A few things about her:
She likes to read, draw and swim.
She takes dance lessons (hip hop) and plays on a basketball team.
She speaks French.
She has a younger sister who is the bomb.
She loves her tiny dog Chiquita.
Her favourite food is rice (brown and white)—in sushi, fried or just plain steamed.
Her favourite subject in school is math.
She has celiac disease. She was diagnosed when she was three.
On the morning of her 11th birthday, Lily woke up with a stuffy nose. When asked what she thinks it means to have a cold on her birthday, she replied, without missing a beat: “It’s going to be a SICK year!”
That’s Lily, always making lemonade out of lemons. See for yourself.
What is celiac disease?
It’s a disease that affects your gut [specifically your small intestine]. What happens is when you eat gluten, it doesn’t sit well with your gut and your body gets angry and tries to get it out. Some people have symptoms and there are many different kinds of symptoms—I throw up, get bloated and get bad stomach aches. Some people don’t get symptoms, but it’s still doing damage inside of them.
[For a more complete definition of celiac disease, go to www.celiac.ca]
What is gluten?
It’s a protein that’s in found in certain grains, like wheat, rye, spelt, kamut and barley. When I was younger my mom and I made a sign out of stickers with these words and taped it up in the kitchen to help me learn how to read them. It’s really important to read ingredients and not just assume something is safe to eat, unless it’s a fruit or vegetable of course.
Do you remember when you found out you had celiac?
I was only three, so I didn’t really know what was happening to me. I was getting sick (barfing) every night and I had lots of stomach pain. Then I remember one day we were at the doctor’s office and I was getting my blood taken. That’s how we found out I have celiac disease. After I stopped eating gluten I felt much better. My hair started to grow and I started to grow.
Was it hard when you first went gluten free?
I don’t think I really noticed a change in my diet, except I remember asking my mom for the Puffins cereal I loved and she said “no more Puffins” and I got really upset with her. But I don’t remember my parents having to say “no” a lot. I just remember them giving me food to eat and I was happy.
How do you feel now, after being gluten free for eight years?
I feel fine.
Your hair is really long now.
Yeah! It keeps growing!
What’s it like to eat gluten free all the time?
I don’t really notice. I don’t really remember eating gluten. Sure, I see my friends eating it, but I feel like I have food that tastes better, I bet, and it looks better. You can always find something that is gluten free, so I can eat just about anything. Basically I don’t think that my diet defines me. It’s part of me, but it’s not me.
Are there ever times when you wish you didn’t have to be gluten free?
Not really, because I can basically have the same foods as everyone else, except they’re gluten free. There’s always a replacement. Sometimes I do feel sorry for myself. Sometimes I want to eat something with gluten, but then I remind myself that somewhere in the world there is a gluten-free version of the same thing. I just have to find it. Plus, I just think about how sick I’ll get if I eat it. It’s not worth it.
When was the last time you got glutened?
I was in Florida at a hotel and they said that there was a gluten-free buffet table and that everything would be safe. There was even a dedicated gluten-free toaster! I ate a bagel, muffin and fruit. At the beach, my stomach starting hurting but I sort of ignored it and didn’t think much about it. And then I started feeling really nauseous and told my mom. My stomach started to really hurt so we went back to our hotel room and I started barfing all over the place. Then I took a nap.
Do you prefer eating in or going out?
Eating at home is so easy. Our house is totally gluten free because we don’t want me getting cross-contaminated or eating something with gluten by accident.
I love going to restaurants and I have my favourites. But sometimes when we eat out my parents make a big fuss about things. I know they’re just trying to make sure the food is safe for me, but it embarrasses me.
What would you tell a friend who finds out that they have celiac disease?
That it’s not that big of a deal. You can always adapt to it. In a few weeks, you’ll think it’s natural.
I’d also recommend some bakeries. Almond Butterfly has the best bagels and cupcakes. Bunner’s has the best cinnamon buns. Cock-A-Doodle-Doo has the best muffins. Sorelle and Co. has the best donuts. And I love Tori’s cupcake with a donut on top.
Do you have any friends who also have celiac disease?
I have a few friends who have celiac disease. We tell each other about great restaurants we’ve been to.
What are your top 3 restaurants?
I can’t name just three. There’s Pukka for Indian. Edo for sushi (they have gluten-free tamari!). Mad Mexican for nachos and tacos. Live has the best burritos. For brunch I love to go to Cocoalatte, Public Kitchen and Hibiscus (best crepes!). And we recently discovered Basil Box, Asian food that is totally gluten free and so yummy!
What do you love about Gluten Free Garage?
I can go to all the different vendors and eat whatever I want without having to ask if their food is gluten free—I know it’s all safe! But the day is not just about finding yummy food that’s gluten free, it’s also about letting gluten-free people know that they’re part of a larger community and they’re not alone. I feel very proud of my mom and happy that she did this for me and for all the gluten-free people in the world.
What are you doing this year at Gluten Free Garage?
I’m very excited to be a guest speaker! And even more excited that Almond Butterfly Bakeshop is partnering with me to do cupcake decorating! I’ve wanted to be a speaker for a few years and my mom kept saying wait until you’re older. This year I finally convinced her that I can do it. I’m older now and a lot more responsible. Every month at school I have to present a book report to my class and it’s made me a better public speaker and more confident to share my ideas.