease has a strong genetic component, it would be wise to encourage close family members to get tested as well. Sometimes you could be doing damage and not show any of the classic symptoms, and the only reason someone gets tested is at the urging of a family member who has been diagnosed.

Safety concerns

Reading labels is something you are going to have to get used to doing. Checking for ingredients that contain gluten and double-checking with the manufacturer of a food product when you need to will become important parts of your grocery shopping.

Your strict gluten-free diet will go beyond just making sure what you’re eating is free of gluten; food-prep areas and utensils need to be gluten-free as well. Cross-contamination is a big issue for those diagnosed with celiac disease, because even one bread crumb or trace of flour can cause a terrible reaction from the gluten it contains.

Simple tips to follow

  • Be open to trying new foods.
  • Don’t be afraid to speak up for yourself and insist on gluten-free food.
  • Keep grocery bills down by eating naturally gluten-free foods, such as fresh fruits and vegetables.
  • Talk to others who have celiac disease, and ask their opinions on the best gluten-free alternatives.

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