A Conversation with Jennifer Esposito: Actress and Fellow Celiac Advocate

On TV, Jennifer Esposito has acted in popular TV shows such as Spin City, Law and Order, Rescue Me, Samantha Who and Blue Bloods.

On film, she has worked on great films such as Summer of Sam, Crash and Wes Craven’s Dracula:2000.

But in real life, Jennifer has a new role: celiac advocate.

And as I discussed here, we are so happy to have her on our side.

The two of us have been in contact via Twitter and email for the past few weeks and she and I are on the exact same page with the challenges facing the celiac community.

In the following interview, she shares her thoughts on her career, her diagnosis and her passion about celiac disease.

Enjoy!

GD: I’ll start off with a non-celiac question. Back in my 20’s, I was an actor. Studied with some great teachers; lived in both NYC and Los Angeles; got some spots on soap operas and independent films. But by and large, I was a spectacular failure. I tried telling myself the acting gods just weren’t with me. But I think mostly I was just a crappy actor. What do you attain your success to?

JE: There were two things I loved as a child: eating and entertaining. When I wasn’t making a mess in the kitchen trying to create some delicious goodies, I was that annoying child putting on plays, dancing, even walking and flipping myself off the couch into company that was sitting there. Basically anyone who stood still for more than 2 minutes would have to endure some kind of performance by me.

As I got older acting became my love. When I started working professionally I was told everything from your too ethnic, your not ethic enough, you sound like from your NY, your teeth aren’t straight and was even told my a few agents “I don’t get it” IT meaning ME. The reason for my success as you asked, sheer perseverance. I’m not good with people telling me who and what i am, as well as telling me how and what I can do with my life.

GD: And a follow up question. Pursuing an acting career can be a brutal experience. Given all of your health woes, how the heck did you maintain your energy and your sanity while following your dream?

JE: To say the business is brutal is an absolute understatement. Don’t get me wrong, I did not make it to this point unscathed. The pressure and constant battle to prove myself as an actress in the entertainment business took a major toll on me; leading me to many many years of struggle personally, emotionally, spiritually and yes physical.

Never realizing that contributing to this struggle was emanating from a hidden disease. My undiagnosed Celiac took many shapes and forms regarding my health mentally and physically. Falling asleep on any break I ever had while filming was normal for me. Makeup artists dealing with my yellow skin (due to constant elevated liver enzymes from the disease) leading me to always bring a specially formulated color foundation that matched my skin. Depression and anxiety that shaped my every day.

Also being told I had an attitude from producers at times because I sometimes would get really quiet from exhaustion, stomach issue and anxiety attacks. People would think that after 20+ years in the business, 15 movies, countless tv shows and even awards would somehow make this business easier.

WRONG!

The discrimination from the business that I am dealing with at this present moment due to this disease is so very sad and completely infuriating. Something I wish I could explain more right now but can’t, but be certain that I will in the future.

So hopefully my long winded answer was sufficient but to tie it up. I have absolutely no idea how i have stayed in the business that I’m in so long. I love acting but can’t say I love the business.

GD: You tell a very powerful story on your website (JennifersWay.org) about how, after an examination where you were hoping to get some answers to all of your health issues, the doctor simply said “Jennifer, do you want to kill yourself?” The subtle suggestion by your doctor was that your symptoms were not real…that you were suffering from depression. You tell another story of someone who was on chemotherapy for Crohns disease for TWO YEARS. It turns out, he didn’t even have Crohns. He had celiac disease. I have heard horror story after horror story on my blog of people’s experiences with their doctors. In your opinion, why is this and what can we do about it?

JE: Oh goodness, you really want to know what I think regarding why we don’t get better attention with this disease???? MONEY

Sorry folks that’s what I believe. This disease has NO PILL ANYONE CAN SELL US! This disease is the only disease that can be managed by food alone! That means big financial loss for pharmaceutical companies. Think about the money most of us have spent on these “false diagnosis”. I know for me the number is probably close to $500k, between tests, antibiotics, doctor after doctor and then psychotherapists all lead to nothing.

I too get so many emails from frustrated, sad, scared and broken people searching for answers.

