May is Celiac Awareness Month.
What do you know about celiac disease?
You are right if you said it’s a disease triggered by eating gluten. It’s a chronic digestive and immune disorder that damages the small intestine.
According to the Celiac Disease Foundation, 1 in 100 people worldwide have celiac disease, but only about 30% are properly diagnosed. And if left untreated, it can lead to serious health problems such as type 1 diabetes and multiple sclerosis, anemia, osteoporosis, infertility, heart disease, and intestinal cancers.
Someone with celiac disease must be careful how their food is prepared and handled to avoid cross-contamination because even a small particle of gluten can cause intestinal damage, and it could take months to heal. Let’s face it, wheat, barley, rye, and malt seem to be in the food you least expect, making it tricky for someone with Celiac to enjoy a simple treat others might take for granted.
I spoke to romance author Jennifer Lazaris about her diagnosis and her challenges.
Charlene: Celiac disease can be diagnosed at any age. When were you diagnosed?
Looking back, I had vague symptoms of celiac disease / gluten intolerance as a teenager, but it wasn’t until I was in my twenties that it got more severe. I knew something was going on that wasn’t right. It still took some years for a diagnosis after that. What finally led me to the doctor was that I was eating clean, exercising regularly, and had lost 25 pounds, yet I couldn’t climb the stairs without extreme exhaustion. When I came home from work, I’d have to take a two-hour nap and couldn’t even think of going anywhere afterward due to being so tired. But the kicker was when I started getting non-stop heartburn. I mean, it was absolutely non-stop. I always had to have a bottle of Pepto Bismol on hand. When I was diagnosed and gave up gluten, all of those symptoms faded completely. I felt like a new person!
Charlene: Do any other family members have celiac disease?
I have a cousin on my mom’s side who has celiac disease and a cousin on my dad’s side who has a gluten intolerance. But as far as I know, I’m the only person with this issue in my family.
Charlene: My daughter has celiac disease, I’m sensitive, and my other two children and husband are not gluten-free, although I do make a lot of GF meals. For this reason, I have two ovens, two toasters… what’s it like at your house? Is your husband gluten free? How do you figure out meals?
My husband is not gluten-free, though he has no issues eating any gluten-free foods. We do have two toasters, but that’s about as far as I take the food separation. Also, if something is used by both of us like creme cheese or jelly, he will take it out and put it on a plate and then spread it on his toast from there so he’s not dipping crumbs in anything we share. I take a lot of care in cleaning up crumbs, haha. Sometimes he just grabs dinner on the way home, or if I’m making it, we eat gluten free. He’s supportive, and I try to not keep him from having his favorite foods, as long as I don’t get contaminated in the process.
The one challenge for my daughter is when going to a friend’s house for a birthday celebration, she will bring her own food, so she knows it’s safe. What’s it been like for you when dining at someone’s house?
I’ll be honest, this is the absolute WORST for me, unless I’m very good friends with someone and they know my issues already. I sometimes feel rude bringing my own food (though I shouldn’t; your daughter is smart!), especially if someone insists something is gluten free. Sometimes I will bring safe snacks. I will try and get out of going places because I hate dealing with this kind of thing. Or if I have to go, I will eat a huge meal beforehand. People don’t always realize the level you need to go to in order to not be cross-contaminated. It depends on the people I’m visiting, too. If they have someone in their family who has Celiac or allergies, I know it will be a safer experience than with someone who isn’t used to dealing with something like this on a regular basis. My own family tries hard to help when I visit, but even they don’t always remember that at birthday parties, you can’t scoop cookie dough ice cream then use the same unwashed utensil to scoop my plain vanilla. It’s a challenge, that’s for sure!
I find dining out to be challenging. People who don’t know about the disease are unaware of the food prep and what gluten-free means to those with Celiac. Often, I’m educating them. What has your experience been like?
Ah, dining out. I think the hardest thing for me is dining out in a social situation with friends because I need to go somewhere that actually has options that won’t make me sick. That can be pretty limiting. If people are just going somewhere to chat and snack, I’ll usually suggest Starbucks because at least they have a few little wrapped treats. It’s easier for me to eat out with my husband because I have my go-to places where I feel safe and don’t feel as guilty asking him to compromise because he’s used to it.
As for dealing with the whole true dining out experience, I’m someone who doesn’t like calling attention to myself, but it’s gotten easier over the years to explain my issue and ask about fryers, prep, and contamination issues. But I still don’t like having to do it. I’ve had good experiences dining out for the most part, and I think restaurants and servers are getting accustomed to more people having food challenges and allergies, so it’s not as difficult as it might have been ten years ago.
Do you have a favorite restaurant?
I don’t eat out a lot because of this, so for me, I don’t have a real, true restaurant that is a go-to. I love Five Guys Burgers and Fries because I feel safe eating there. I know they have dedicated fryers, and I can get a burger without a bun. Sometimes I’ll bring my own bun if I want a real burger experience. I also love Subway’s gluten free bread. I will watch them do everything in front of me to make sure I’m not getting cross-contaminated, but usually only feel comfortable eating the meat and cheese and will skip the veggies because of all the crumbs flying around. The veggies aren’t covered, so that’s riskier. As for a real restaurant, I used to love going to Jack Astors, but haven’t been there for a while. I had good dining experiences there, even with having Celiac. I’m looking forward to trying Burgers Priest, as they have a lot of gluten free options, and I also love New York Fries.
What’s your favorite GF dessert or gluten-free brand?
I don’t eat a lot of desserts anymore, but believe it or not, my favorite go-to gluten free treat was President’s Choice store brand gluten free cupcakes! I haven’t found them in ages, but I loved them, and they were reasonably priced. Very tasty! I also love the Marshmallow Dream bars from Starbucks. As for my fave true dessert, there’s a bakery near me that makes EXCELLENT gluten free cakes, so I usually end up going there and grabbing something. I also love making my own banana bread and muffins with chocolate chips.
Thank you, Jennifer! It was a pleasure talking to you.
You can find out more about celiac disease https://www.celiac.ca/about-the-cca/who-we-are/
About Jennifer Lazaris books https://www.jenniferlazaris.com
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