What’s It Like Living With Celiac Disease? When You REALLY Can’t Eat Gluten ( Special Guest Interview)

At a time when wheat and other gluten-containing foods are unfairly demonized I believe it is important to take a step to the side and learn from someone who is living gluten-free not out of choice, but rather as an absolute medical necessity. I am so thrilled to introduce to you fellow Torontonian Ashley, an impressive foodie and overall  cool cat who happens to be living with celiac disease.  I spoke with Ashley about what it’s like being diagnosed and living with celiac disease and her thoughts on the current state of public opinion on gluten and gluten-free diets. 

Let’s jump right into it!

Q1: You are obviously a lot more than just someone living with gluten free/ with celiac disease, so tell me a bit about yourself  ☺

Of course! You may know me as @celiacandthe6ix on Instagram where I showcase my gluten free food finds, travels and lifestyle. I actually work full time as an Enforcement and Outreach Officer for a regulatory body in North York. I studied law and sociology in my undergrad and later pursued a Master’s degree in public policy, with a focus on health. I recently bought a home in the city with my boyfriend and we also are currently raising our golden doodle puppy Frankie. In my free time I enjoy biking, baking and watching the Toronto Maple Leafs of course.

Q2: What was the period of time leading up to your diagnosis like?  When you knew something wasn’t quite right but probably didn’t know what.

The period of time leading up to my diagnosis was actually quite a confusing time for me. I was about 17 at the time and went through a period of unexplained weight loss despite not making changes to my diet or exercise routine. I also felt tired during class, despite getting proper amount of sleep. I felt nauseated after eating and couldn’t find a solution to the breakouts/rashes I would get on my neck. Time and time again my physician, who was quite uneducated on Celiac Disease at the time, kept telling me I had Irritable Bowel Syndrome but I didn’t quite buy that diagnosis. After falling ill on a vacation with my family I finally was able to convince my doctor to send me to an allergist. It was there that he started running a bunch of tests on me, including the Celiac Panel.

Q3: How did you feel when you “officially” knew what you were dealing with, did you understand right away what the consequences would be and how would it impact your life going forward?

That’s the thing. I honestly didn’t know what I was dealing with at the time. As a teenager, I still naturally wanted to be able to eat my chicken fingers and fries at McDonald’s (speaking of which, the fries at Canadian McDonald’s are actually gluten free if a separate fryer is maintained). At the beginning, there was a lot of trial and error in seeing what would make me sick or not. All I remember the allergist saying to me is that I would have to avoid gluten for life. I barely even knew what gluten was, but I eventually came to understand that a lifestyle change would allow me to heal and not cause further damage.

Q4: How drastically (or not) do you think it’s changed your life and your diet?

At the time of my diagnosis, it was actually quite difficult to grasp what exactly I was dealing with. In the beginning, there was no Facebook and limited literature available for me and my family. lThere was a lot of trial and error in finding out the hidden sources of gluten too. In my early days as a Celiac, I would definitely say it was quite restrictive, especially since restaurants weren’t well educated at the time. I got sick quite often back in the day. In the present, I feel that there is a greater awareness of food allergies and autoimmune disease like Celiac and for the most part, many establishments take it seriously.

Q5:What is the hardest part about living with celiac disease? The food you miss the most?

For me, the hardest part is worrying about cross-contamination. If an establishment fails to handle your food properly, it can make for quite an uncomfortable night out. Believe me when I say it happens, and when it does it’s quite unpleasant. I have a killer sweet tooth and being a foodie I definitely do wish I could eat the cookie dough treats and chimney cones I see on Instagram. I used to work at McDonalds back in the day and I think I may just miss the McChicken…or maybe the nuggets. I guess I’m much healthier without it right Andy? Listen, I come from an Italian family and nowadays you can find gluten free pizza and pasta just about anywhere, but there was once a time when this wasn’t the case. It’s kind of hard to come by arancini (rice balls) on the other hand, however my Nonna was up to the challenge and has mastered the GF variety!

Q6: What do you think the average person misunderstands about celiac disease? What kind of misconceptions do you encounter in daily life?

I feel like people assume that it’s an allergy, when in reality it is actually an autoimmune disease. I find a lot of servers will flat out ask me if it is a preference or an allergy? I sometimes don’t even want to bother getting into what gluten does to my intestines and correct them. I feel that although progress has been made, sometimes training on food safety just isn’t adequate.