The other main culprit as to why this disease gets puts under the rug in my opinion is the fact that our food quality is a MAJOR problem. I believe the GMOs in food today is what’s making us all so very ill. Celiac is directly related to food. We need quality, less harmful preservatives and no GMOS!

In saying that, are we going to remedy this problem? Probably not. That’s why EDUCATION is KEY! If we as the consumer stop buying the processed crap (sorry) that they are selling us, then maybe we will get a change. Maybe.

GD: Most people feel relief when they get diagnosed with celiac disease. Personally, I was pretty angry/resentful. What was your very first reaction upon learning of your celiac diagnosis? Did you go through any “stages” to get to acceptance?

JE: I personally was overjoyed to hear I had a disease. Reason being because i was told it was in my head and I was crazy for years! I ALWAYS knew that something was wrong. Also at the time of diagnosis I was so severely ill I just wanted some kind of an answer.

I will say until this very day I go through very sad and broken days about this disease. I deal with many other issues due to this disease going undiagnosed for so long and there are days is gets to me. The constant monitoring of EVERYTHING that comes into my surroundings is quite exhausting to say the least.

I do have acceptance of this disease though. It is what it is but as I said earlier I will not let it tell me what and who I am, especially what I can eat. That’s why I started baking and cooking like a madman. The thought of NEVER having bread again was something I just couldn’t digest, excuse the pun. I will not live in constant deprival of things I love. Everything from bagels, to cupcakes, to pancakes is still all within my reach, just healthier now. Being able to make these things not only quenched my appetite but gave me a sense of control over this consuming disease.

For anyone who has this disease I recommend getting in your kitchen today and take your life back!

GD: I assume you spend a lot of your time on the road and away from your gluten-free comfort zone. How do you ensure you are safe to eat when you are on movie/TV sets/events for long stretches of time?

JE: I bring a lunchbox wherever I go. When traveling, I always rent somewhere with a kitchen so I don’t have to rely on eating out. It’s not easy but doable. It’s all about planning. When I work long weeks or days, I cook big meals and freeze them and make a muffin of the week to take and snack all the time.

GD: What do you miss the most from your non-celiac days?

JE: What I miss the most from non celiac days is spontaneity. Casually going through your day and stopping for a bite at a new restaurant is something I truly miss. I also LOVE food and loved going to experience what the chef created rather than getting the salad and the plainest of dishes on the menu.

GD: You land a leading role in what will surely be the biggest film of the year. But the role calls for you to eat gluten (I know…just humor me). How do you handle this situation?

JE: I say No Thanks. I am not and never will be someone who will give anything for a role. Never.

GD: I’m a big believer that “we are what we eat” and that food plays a HUGE part in our overall health. And yet, by and large, we are an incredibly unhealthy society. What can we do to get people to eat healthier without coming across as preachy or controlling?

JE: I think everyone has their own road to go down. All we can do is give people a CHOICE as far as info towards eating well. I too completely agree that we are what we eat; unfortunately people don’t care enough about themselves sometimes to believe they are worth more. It’s also a commitment to really watch what you eat. Everyone is so busy these days they don’t believe they have time to eat right. Not so; you are WORTH taking the time to eat well. Believing that is the first step though.

GD: You are out to dinner with Kim Kardashian, Lady Gaga, Miley Cyrus and Dean McDermott. For the main course, your guests all give the waitress a hard time about how the meal must be 100% gluten-free. But then come dessert time, they each order a piece of gluten-filled cake. What, if anything, do you say to them?

JE: Sorry I would have left before appetizers. 🙂

(Dude note: I LOVE that answer.)

GD: What are your three main goals for Jennifer’s Way and what can we do to help you attain those goals?

JE: Main goals for Jennifers Way? How long do you have? I will say to educate is the number one goal. No one should suffer the way I have at the hands of negligent doctors and bad food quality. I want everyone to know what to look for and how to ask the right questions to the medical provider in their lives.

I also want to educate about what this disease truly means. It’s not a diet, a fad or a get skinny quick routine. Its an autoimmune disease that needs constant attention.

With this education people will have a choice of how and what to eat.

