Celiac and the Beast

Erica Dermer Interview

1. Why did you start suspecting you had a gluten allergy?

I started to suspect there was something wrong with me when I got sick one night and didn't get better. 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.I went to several doctors to see what was wrong, and instead of celiac, I was diagnosed with just about everything else.

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

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.My process, however, was all over the place. 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.Finally I met with a doctor that doubted some of my earlier diagnoses and asked me to go on a gluten-full diet for 8 weeks and get scoped again. Finally, along with a genetic test, I was diagnosed with celiac disease, for reals. 

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

Since I went back and forth with the gluten-free diet, when it was finalized that I really needed to go gluten free for health, I took it seriously. Before, I was eating fries made in shared fryers, regular oats, and I would just take bread off of sandwiches and eat them. Now, I was taking it seriously and following a strict gluten-free diet. 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.I was so sad, but it's a process that we all had to go through.

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

It's a huge learning curve. You change your entire life going gluten-free. It's not just about buying new things. I had to clean out my pantry, my kitchen, buy all new cutting boards, etc.I had to learn what type of questions to ask when I ate at a restaurant. I had to learn how to cook from scratch and bake using gluten-free flours. I had to stop my reliance on dining out and learn what it's like to dine most of the time. I had to learn how to help my body recover from years of malnourishment and nutrient deficiency.Going gluten-free is hard, it's quite the learning curve - but I didn't have a choice. You have to learn to adapt to your new life.

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)?

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.I still hear off-hand remarks while waiting in line that gluten free is just a fad. 

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

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?

It's terrifying at first to go out to eat. 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. I also bring my Nima gluten sensor with me when I dine out to make sure my food is as safe as possible. 

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

It takes time. Time to get used to anything on a gluten-free diet. It's all about adaptation But it gets easier - I swear! It took me a few years to feel confident, but I feel like I've got it under control!

9. How has the gluten free world changed since your transition and how do you see it continuing to change in the next 5-10 years?

The gluten-free world has totally changed since I was first eating gluten-free. More and more restaurants are doing gluten-free, safely! More restaurants have corporate policies about food allergies and celiac so I feel much safer now.We now have an FDA regulation in place for the label "gluten free" on products, so they have to be under 20ppm. Food brands are taking gluten-free seriously, and getting certified gluten free. Every year, it gets better for being gluten free.   

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

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.

11. What’s your favorite gluten free recipe? 

My favorite gluten-free recipe is any gluten-free boxed mix that actually tastes good! I just don't think I can make something from scratch that tastes as good as these amazing boxed mixes that are out now!