In a celiac’s shoes

In Features /

Kai Benson decides to live like a celiac for one week. Can he do it?

About celiac:

Before last week, I knew almost nothing about Celiac disease. I knew celiacs couldn’t drink beer, and I suspected something to do with bread, but that was about it. Wanting to challenge myself and learn more about the disease, I decided to research it and live on a celiac diet for a week.

Celiac disease is an autoimmune disease where your immune system attacks the small intestine in the presence of gluten. Gluten is a protein found in wheat, barley, rye and triticale (wheat and rye hybrid). The symptoms can be varied and often vague, such as chronic fatigue or irritability.

Jim McCarthy, executive director of the Canadian Celiac Association (CCA) says that the amount of celiacs is higher than ever, but many remain undiagnosed, although it is improving. He says about 1 per cent of Canadians are celiac, but another 6 per cent have gluten sensitivity, which is a different problem with the same solution. “There are no drugs or surgical cures, just a gluten-free diet for life,” he says.

Ontario is also the only province in Canada that doesn’t cover the tests for Celiac disease, which can run at about $200 a pop. As a result, many people diagnose themselves as celiac, which can be problematic, according to McCarthy. “If you’re right and you go on a gluten-free diet, then fine,” says McCarthy. “But if the condition is something else, you may not be properly diagnosed for whatever it is, and you’ll have to go back on a regular diet before finding out what it is.”

He says the CCA has been working for over two years to get Ontario to cover the tests, with no success. Any new test being covered first has to go through an assessment process from the Ontario Health Technology Advisory Committee, which has to recommend the change to the government. In December 2010, it recommended that there was sufficient medical and financial reason to offer the tests.

And the challenges of living a healthy gluten-free life add up. “Food is more expensive than normal, and often hard to find.” Avoiding hidden gluten sources is also a challenge, he adds.

I embarked on my week of gluten-free living with that in mind.

Shop like a celiac:

In preparation for my week of living gluten free, I let the food situation in my house deteriorate considerably. I made sure to eat all my pasta and bread so it wouldn’t be around for me to eat while drunk, desperate or forgetful.

So when I wake up on Saturday morning — okay, more like early evening — the only food I have in my house is half a bag of frozen corn. After a nice bowl of breakfast corn, I venture over to my local food store to replenish my stocks with gluten-free fare. Websites such as celiac.ca had told me to avoid anything made with wheat, rye, barley or triticale. At first that didn’t sound too difficult. I would avoid eating bread for a week and be on with my life. Piece of cake (gluten-free, of course). I would soon learn that the life of a celiac is one of vigilance and paranoia.

The fresh produce section greets me as I enter the store in the style of every grocery store ever. Great, I think, no gluten here—I’ll grab some carrots, maybe some fruit, and we’re off to the next section. Leaving the section, I noticed some dip that would go well with carrots, so I check the ingredients.

While I don’t see anything I recognize as wheat, rye, barley or triticale products, I begin to realize that I am very new at this and can’t remember most of the other things listed online. There’s very little chance that there would be “hidden” gluten without also having some kind of warning label, but unfortunately, products do not have to be labeled as containing allergens, gluten or silicate until August 2012. Until then, celiacs and other gluten-free folk will have to remain vigilant. Back on the shelf it goes.

I would later learn that one of the “foods to question” on Celiac.ca is salad dressing, so for all I know I did the right thing. Salad dressing and dip are similar, aren’t they? My hatred of this project begins to grow, as I’m a big fan of certainty and find this sort of helpless ignorance depressing.

After the veggie section comes the bread section. I walk past to the meat section, defiantly ignoring my desire for bagels. The meat section is about as easy as the produce section. Obviously, I stay away from anything breaded, but that’s not the type of stuff I usually eat anyways. Some fresh chicken breasts, some bacon and I’m off.

Later, I’ll learn that many meat products are actually in that frustratingly ambiguous “foods to question” category on celiac.ca. Processed meats, luncheon meats and vegetarian meat substitutes can all contain gluten and should be checked on an individual basis. Five minutes into shopping and I’ve already been reduced to relying on luck to avoid gluten.