Which leads me to my second huge goal: better FDA regulations on the surplus of gluten free food out there. Most of it is junk and can HURT a celiac. We as Celiacs need nutrients, not more preservatives, starch and sugar. There is a overlooked amount of gluten ALLOWED in gluten free products still. For a celiac, it is 1/8 of a tsp that can get us sick THIS IS NOT OK!

I can go on and on but i will just list a few more real major goals:
1- Need Lists of ALL ingredients in medications, MOST ALL contain gluten.
2- HEALTHY gluten free choices in hospitals.
3- Faster diagnosis time.
4- Financial help from insurance companies for people with this expensive disease.
5- For Jennifers Way products and bakery be worldwide. To give people a SAFE, HEALTHY CHOICE that they know they can trust

How you can help is by supporting me on all social media. @JennifersWayJE on twitter, JennifersWay.org and Jennifers Way Facebook page. If I told you how many producers, networks, investors I’ve approached about a gluten free cooking show or a informative talk based show to helping me get my products out you wouldn’t believe. Their answer is always, “Really how many people are interested in this?” and my favorite response, “but is this entertaining?” LOVELY

Unfortunately EVERYTHING is about money. So for us to be heard we need to come together as a group that demands to be heard. I will gladly put myself and the years in front of the camera to use but need you to back me. WE as a group equals money in the powers that be. Sad but true.

(Dude note: I asked the celiac community if they had any questions for Jennifer. As usual, they came up with some good ones.)

Does she find that as a celebrity, people take her more seriously regarding Celiac issues?

JE: I don’t think of myself that way at all! And no I don’t get treated more seriously with this disease. Probably worse. No one wants to hear health advice from a “celebrity”.

How did she memorize scripts while suffering brain fog?

JE: Brain fog was very difficult and still comes up from time to time. I quit the business when I was diagnosed so I wasn’t memorizing lines then and couldn’t if I tried. I remember about 6 months after my diagnosis, I was getting my hair cut at a new salon quite close to my apt in NYC and I was asked to write down my address for their reference info. I stood there completely blank and scared to death. For the life of me I couldn’t remember where I lived, a very scary day indeed. To this day If I come in contact with gluten, everything goes and my memory is one of those things.

As a celebrity, how will she proceed in making sure the celebrity world realizes this is a disease, not a bandwagon or a craze??

JE: The celebrity Craze about this disease makes me CRAZY. As you can tell, I actually know what I’m talking about when speaking of this disease. I suffer with it every day and will do everything I can to educate the uneducated.

What was it like working for Wes Craven on Dracula 2000?

JE: Wes Cravens Dracula was a lot of fun to work on. Such a fun time and shot in New Orleans!! I ate my face off!!!

Does she have any advice for young children struggling to “fit in” when they have to bring their own food to class parties or for our teen kiddos who would rather be sick than be different?

JE: Children dealing with this disease is one of the reasons I started baking and cooking. Early on when i started to venture into the kitchen and make my gluten free/dairy free/refined sugar/corn and soy free treats, my sister told me of a story of a boy around 8 in my nephew’s class that was given a piece of broccoli when the other children were celebrating a birthday party in class. I made him a basket of treats that next week I was so upset for him. It sucks having this disease as an adult; I can’t imagine being a kid. I would say to those children that it’s not easy but this way of life will help them grow strong and healthy. They may feel different in that moment in the lunch room or at a party, but they should know there is a community of people just like them, including me.

Ooh! I love those “what’s in your fridge” photos. You could ask, “What’s in your pantry/fridge right now.” “What’s for dinner tonight?”

JE: Whats in my frig???? Always have something that I’ve baked. Right now it’s my new gluten, dairy, egg, soy, yeast free bread. It’s freakin AWESOME! Sorry but I get excited about my food. About dinner, it’s always up to what’s new and fresh from the local farmers at my local health food store.

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My sincere thanks to Jennifer for her time, but more importantly for her celiac advocacy.

Please do what you can to support the cause.

Jennifer’s Way Website | On Facebook | On Twitter

In the video below, Jennifer tells her celiac story. It ain’t pretty.