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Straight From the Mouths of Celiacs

Real Talk On The Pain-In-The-Gut Disease

When my daughter Lily was diagnosed with celiac disease at age three, we didn’t go so far as to rejoice, but having an explanation for why she was throwing up every night and not gaining weight or growing, why her hair was patchy and her stomach so painfully distended finally gave us something to latch on to.

I could exhale, though I’d never heard of celiac and actually had to Google “gluten”—which is ironic given its presence in all my favourite foods. (The term “gluten-free” hadn’t nearly reached the level of mainstream vernacular that it has today.) But with Lily’s diagnosis came knowledge and a fresh repertoire of recipes, not to mention a lifestyle overhaul for our family and a new degree of hypervigilance for my child’s health and safety. As hard as that was (and still is sometimes), at least we knew what was hurting her. We trudged through trial and error, but we considered ourselves lucky that Lily was diagnosed at a young age, before any irreparable damage was done. For many people, it takes years of suffering to get to the bottom of their myriad symptoms.

In time, our family would become part of the gluten-free community and gluten-free options would multiply by the year, aiding the cause in so many important and, eventually, delicious ways. And while I would never choose celiac, it’s the devil we know and I’m grateful for the learning and growth that have come along since that fateful day in 2009. Lily is thriving and our family is healthier for it. But if it takes a village to raise a child with celiac, it takes a mighty army to raise the awareness and resources necessary to keep our gluten-free friends and family well fed, included, understood and out of harm’s way, every day.

With Celiac Awareness Month upon us this May, it’s time to celebrate the triumphs while continuing to shed light on the realities of living with this pain-in-the-gut disease. With all that’s new and exciting in the gluten-free world, public awareness and a strict gluten-free diet for life remain a celiac’s best and only treatment. Gluten-free has come a long way, baby, but we still have a way to go.

Here’s what six fabulous people living with celiac want you to know.

Lisa Cantkier

Holistic nutritionist, writer and editor

Diagnosed with celiac at 18 months

lisacantkier.com

Celiac disease is “malabsorptive” and “systemic,” which means that celiacs have issues absorbing nutrients and can experience symptoms with any body part even though the site of diagnosis is in the gastrointestinal tract. Many of us are at risk for nutrient deficiencies that lead to uncomfortable symptoms—even on a gluten-free diet. Although I’ve been eating gluten-free all my life, I’ve experienced bone loss, irritable bowel syndrome, kidney stones and chronic pain. Some experts say this happens because of accidental gluten consumption, unrepaired intestinal damage, or other intolerances. Monitoring my vitamin and mineral levels helps to prevent deficiencies and correct resulting problems. Luckily, nutrition has helped as well.

 

Kathy Smart

CEO of Live The Smart Way, Inc.

Diagnosed with celiac at 12 years

livethesmartway.com

Celiac disease to me isn’t a lifelong sentence of not being able to eat things. I see it as an opportunity to explore different tastes and foods and experiment with various textures. Thanks to celiac disease, I have had to think “outside the box” and create delicious foods with Mother Nature’s bounty. In many ways it can be a gift! 

 

 

Paula Cooper

Chief confidence maker, DineAware

First learned of her celiac disease in 2008

dineaware.com

What is most important for people to know about celiac disease is the serious and dramatic impact it has on the body. Think about all the food you’ve eaten in the past year. Now imagine what it would mean for your short- and long-term health if you absorbed virtually no nutrients from all that food. A person with celiac often repeats this cycle for years and even decades before diagnosis. The effects are devastating, even deadly. 

 

 

 

Jordan Middlebrook (King Gluten Free)

Celiac advocate

Diagnosed with celiac at 27 years

kingglutenfree.com

Being diagnosed with celiac disease isn’t a death sentence; it’s a life sentence—a new outlook on life and how to experience a unique way of eating by becoming 100% gluten- free. Celiac isn’t about moping around and feeling sorry for yourself. It is standing tall and saying, “Yeah, I’m just a little different but only because my food doesn’t have gluten.” Then, high fives all around.

 

 

Haley Frydrych

University student and VP of the Toronto chapter of the Canadian Celiac Association

Diagnosed with celiac at 18 months

torontoceliac.org

Celiac disease is not a diet trend! Many restaurants and stores don’t recognize that it’s a disease and they need to take appropriate measures to ensure that what they say is gluten-free really is gluten free. When cross-contamination or mistakes happen, people with celiac can have severe gastrointestinal issues and a variety of related symptoms that can last for days. Recently I was given cookies that were mistakenly labeled gluten free and I ate two because they were so delicious. Shortly after I was vomiting nonstop with severe stomach pain that lasted for hours. When eating out, make sure the waiter knows you are celiac and not just on the trending gluten-free diet.

 

Lily Eklove

Grade 4 student and Gluten Free Garage muse

Diagnosed with celiac disease at 3 years

Let’s say you get diagnosed with celiac. Can you change your diet so you feel better or should you keep eating gluten because it tastes better? Which sounds more mature and good for you? Celiac is not an allergy; it’s a disease. You have to stay strong because there’s nothing you can do about it and you can’t outgrow it. It’s hard watching people eat things I can’t eat that look really good. But you don’t have to feel like you’re missing out. Just go to Gluten Free Garage and see for yourself!

 

RonniLyn Pustil is the founder of Gluten Free Garage, Toronto’s original pop-up gluten-free marketplace, which is kicking off Celiac Awareness Month at the Wychwood Barns on May 1.

 

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CELIAC FACTS AND STATS

  • Celiac disease is a genetic autoimmune disease in which the body attacks the small intestine when it comes in contact with gluten. During the inflammatory attacks, the villi in the small intestine become damaged and cannot absorb nutrients.
  • Gluten is a protein found in wheat (and wheat varieties such as spelt and kamut), barley and rye.
  • Rates of celiac have nearly doubled in the last 25 years in Western countries.
  • An estimated 1 in 133 Canadians are living with celiac disease.
  • The risk for developing celiac disease is increased 20 times for those who have a first-degree relative with the disease.
  • Health Canada estimates that some 300,000 Canadians suffer from celiac disease and many of them don’t know it.  
  • In Canada, the average length of time between the onset of symptoms and the diagnosis of celiac disease is typically between 9 and 11 years.
  • Undiagnosed celiac disease can lead to a number of other disorders, including infertility, osteoporosis, neurological disorders, lymphoma and other autoimmune diseases.
  • There are more than 200 symptoms related to celiac disease.
  • In addition to the rise in celiac incidence, there are increasing numbers of people with non-celiac gluten sensitivity.