Celiac Spotlight- Michael Frolichstein
Michael Frolichstein was diagnosed with Celiac Disease 10 years ago. Since then he created the Celiac Project Documentary to raise awareness about Celiac Disease. He also created the Celiac Project Podcast, along with his co-host Cam Weiner. Each week they talk about all things Gluten Free and feature guests from the Gluten Free Community. Mike is a Celiac Advocate, Husband, Friend and Father of two. He lives in the greater Chicago area. For more information about the Celiac Project Documentary and Podcast, tune in here.
When were you diagnosed with Celiac Disease and how long have you been Gluten Free?
I was diagnosed with CD about 10 years ago. When I got the call from the nurse I was eating a Quizno’s sub. It was the last gluten that I ingested on purpose.
What has been the best part of being Gluten Free? What has been most challenging?
I think that the best part of being gluten free is that I have to consider everything that I eat. While reading labels at the grocery store can be tedious and time consuming, it is eye opening to see some of the crazy stuff that ends up in food, gluten free or not. Now when considering a snack I try to go with the one with the least amount of bad stuff in it (that’s gluten free of course). The most challenging part, without a doubt, is being social in groups. Parties and other social gatherings are still stressful. Communicating to well intentioned hosts that the gluten free cake that they prepared is probably not safe for someone with celiac to consume still causes me a fair amount of stress. I am always appreciative for the effort but also try to use those times to help educate people in a positive way.
My most challenging moments have surrounded large events like weddings. This can be sticky and I don’t want to step on any toes, especially before a couples’ big day, but if my family wants to have any hope at eating, we have to be put in contact with the caterer that has been hired, and I feel so uncomfortable that I almost just want to eat beforehand and say nothing at all.
Why did you decide to make the Celiac Project documentary? How long did it take you to create?
I knew from almost the moment that I was diagnosed that I wanted to do my part to raise awareness about celiac disease. I got diagnosed at 40 having been sick since my early teens. The fact that almost 30 years later it took a simple blood test for me to get onto the path of recovery seems almost criminal to me. I wanted to do my part to show people what celiac was all about, to create something that those of us who have celiac can show to friends and family to help explain what the celiac experience is like and to show others that testing is simple and readily available.
Independent films often take a while to complete. The Celiac Project Documentary took approximately 2 years to get the bulk of the film made. I also worked on pre-production and some initial interviews a full year before that, so about 3 years total.
When did you decide to create the Celiac Project Podcast?
Once the film was completed, I knew that I wanted to do something to continue that conversation that I started with the documentary. I also wanted a way to expand on topics that we could either only briefly touch on in the documentary or not at all. I considered short videos, but podcasting seemed to be the perfect medium for this. I just needed to find the right co-host. This was the summer of 2015.
How did you come to meet your co-host, Cam?
Cam actually came to a screening of the documentary in my hometown (he lives in a neighboring suburb). Afterwards, he introduced himself and we immediately hit it off and knew that we could talk forever about celiac and the gluten free world. We decided to start the podcast and see where it went from there.
What has been your favorite part about working on the documentary and podcast?
There are so many things that I have loved about making the film and the podcast. If I have to say one thing, it would definitely be all of the amazing people that I have met in this community! There is a bond that I feel that most people with celiac and gluten intolerance share. I never would have guessed that I would literally meet hundreds of amazing people and, in many cases, have the opportunity to help share their stories. I’m always inspired by our community and am truly honored to be in such amazing company.
Your daughter also has Celiac. What are some challenges you have had to face when dealing with the school system?
There are many challenges that my wife and I have faced when dealing with the public school system. We do have a 504 Plan for my daughter, but things will always slip through the cracks at times. We try our best to stay on top of the many “surprise” pizza parties and the like that pop up with little or no notice. Let’s just say, as this school year is coming to a close, we could basically open a gluten free pizzeria with all the pizzas that my wife is making at a moment’s notice. One thing that we are very lucky about is that my daughter Jessica doesn’t like most birthday sweets. So she doesn’t fall apart when there is a school birthday celebration that pops up—she’s happier eating an apple anyway.
Any tips you would recommend for people whose children might also have Celiac Disease?
I would say, especially when they are young, the more you can be involved with your child’s school life the better. My wife was a room parent when Jessica was very young and was there in person to avoid potential hazards that would pop up. In fact, at a 2nd grade holiday party the kids were instructed to put there hands in some overcooked pasta to simulate the feeling of “brains.” My wife was happy that she was there so that Jessica avoided taking part. In addition, a 504 plan also provides a good safety net and allows a meeting with you and the appropriate school staff to set some guidelines to work from, which keeps teachers and staff accountable.
What is one thing you wished people knew about Celiacs and Celiac Disease?
There are many things I wish that people knew, but if I have to pick one, I would love the general public to understand that “gluten free” isn’t the same as “celiac safe.” With the trend of gluten free eating becoming so big it helps us celiacs to have more choices, however, more choices doesn’t mean all food marked “gluten free” is safe. This is particularly true in restaurants. I think things are moving in the right direction, but I am hopeful for a time when we can go to restaurants that claim they can serve a safe gluten free meal and that one hundred percent of the time that would be the case. As I say, I think there has been progress in the past few years with awareness, and although it’s going to take quite a bit longer for the food and food service industry to catch up, I know that the celiac community’s diligence to raise awareness will help that industry make great strides.