Another one I’ve heard many times over the years, is the whole “Oh, you can have whole wheat instead right?”.  I cannot tell you how I cringe whenever someone has asked me that and the struggle to keep a straight face instead of losing my cool.

Q7: How much does it suck when people with celiac disease unknowingly ingest gluten?  How often does that happen? What’s it like?

Oh, it sucks alright. Happened to me recently at a fairly new and trendy thai restaurant in Toronto and again at a banquet hall that I was attending for a wedding. I can only speak for myself and how I react, but within half an hour after consuming gluten I generally need to excuse myself and wind up in the washroom. Other times I feel quite bloated and nauseous. Usually the next day I wind up feeling a bit sluggish too. I’ve heard through discussions with some of my other gluten free friends that sometimes they’ve been violently ill, whereas other times they’ve been asymptomatic but there still remains damage internally. Something that works for me is simply letting it pass through my system, while keeping hydrated with water and peppermint tea. Sometimes probiotics and a hearty bowl of soup with veggies also help to calm a queasy tummy.

Q8: What is the #1 change that people or organizations ( food related or otherwise) could make that would make your life easier?

To list all allergens on menu items instead of just the calories. I find that sometimes I’m reading something that looks pretty harmless to choose as a dish and the waiter informs me that it has gluten in it. A few restaurants I’ve been to already have separate allergy guides or arrange the menu so that there is also a vegan and/or gluten free section. In terms of organizations I think it should also be easier to read labels at the supermarket so that you’re not trying to spend 5 minutes wondering whether or not the product you want to buy contains hidden sources of gluten.

Q9: What is your #1 piece of advice for people out there living with , and potentially struggling with, some form of food sensitivity ?

Just remember that you’re not alone out there. There are a lot of people that are living with the same thing you are and we are one big support network. It is also not the end of the world, time and time again there are people developing amazing gluten free recipes so that we can enjoy items that we may not have been able to have many years ago. For instance, this summer a vendor at the Toronto Cider Festival, Holy Cannoli TO, brought some gluten free cannolis to the event. Prior to that, I hadn’t had one since my teenage years. There are also so many food items that are naturally gluten free without modification so I no longer feel restricted.

Q10: What are your thoughts on how gluten is portrayed in popular/social media?

I feel like there’s this misconception in popular/social media that going gluten free is synonymous with losing weight and that it has become the trendy thing to do. I’m no nutritionist by any means, but I’m pretty sure cutting out gluten is not the best way to lose weight. I’m sure you can likely speak to the reasons why some gluten might be necessary in a diet for those that are not celiac.

I also feel that sometimes people are overly harsh online. I once voiced a concern about a certain airline removing special diet meals aka gluten free, vegan, kosher, halal, etc., and some people were actually trying to imply that it’s not worth it to cater to gluten free people and that we were entitled. This boggled my mind as I would be willing to shell out extra cash to order a special meal in advance not demand that the staff always have something available for me to eat during the flight.

Q11: In your experience,Are there any positives associated with being diagnosed with such a severe condition? New foods you have learned to love, taking your nutrition more seriously?

Of course! Since starting my account earlier this year, I’ve met so many new friends from Toronto and beyond. Social media is so powerful these days. You can find people living in countries and cities you want to travel to and have them send you their safe spots to eat, it’s actually quite amazing!

I have to say that as of late I have been taking my nutrition more seriously. As I mentioned previously, I do have a sweet tooth but I’ve been trying my hand at baking cookies that are vegan and do not contain refined sugar. I eat mostly white meat and fish but the rest of the time I do try to eat only plant based meals. I think my new favourite foods are spiralized vegetables, especially zoodles (zucchini noodles). I work across from a Whole Foods and despite my boyfriend’s wishes I do shop there quite often. Hopefully my body will thank me one day!

Q12: Anything else you’d like to share that hasn’t been touched on?

Do not be afraid to travel as a Celiac! There are so many blogs, social media pages and websites dedicated to finding gluten free food anywhere in the world. Do your research ahead of time and just enjoy the different culinary tastes that your travels have to offer. Trust me, it’s worth it!

 

Thanks for taking the time Ashley…… you rock and this interview was super insightful for me as I am sure it will be for all of my readers.

Until next time,

Andy De Santis RD MPH

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