Gluten: Living with Celiac Disease

STORY, PHOTOS AND MEDIA BY KATE WOODS

You’re out for dinner with your family at a nice restaurant. You order the chicken Caesar salad with a side of garlic bread. You take a few bites of bread and then dig into your salad, wanting to save the rest of the garlic bread for later. But after a few bites of the salad, you start to feel stomach cramps and nausea. You can’t eat anymore so you go home, feeling sick for maybe an hour, maybe a couple of days. 
 

An infographic on the difference between celiac and gluten intolerance

This has been happening every time you have eaten something with gluten in it, for three weeks. You suddenly think of your friend who has the same problem when eating bread products. You’ve had your suspicions for a while, so you get tested. One month later, is it confirmed, you have celiac disease, a condition where the small intestine is damaged by eating gluten, which is found in bread and other products. Now you can’t eat anything with wheat in it.

“I was in a bit of disbelief, then I cried,” says Valerie Smith, who was diagnosed in May 2014 with celiac disease.

“I called my sister and then I had my last Big Mac for lunch and Wendy’s crispy chicken burger for dinner, before cutting gluten out for good.”

Gluten free bagels and hamburger buns

Her older sister, Andrea, reacted the same way after she was confirmed to have celiac disease in April 2008.

“Before I called anyone, I ate a Double Big Mac meal,” says Andrea.

“I sat in the car and ate everything, then I called my mom and told her the news, and I have been gluten free ever since.”

According to Health Canada, closely related family members are more likely to develop celiac if one family member already has the disease, so it’s not unheard of for two sisters to be diagnosed with celiac. Andrea had her first baby in December, a son Braydan.

Andrea Smith with son Braydan

“It’s up in the air if it has been passed down to your child. The best thing to do is to be aware. If your child complains of a stomachache, that’s not necessarily a reason to get them tested. They could just have a stomachache, but it’s a good idea to monitor it. The testing is very invasive, so you may want to wait till your child is a little older to do the test.”

The most accurate way to test celiac is through an endoscope biopsy, according to the University of Chicago’s website, cureceliacdisease.org.

Under an anesthetic, doctors will insert an endoscope down your throat to your stomach, and from there to the lower intestine and take a tissue sample, which will be tested under a microscope. The tissue will show if the lower intestines are damaged from ingesting gluten.

For Brooke Eby, waiting till she was older was not an option. In 1983, at the age of 17 months, Brooke was diagnosed with celiac while being treated at Sick Kids.

“My mom saw I wasn’t thriving. I was constantly sick, lethargic and my stomach was horribly distended constantly, while I had these very thin legs and arms.” Says Eby.

The doctor treating Eby didn’t know what was wrong with her; so he wanted to wait till she was stronger and then operate to remove her lower intestine, attach a colostomy bag and a permanent feeding tube.

“Thank goodness my mother kept fighting. It was an intern who figured out what was wrong with me by asking my mother the same questions she had been asked numerous times before. The intern went to the doctor and told them they knew what was wrong with me. The doctor and the intern bet a beer on it, because the doctor thought, ‘You’re an intern, what do you know?’ A biopsy on my intestine confirmed I had celiac disease and off to the gluten-free races I went.” 

Gluen free snacks in the bakery section at a grocery store

Eby plans to have her future children tested as early as possible before she introduces anything gluten. And the biopsy is her preferred choice.

“I had a scratch test done a couple of years ago for other foods and gluten was one of the foods they tested me for and nothing showed up. That shows the only proper way to diagnose someone with celiac disease is through a biopsy.”

Eby doesn’t recall the test because she was so young, but Andrea and Valerie remember.

“The biopsy scope was not fun, it was kind of scary,” says Valeria. “Knowing they were going to put me under and stick a tube with camera down my throat into my stomach was not easy to swallow,”

“It was scary. I really didn’t know what to expect,” says Andrea.

“I had a consultation first where they explained the whole procedure to me, then I booked the appointment for the biopsy. When I went in, they hooked me up to an I.V. to put me to sleep and I woke up in the recovery room where the doctor told me it was possible I have celiac, but he wasn’t sure.” A month later Andrea’s diagnosis confirmed she had celiac.

Gluten free snacks and bread

The Smith sisters have similarities in their experience, but different reasons led them to be tested for celiac. Andrea was sick for a year and a half from eating gluten in her diet, unaware that she was celiac.

“I’m hypersensitive, so I feel it once it starts digesting. I get nauseous and bloated and feel a lot of pain.”

Valerie began seeing a new family doctor, who asked about her family history.

“I’m asymptomatic, so I had no idea. After telling the doctor my sister had celiac going on seven years, he tested me just to cross it off and I came back positive. I had been ingesting gluten on a daily basis and never noticed a problem.”

Valerie does show mild symptoms now if she ingests gluten, but she still is unsure if it is a gluten attack at times. She will experience cramps, nausea and a headache.

Eby’s symptoms affect her differently.

“Within 20 minutes, I know something is wrong. My muscles in my back, shoulder and abs tense up and then I become physically ill for hours. It subsides to nausea and fatigue, which can last for days.”

If you live with someone who isn’t celiac, there are two options. If they are willing, they can go gluten free at home, which is the case for Valerie and Andrea. Or you can make sure your partner, or the person you are living with, understands what you have and keep your foods separate. It has become easier to shop gluten free, as many grocery stores are stocking gluten free items and stocking them in their own sections.

“I have my own toaster, butter, margarine, jam, anything that you could put on bread or put bread in. This is to ensure no cross contamination. All of my condiments are in a squeeze bottle so that no one can put a knife with crumbs in it,” says Eby.

“When going out, I only eat at restaurants I trust. I go and speak to the chef the first time and explain how sensitive I am with gluten. I ask them to prepare everything in a clean area, with new gloves and cleaned utensils. I build a rapport with the restaurants I visit, so I know they will do everything properly. I always remind the server ‘Can you please ask them to prepare in a clean area with clean utensils and gloves’ and I make sure to tip well. I have my go-to restaurants so it has worked so far.”

Gluten free baking items

The Canadian Celiac Association provides further information on how to maintain a safe and gluten free lifestyle for people who suspect or are diagnosed with celiac or gluten intolerance.