Gluten Free Celiac Disease

Gluten Free Influencers Spill for Celiac Awareness Month

May is Celiac Awareness Month and to help shed light on celiac disease and other gluten intolerances or allergies, we’ve teamed up with our favorite gluten free bloggers to talk about their experiences going gluten free. 

We’re all familiar with their drool worthy recipes and Instagram photos, but let’s find out what it was really like to learn they could no longer eat gluten? Nicole Cogan of @nobread, Jackie McEwan of @glutenfree.followme, Erica Dermer of @celiacandthebeast and Lexi Davidson of @lexiscleankitchen talk about what it was like to go gluten free, the good, the bad and the ugly.

1. What made you suspect you had a gluten allergy?

Lexi: It was pretty clear to me that all of the ailments I was experiencing weregut related, so I decided to look at foods that cause inflammation and foods that can prevent proper digestion.
Erica: While I was sick a lot with general malaise as a kid, it was nothing that we thought was related to celiac disease. I thought celiac disease was all about endless bathroom trips, and that wasn't me.
Nicole: I had the flu twice a year, strep throat once a season, and unexplained illnesses that appeared out of nowhere and lasted for different lengths of time.
Jackie: My sports doctor had all of his patients take a food intolerance test, and gluten came up in my test results. I was like, what’s gluten?! Looking back, my diagnosis made a lot of sense because I would get sick at least once a week in college.

2. What was the process of finding out you were allergic to gluten?

Erica: The right process is to get a blood screener, get an upper endoscopy while still eating a gluten-full diet, and then go gluten free once you're diagnosed with celiac disease…. I was told to "just go gluten free" and then had blood tests and endoscopies that showed nothing. Because of that they gave me drug after drug, trying to fix me, when it was celiac disease all along.
Lexi: [I] haven’t ever decided to be tested. When I found out I was sensitive (food sensitivity panel), along with having a bacteria overgrowth (Candida) that feeds on yeast -- that was enough for me.

3. What was your emotional reaction to the results and finding out you had to go gluten free? 

Erica: I had to go through the mourning process, losing foods that I loved, and the freedom to eat whatever I wanted, wherever I wanted. I felt trapped in my home and my kitchen - I couldn't travel without anxiety, or eat without anxiety outside of my home. Thankfully, that's changed, but it was a very big adjustment for me. 
Jackie:  I was incredibly overwhelmed when I finally found out that gluten was making me sick. I didn’t even realize I was sick!
Lexi: My now husband Mike literally didn’t think I could do it! He was like, “there’s no way you aren’t going to eat the bread basket at dinner!” But I was committed.
Nicole:I cried. Scratch that. I sobbed. I started going over everything I ate in a day, and gluten was a staple component in each meal.

4. What was the learning curve like and self-education process of what you could and could not eat? What resources did you use?

Nicole: I quickly learned that gluten was in a ton of dressings and marinades, so I figured ordering or cooking everything plain or “simply grilled with olive oil” was the way to go.
Jackie: I did a ton of research on what foods had gluten in it, what foods were gluten-free, and all the grey areas in between.
Lexi: Reading labels and learning hidden little names for things was important!
Erica: I had to learn how to help my body recover from years of malnourishment and nutrient deficiency.
Jackie: I quickly learned that being gluten-free wasn’t just about avoiding bread. Gluten can hide in sauces, and you need to be aware of cross contamination. I learned that I could only eat food in a dedicated gluten-free fryer. At first, my family and friends didn’t really understand what it meant to be gluten-free. They would say, can’t you just try a bite of this?! It takes time, and now they fully understand.

5. Did you struggle with the transition, what were the surprises along the way (i.e. things you couldn’t eat, difficult from family/friends/waiters etc)?

LexiFamily holidays were initially more challenging, because my sweet 94-year-old nanny didn’t understand why I wouldn’t eat her famous meatballs!  
Erica: I found out that people judge you a lot based on how you eat. Even family members thought I was over the top, asking about cross contamination while dining out, or not eating foods that other people prepared, or even gluten-free cupcakes made in a non-gluten-free bakery. They think I'm uppity, but once they realized it was because I was sick - they understood how cautious I needed to be.
Nicole: Given gluten-free wasn’t “a thing” ten years ago, friends of mine thought my new diet was an excuse for me to be skinny, and I often had to explain to waiters what gluten was!

6. What was the biggest overall impact/learning to your life? What about your family and friends?

Jackie: My celiac diagnosis seemed like the worst thing at the time. However, I’m grateful for it now. Knowledge is power, and I’m healthier because of it. Going gluten-free lead me to starting Gluten Free Follow Me.
Nicole: Since going gluten-free almost ten years ago, I haven’t had the flu again, and I’ve only had strep throat once! I also NEVER get sick! 
Lexi: I think overall I learned, in so many ways, that food could heal…I truly believe in the power of food and the difference it can have on our bodies (and our minds)! 
Erica: I learned that only I am in control of my health. I have to make the right choices when it comes to dining out, educating servers, etc. I have to be in charge of what goes into my shopping cart. I have to visit the doctor regularly and make sure I'm in control of my celiac and that my celiac is not in control of me.

7. What was it like when you first went out to eat?

Erica: I had to learn exactly what to ask the server or manager before eating. Now, it's so much easier. I have my speech down. I tell them that I'm celiac and that it's serious that I need to eat gluten-free. No wheat, rye, or barley. I ask them to change their gloves and to prepare my food on separate surfaces. But it took me some time to perfect that. 
 Nicole…because a gluten allergy/intolerance isn’t necessarily deadly, it was hard for me to get restaurants to take my allergy seriously.
Lexi: [I] really wanted something that was ordered by a friend or family member! And that bread basket!In the beginning, before you see a major difference in your health, it seems like a pain, but once you feel better, you don’t want to feel that way again and it makes it so much easier.
Jackie: The first few times I went out to eat, I was a bit nervous. I would eat something small before going out and bring snacks just in case if I couldn’t eat too much of the restaurant food. 

8. At what point did you feel confident about your handle on this diet?

Nicole: That’s an interesting question because I don’t know if I’ll ever feel totally ‘confident.’
Jackie: It’s hard to pinpoint the exact time but I would say when I started posting on Instagram in March 2014…. I knew the nuances and truly felt comfortable eating out and grocery-shopping. It was no longer a chore – eating food became fun again!
Lexi: Once I started realizing I could make really good alternatives that satisfied what I wanted, like my pizza crust, bread, pancakes, etc.

9. What’s the one thing you would go back and tell yourself looking back now?

Lexi: To me in college: LISTEN TO YOUR BODY. I ignored all of my crazy gut issues then and really, really regret that.
Nicole: You are going to be okay. And not only are you going to be okay, you are going to thrive in your new way of life. 
Erica: I would tell myself to be patient with my healing. I thought I was going to feel better right away. But some celiacs take years to heal, and I was so impatient with my healing process.
Jackie: When you first find out that you can’t have gluten, it’s incredibly overwhelming. But when you realize how many amazing options there are (especially nowadays), you really don’t have to worry. You WILL be able to eat delicious AND safe food. 

For more information from each of the participants or to read the full interview from each of them, click on the links below. And make sure to keep an eye on our Instagram page towards the end of the month because we will be doing a giveaway!