The rest of the store is where I lose much of my confidence. Almost everything could have gluten in it I think — yogurt, chips, crackers, french fries and oatmeal — all stand out in my mind as possible sources. Though I’ve never eaten lentils before, I pick up a two-kilogram bag because I seem to recall those being a good substitute for gluten-free diets. Turns out that’s for vegetarian diets lacking protein, but at least lentils are gluten-free and I’m trying new things.

A lot of daunting aisles with pasta and processed food come next, and I walk past all of these with the determination of someone way too lazy to read the labels on everything. However, I find a gluten-free section in the last aisle, and pick up some gluten-free cookies and breakfast bars. They cost much more than their glutinous counterparts. A package of gluten-free cookies: almost $5 for 250 grams. A comparable no-name package: $2.50 for 350 grams. Buying gluten free got me almost 3 times fewer grams per dollar.

I head home to see how I did. In addition to what I already mentioned, the website told me that the most common substitutes for wheat and grains are corn, rice and potatoes. I bought none of those (though I still had my leftover frozen corn).

I had managed to avoid gluten, but fell into the other problem celiac living brings: I hadn’t bought any decent starch sources. The potatoes and rice would have to wait. For now, I had some vodka to buy.

Party like a celiac:

I arrive at a buddy’s apartment with a 26 ounce bottle of vodka and some fruit juice. I mix a drink as I explain to the six or eight guys watching television that I can’t drink beer tonight. I’m trying to live like a celiac for a week.

Hard liquor doesn’t contain gluten because the distillation process removes it, and wine is gluten-free as long as wheat was not used in the process of sealing the barrels, but beer almost always contains gluten. This was the single most troubling fact, for me, when I agreed to do this article. With the lowered inhibitions that come from getting as egregiously hammered as I do, there was a possibility I would be chugging beers and eating gluten-rich fast food by the end of the night. I didn’t, but the internal struggle was akin to fighting a pack of ferocious wheat-tigers. I don’t think anybody would suspect the white powder I’m addicted to is flour.

Shawn Sutherland, a former Ryerson student celebrating his birthday that night, says he is celiac and laughs, taking a swig of Canadian. I don’t know Shawn, so I immediately question him on how he drinks beer with the disease while also wondering why anybody would fake it. “I trained myself to drink it. I guess I built up a tolerance,” he says. Our mutual friends corroborate his story, assuring me he is celiac. “I remember that one time when you drank one Guinness,” someone says, speaking of before the supposed tolerance. “You were on the floor like an hour later.”

Everyone laughs as they remember this, making me feel uncomfortable and left out but convincing me that he probably does have some form of the disease. This new information tempts the beer-swilling demon that lives in my brain.

“You can have a beer if he can,” says the demon. “Nobody specified which celiac you have to live like.” I tell the demon to be quiet and carry on drinking my vodka. Several drinks and a pirated copy of the Charlie Sheen Roast later, Shawn insists that we go out to a bar.

Within ten minutes of getting there, my friend Tyler buys me a beer. This was not done maliciously, but rather because everybody had already forgotten my experiment. Actually, I almost had too. I had the beer in my hand before realizing my error and giving it back.

Many rum and Cokes later, we leave the bar after last call. We cross the street to get some pizza, much to my displeasure. If you want to know what it’s like to quit smoking, try sitting in a pizza place while drunk and gluten-free for no good reason. I guarantee you it’s harder to resist the pizza than the cigarette. Between the awesome smell of fresh pizza, the knowledge that I could get away with eating a slice and my friends taunting me about not being allowed to, I’m going pretty crazy after about 10 minutes. After I’ve had about as much as I can take, I decide to wait outside while they finish up.

I make it all night without cracking, and feel very proud of myself the next day, despite a rapturous hangover. We decide to go for a bit of high-quality hangover food at MerryBerry on Parliament Street. It is the first time that I realize almost everything has gluten in it or with it when you eat out. The night before, I realized all fast food had buns or crusts, yet higher quality fare is almost as hard to navigate. Most lunch dishes are sandwiches, burgers or wraps, or soup with a side of bread. It’s all very frustrating.

