The Celiac Project Podcast – Ep 03: 2 Guys Talking Gluten Free

We have our first guest, Sam (Mike’s nephew) and we learn some fascinating facts about him. Sam was diagnosed with celiac disease almost 3 years ago, despite being symptom free. In addition, Sam is a life-long vegetarian and a college freshman. He talks about the challenges of eating gluten free safely at college and has great tips for those who are going to be starting college soon.
Check out this episode!

The Celiac Project

The most meaningful quote in my life came from Steve Jobs when he addressed the graduating class at Stanford University in 2005. He said, “You can’t connect the dots looking forward; you can only connect them looking backward. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.”

Jobs’ quote resonated so much that I placed a portion of it at the beginning of my documentary film The Celiac Project. The meaning of the quote to me is that your life is going to throw you some unexpected curve balls. Only in hindsight can you understand why it was you went through them.  You need to get to a point that you trust that there will be a meaning and a purpose to these events. It makes the words all the more inspiring that they came from an individual who never graduated college, was seen as one of the most visionary people in the history of the world, got fired at one point from the company that he founded, and turned it around to be considered one of the great geniuses of our time.  Jobs was taken from the earth far too early.

My life is not incredibly similar to that of Steve Jobs, but I have experienced a fair share of turbulence. Much of the disharmony in my life came about because of an undiagnosed health condition that I believe punctuated my entire life. At 40 I had the great luck to find a doctor who understood celiac disease and the storm that was my entire life began to subside, leading me to a long-awaited clarity I’d never known.

Life is never a straight line however, and I still find myself dealing with the aftermath and the damage that was created by feeding myself “poison” all of my life. The good news is that I am now able to start connecting those dots and getting my life back together. My hope with this blog, the documentary and podcast is that my story as well as others who have shared their stories with me will help you, whether you have celiac disease or not.

Thank you for reading!

The Call

I was standing in the Merchandise Mart in downtown Chicago looking to source new product for the toy business that my wife and I owned. She was off picking up some lunch for us, the usual sort of fast food fare, when my iPhone buzzed, alerting me that I had a new message.

“Hello Mr. Frolichstein, this is Mary the nurse practitioner at Dr. (so and so’s) office… please call me back, we need to discuss your test results….”

This is never the message that one wants to receive. My test results? Wait, what did they test me for anyway? My memory cycled through possible ailments, but stopped on the first, and most obvious choice:  I have cancer. I probably only have a couple months to live. It’s time to get my affairs in order. On the bright side I guess we all have to “get our affairs in order” at some point.

I struggled with the decision to call my wife on her food pilgrimage and tell her that I loved her while I still had the chance, or to call Mary back for all the grizzly details. I hoped that it would at least be a “heroic” type of cancer (even though that would be a bit of an oxymoron).  I guess I am just hoping that it will take me quickly and with out a lot of suffering. Now it all starts to make sense. The years of unexplained sickness, day after day of migraines and head fog. I guess it wasn’t such a surprise to me that this would be my demise.

The receptionist answered the phone and told me to hold for Mary. The sixty seconds or so she kept me waiting felt like an eternity. My life literally began to flash before my eyes. There were so many things I needed to accomplish. I really hate the term “bucket list” (did anyone talk about their “bucket list” before Morgan Freeman and Jack Nicholson made a movie about it?), but here I was making my own. All I could come up with was that I must play in this year’s World Series of Poker and bungee jump. I should add that I really have never had any great urge to jump off a bridge with a giant rubber band wrapped around my ankle (nor can I understand why anyone would want to), but it seems like something that should be on a bucket list, and besides I am going to die anyway!

When Mary finally got on the phone she seemed a little more chipper than her message–how dare she! Is that the way you talk to someone who has days, maybe hours to live?
“Hello Michael you are probably calling about your test results?” I want her to skip the formalities and just get to it. “Have you ever heard of Celiac Disease?” I know that I have but in my stress it escapes me as to exactly what it is. I do realize that it is fatal and that my worst fears have been realized. I say, “yeah…I think so.” The good news is that you don’t have to go on any medication…” I think to myself, wow nothing to ease the pain as I slip into the other world… “You just have to stop eating gluten.” ” Excuse me?”  As Mary would go on to explain, it is far from fatal and that I should heal and be able to live a healthy life after I make some drastic dietary changes, including never eating even a crumb of gluten forever.

At the moment I’m taking it all in, my wife darts around the corner with a big grin on her face, happily holding our take-out and says, “Honey, I got you your favorite sub!!”  Little did she know this would be my “last supper…” with gluten.

Response to Roger Cohen, NYC Times This Column is Gluten Free

Click here to read the article referenced below.

I was deeply troubled by Mr. Cohen’s article entitled “This Article is Gluten Free,” labeling all who say they are gluten free as one in the same. His “black and white” approach targeting a certain food issue is very problematic and dangerous to those who suffer from a serious auto-immune condition.  Mr. Cohen uses only his own anecdotal experience to cast a negative light onto all who eat gluten free.

As a filmmaker with celiac disease myself, I have had the opportunity to meet many people in the gluten free community, most of whom have suffered for years trying to get to the bottom of their health issues. Many of these people literally had one foot in the grave before they were found to have an issue with gluten (most of these people have celiac disease, but others do not).

I really don’t understand why Mr. Cohen is so inconvenienced by others’ eating choices (regardless of why they make these choices). I can assure him that there hasn’t been one day of my life (post celiac diagnosis), as he suggests, that I have “felt special” by having a special dietary requirement nor have I taken any joy in calling over a waiter or asking to speak to a chef.  Quite the contrary–I miss the days where I could meet up at the corner bar to grab a beer and a burger with friends and just be part of the crowd.

Being gluten free is in no way a “political statement” to me, however I am passionate about helping educate the public about the realities of living gluten free.  I would suggest to Mr. Cohen that being so troubled by what other people put in there bodies is much more “narcissistic” than someone who is simply trying to avoid something that is harmful to them.