I order a salad with peaches, bacon and pecans, and probably-celiac Shawn orders the beef stew, which comes with a side of bread. He tells me he’ll only eat a bite or two of the bread. I ask him what happens when he eats too much. “I just get rashes mostly,” he says, gesturing about his body and arms. “But I know this girl whose stomach swells up when she eats any.” His info checks out: swelling or bloating is a common symptom, and the rash Shawn experiences could be Dermatitis Herpetiformis, a symptom suffered by a small percentage of celiacs.

The adventure of partying gluten-free ends there, and I feel thankful. Thankful that I managed to make it through the ordeal, and thankful that I normally only have to worry about one poison I’m consuming.

I’m on day two, and the vigilance is exhausting.

Dine like a celiac:

On Thursday, I meet Ryerson Masters student Adrienne Comars at the Oakham Café to have coffee and find some gluten-free dinner. Comars has been on a gluten-free diet only slightly longer than I have, as she was just diagnosed with celiac disease about a week ago. Her mother and sister have the disease, however, so she’s been familiar with it for most of her life.

“We didn’t eat wheat pasta or the typical pastas that families eat because there’s always been this sensitivity issue,” says Comars. When she was six her mom got really sick while pregnant with her brother and was diagnosed celiac. Her younger sister was diagnosed from almost the time she started eating solids. “I think I was undiagnosed for so long because I don’t have any of the physical characteristics that go along with it,” she says.

She says she’s been sick her whole life, unable to put on weight and chronically low in energy. She was tested for a variety of ailments, including celiac, but never found an answer. After returning from a three-month trip to India, she was finally diagnosed with the disease. The trip increased her suspicion of being celiac, because of the largely gluten-free diet she ate there. “I had to get a bunch of shots to go over there and everyone was like, ‘you might get really sick, watch out,’ but while I was there I got really healthy,” she says. She gained ten pounds, her skin cleared up and her energy levels went through the roof. But when she returned to Canada she got sick again.

She found out she had something called complete villious blunting, which means that the walls of her small intestine are essentially flat, hindering the absorption of important vitamins and minerals. “I have little to no iron in my body, little to no B12 and I have little to no folate.”

We browse the menu at Oakham while we drink americanos and discuss how little choice celiacs have at restaurants.“Nope…nope…Yeah, there’s almost nothing on here I can eat,” she says, before excitedly noticing the circled “G” by some of the items, indicating gluten-free dishes. “Gluten free toast, no way! Way to go, Oakham Café.”

She can eat six things on the menu, which is pretty high. “Tim Hortons? That’s a complete write-off.” We looked over the Café’s selection of gluten-free bars and snacks, and agreed that Oakham is a fairly celiac-friendly restaurant, even if it’s not perfect. The International Living and Learning Centre (ILLC), Pitman Hall or the Ram in the Rye do have gluten free food, but most of it is coincidental. “This is definitely one of my favourite spaces on campus,” Comars says. “Both in terms of atmosphere and having an inclusive menu.”

Inclusive menu or not, Comars and I decide to have dinner at an entirely gluten-free restaurant. We decide on Hibiscus, a tiny vegan and gluten-free restaurant in Kensington Market. She had heard about it through a friend. On the walk over, we talk about how nice it will be to be able to order anything on a menu without worrying about eating gluten, especially since even gluten-free dishes can be contaminated if the kitchen serves gluten dishes as well.

Hibiscus primarily serves soup, salads and crepes, but also offers snacks and treats to take away. There are about a dozen different types of crepes, both savoury and sweet. Comars goes for a savoury crepe with goat cheese, tomato and basil, while I get a sweet crepe with strawberries and kiwis.

I find the food to be pretty good, if not astounding, but Comars goes crazy over it. I would probably be more excited about it too, if I wasn’t already counting the days until I could eat wheat again. “I guess for you, it’s temporary, it’s like, ‘ha-ha, next week I can start drinking beer again,’ but for me, that’s not going to happen,” she tells me.

As we eat the crepes, she strikes me as someone who will do fine on a gluten-free diet, or at least much better than I did. She loves quinoa (pronounced keen-wah, a cereal-like grain); I’ve never had it. She loves to cook and can figure out gluten-free meals, I mostly eat sandwiches and pasta.

After the meal, we decide to see if Kensington Market is a progressive enough place to have gluten-free beer in its bars, and are promptly shut down. It’s one of the things she misses most — having a pitcher of beer with friends. And until more gluten-free options are more readily available, she’ll just have to wait. But with all its difficulties, the gluten-free diet has worked for her, even in the short period of time since she was diagnosed with celiac. “It’s only been a week and I’m noticing significant changes in my body,” she tells me. “My skin has cleared up and my energy levels are high. I’m able to not fall asleep in class now.”

Back to bread:

One thing I kept in mind as I did this was the fact that I didn’t actually need to be doing it. It’s one thing to avoid gluten, but quite another to actually need to avoid it. Before I began, I sought counsel from an actual celiac. I was cautioned that I couldn’t really say I truly lived the celiac life, because I didn’t have to be afraid that someone would mess up my order or accidentally cross-contaminate my food by accident.

So I kept that in mind. It was hard at times, and annoying to actually track what I ate instead of eating whatever I wanted, but at least I didn’t have to be afraid of anything. There was nothing at stake.

I made it through the week with only one screw-up: a single bite of cheesecake in an absent-minded moment. Why does everything have a damn crust? But other than that, I was strict about my gluten consumption. I was pretty low energy, partially due to a messed up sleep schedule and partially due to a lack of complex carbohydrates in my diet. I should have been eating alternative grains like quinoa, but in all honesty, the majority of my energy for the week came from the sugar in coffee and Coca-Cola. If I lived like that for much longer, I probably would have been able to write another article on living with diabetes.

As celiac disease becomes more recognized and better diagnosed, hopefully we’ll see more options for celiacs in grocery stores, restaurants and bars. Comars would surely like to be able to go out for a pitcher of beer again.

I gained a lot of empathy for people with this disease, a major improvement over not even knowing what it was a few months ago. If you know a celiac, give them a hug and tell them how real beer and bread aren’t that great, anyways.

Comments

  1. Having been diagnosed with celiac two years ago, I can truly say the first 6 months were the absolute worst. After that, I became so used to not eating gluten that it no longer bothered me when my husband ordered dinner and a loaf of hot crusty bread came with it. I now find that I enjoy eating burgers with no buns better than when I find a restaurant that offers GF buns. The celiac diet is certainly not an easy one. Yes, you do have to have a certain amount of paranoia to deal with it. You MUST check the label on everything, as there are lots of hidden sources (like vitamins), etc.

    All in all, I think I am definitely healthier because I no longer eat all those carbs and my body isn’t trying to kill me.

  2. I really appreciate your article and going gluten free to see what us Celiac’s experience! It’s difficult to deal with some social situations, as you noted. My family and friends see me go through the disappointment of not being able to share pizza. Never thought of it like trying to quit smoking, but that is so true!

  3. Kai. Thanks for the good & funny read this morning! I am gluten intolerant. For me, gluten brings on a sever asthma attack & leaves me short of breath and coughing for weeks. I’m a hardcore label reader, even on items I’m used to buying cause manufacturers are always changing their ingredient list. The lable changes in 2012 will be a blessing but I’ll always be a skeptic & still read labels just in case. Eating out is a nightmare. I hate it but I do double check the waitresses & even talk to chefs just to make sure their items are truly GF. Celiac disease & Gluten intolerance is sloooowly getting recognition & articles like yours truly help. Thank you.

  4. I can only be an environment where others are eating wheat for a couple of hours before I get symptoms even if I don’t eat anything. Did you check toiletries, clean the light switches and door handles, scrub your hands after handling a library book…total vigilance or total isolation – you can see why some people get depressed and even suicidal.

  5. You should tell your friend Shawn he may not have built up a tolerance to it as much as he thinks. My doctor told me when I first got diagnosed that if gluten gets in my system some how (whether purposely or accidentally) and I do not get sick (like nausea or a rash or whatever other symptoms one may get) that it still eats away your small intestine. It can still be doing damage to his body which is the worst part about the disease. When I was diagnosed it took 4 years to feel better because I had been undiagnosed my whole life. It’s hard to live with but it’s nicer than being sick all the time. Thanks for your article!

  6. Thank you so much for doing this experiment if not for your own knowledge, but to make your readers realize what it is really like to live with Celiac Disease.

    I was diagnosed with Celiac Disease in 1981 and literally know no other way of living but gluten-free. It is so hard to make people understand that you literally need to think before you eat/drink/etc every day of your life. Of course it becomes routine after a while, but one slip up and you will be running out the door faster than you can say “gluten-free”.

    Great article!

  7. My husband has celiac, I just have an intolerance to gluten but also to things like potatoes, some fruits, rice, peas, corn, eggs, milk, soy, almonds, lentils and many, many more. I also have reflux disease so no tomatoes, acidic fruits, coffee, tea, wine etc. so those with celiac don’t have it that bad!

  8. Thanks for the story on living with celiac. Well done! One thing many of us get is addiotional food intolerances. Dairy and soy are fairly common but there are many other possiblities, like nightshades, eggs, nuts etc. Our systems seem to be more sensitive to many foods and can react badly to them.

    Your friend with the DH (dermatitis herpetiformis) might indeed be hurting himself. DH attacks the skin, but can also damamge the intestine. They say that people with DH and celiac tend to have lesser GI symptoms. But that doesn’t mean it is harmless for them to eat gluten.

  9. My cousin just got diagnosed with Celiac’s disease. It was very life altering for her and difficult, because as many have said you really do have to think before you eat. The other day she ate a donut without realising it and she has told me that gluten-free food is expensive. Anyways, I really do appreciate this article, as I had never heard of this disease before.

  10. I’m one of the other 6 percent with non-Celiac gluten sensitivity. It was an emotional blow at first, but I’ve been learning to accept it and find healthy alternatives to my old gluten full life.

    And there is such a thing as good gluten free bread. You have to make it yourself, but even my non-gluten free friends raved about it. Just google “Isaiah’s Bread”. The recipe is by Silvana Nardone and was published by Saveur.com.

    They are also coming out with more and more gluten free beers, too. You can read a review of some of them at Adventures of a Gluten Free Mom (http://www.adventuresofaglutenfreemom.com/2011/07/a-gluten-free-beer-showdown/gluten-free-beer-review/)

  11. Excellent article qui relate bien quelques difficultés d’un malade coeliaque. J’ai été diagnostiqué il y 15 ans et une certaine routine c’est déjà bien installée. Malgré l’habitude que j’ai de lire toutes les étiquettes et de prendre beaucoup de précautions, il m’arrive encore de manger malgré moi du gluten. Dans la dernière semaine j’ai été malade deux fois à la suite de repas dans les restaurants. Heureusement aujourd’hui j’ai pris un excellent repas dans un restaurant sans gluten “oui oui” sans gluten dans la ville de Québec, il s’appelle le Saumum. Merci pour cet article. Mes excuses d’écrire en français, mais si j’ai été capable de vous lire en anglais vous devez être capable de me lire en français.

  12. I’ve been a Celiac for 31 years. Find the hardest about the disease is the social aspect. Also travelling can be very difficult to find gluten free food.

  13. I have been diagnosed Celiac for one year and have been on a strict gluten free diet since day one. I believe the average time for a proper diagnosis is 12 years. I am not sure how I did the diet right away, I am amazed at how vigilant I have to be. If it were not for my wife I would have a much tougher time. People who think it is nothing but “don’t eat bread” seem to think this is easy. Or don’t think you are sick even though I had to crawl up and down stairs as I was so weakened. Restaurants that say right away they know all about it are the ones that make me sick, literally. They are not as vigilant as I am. I get sick from my dogs food. While training her I may breath in her food and digest it.
    Fortunately it is getting easier for us and I am grateful to all of the understanding people and grocery stores and in particular to Kai Benson who made the effort to live it and write about. Thank you

  14. The problem I find with being gluten free, is that if you have the packets of bread or rolls, you need to freeze most of it, as there would be a lot of waste.

    I am not overly fond of bread at the best of times, though have not had any problems going gluten free.

    One thing I will agree with is that the price of most of the products are much more expensive. Strange that when things are healthier they become more expensive.

    The health improvements are noticed very quickly, specially when everything you eat was making you ill.

    Although if can be hard for family members to understand about contamination issues, and things having to be cooked separately.

Leave a Comment