Jennifer Esposito’s Incredible Journey with Celiac Disease

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By:
in Celiac, Features
Published: July 16, 2014

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We’ve seen her acting chops in many roles – from the movie Crash to the TV shows Blue Bloods and the former Spin City. But now we’re getting to know Jennifer Esposito in close-up, as a member of the celiac disease community. After many years of doctor visits and symptoms from stomachaches to frightening panic attacks and hair loss – Esposito finally learned that she has the autoimmune condition.

The revelation led the actress to cast herself in new roles. Esposito has become a gluten-free baker, at the New York City bakery she launched; outspoken advocate, using her celebrity profile to raise celiac’s profile; blogger; and now author, with her book called Jennifer’s Way.

Allergic Living editor Gwen Smith interviewed the candid Jennifer Esposito after her book launched in the summer of 2014.

Gwen Smith: You went through an arduous journey to get to a celiac diagnosis. Our readers will be wondering, how are you these days?

Jennifer Esposito: You know, very early on when I was diagnosed, I saw someone on TV saying that she had celiac disease so she ate gluten-free and felt great. But I wasn’t feeling better. And I think that’s an important takeaway to know: everybody has different stages with this disease and, for me, because it was left un-diagnosed for so long, I still deal with it.

For me, it’s very much an autoimmune disease. Some days are good, some days I feel pain in every muscle and I feel horrible. It is definitely something I have to pay attention to every day.

GS: In your book we find you living your life in the spotlight and yet suffering with undiagnosed celiac disease. What made you want to tell this very personal story?

JE: There are a few reasons. First, because I got a diagnosis so late in life, after I’d been pleading for so long because I knew something was wrong. Then getting the diagnosis and still not getting well. I mean, I’m in New York and I’ve got money to spend, and I thought: ‘Wow, what are other people like me doing?’ The more I began to research and talk to people online, I realized it wasn’t just me [struggling]. Yet the information out there and what I was given by doctors was just ‘eat gluten-free,’ and that was it.

It’s one thing to not be heard for so many years, but then to be heard and be told ‘now do this’ [go gluten-free], and it still doesn’t work. So you ask questions and you’re told: ‘You already have the answer, now go away.’ I thought ‘this is not OK.’ It turned out I had so many other things going on with my body, I still wasn’t obtaining nutrients, and I had hair falling out, eyelashes falling out, neuropathy [weakness in the hands and feet]; just a mess.

I’m a person who can’t tolerate injustice, so this made me upset and in a strange way, almost to my soul. I had to do something. I thought, if I’m dealing with this and have the means to get help, I can’t imagine what others are feeling. So I thought it was important to give people a voice through my experience.

GS: It’s hard to reconcile you being as ill as you were with what we saw on TV. I’m thinking of fresh-faced Jennifer on Spin City – your character was this sassy, vivacious New Yorker. Was it all a TV illusion?

JE: No, no, there were a lot of great times, and I’ve definitely enjoyed my life. But there was always a bag of tricks with me. I had gingerale, Xanax, Pepto Bismal and Imodium with me – always. And my mood was affected; I would get very depressed, I didn’t know why.

Here I was, getting the career I wanted and working with great people, and yet there were the times when I was just really down. [With celiac disease,] my stomach symptoms were a problem, but nothing was worse than the neurological effects. Right before my diagnosis, I was having extreme panic attacks; I couldn’t walk, my legs used to give in. It was horrible.

GS: For the movie Crash, you wanted to be in top shape so you went on the Atkins Diet, and completely cuts out carbs. What happened then?

JE: For that movie, I had to be pretty raw and naked. Of course I was uncomfortable with that but decided: ‘OK to do it, I need to shed some pounds,’ and I did the Atkins Diet. And suddenly I had a lot of energy.

I don’t think it dawned on me, I just figured I was working out much more. But looking back, knowing I have celiac disease, it makes perfect sense. I’d cut out everything from bread to cereal to pasta.

Then the day we finished filming, Don Cheadle [whom she played opposite] admitted he had been dieting as well. Craft services came by with fried chicken, and we went for it. Then, later I was out and had pizza and chocolate cake to celebrate, and I got sick as a dog! I thought, just like people had told me throughout my life, this must be from the stress I’d been under. Actually, my body was under stress, it was constantly fighting for nutrients.

GS: You describe seeing doctor after doctor. You go to visit one more doctor, and write that “I expected nothing, but hoped for everything.” Then you test positive for celiac disease, and what’s fascinating was your response: “All I really heard was: ‘You’re not crazy.’” Can you explain that?

JE: All I had heard was: ‘maybe it’s in your head,’ ‘you’re stressed,’ ‘you have issues.’ And I felt: I do have issues. I never feel well, and I get panic attacks, my stomach hurts. But to have people around, in all walks of life, saying the physical ailments you’re feeling aren’t real; I can’t even tell you what that does to you over time.

esposito2Esposito with husband Louis Dowler

To finally hear someone say: ‘I have an answer and it’s not in your head?’ Incredible!

By that point, I didn’t care if she was going to give me 10 months to live. What I heard was that I was right, instinctually right in what I’d been feeling for three decades. [A gastroenterologist traced her disease back to childhood dental symptoms.]

GS: You refer to continuing health issues, especially nutrient absorption. Can you tell us more? Even others with celiac disease may not be familiar with this.

JE: Like I say, if you start to eat gluten-free and you feel great – awesome. But with the bakery and the blog, I don’t often hear from the people who feel better immediately.

I had a disease I didn’t know I had, and always felt horrible. And then I felt like I wasn’t even doing the disease correctly – I’m gluten-free and I’m supposed to feel better, and I’m not.

I’ve since been told it takes six months to a year, or even longer, for the villi [the finger-like projections in the small intestine] to heal. And you need a completely gluten-free environment, which is difficult; it can sneak in somewhere. And if you haven’t been on the gluten-free diet for years, I can’t imagine that it’s not going to take some time to heal.

GS: Now you have come out on the positive end. You’ve made the leap to being a gluten-free bakery owner. How did that transition happen?

JE: You know, I just don’t understand the word ‘never’. I couldn’t exist knowing I could never have another piece of bread again or have a cookie. I love food too much. I love to cook and bake, and I started playing around, figuring out the healthiest ingredients I could add, and then how I was going to turn it into something I wanted, rather than something I ‘could’ eat. Starting the blog and hearing people’s stories – worse than mine – it kind of put it into high gear.

GS: So now you have your bakery in New York City’s East Village, which opened last year (2013) and is also called Jennifer’s Way. What will people find there?

JE: We have everything from bagels to bread to cookies and cakes. We recently introduced a new pecan-raisin, yeast-free bread, that’s fantastic and crunchy. It’s done with olive oil and arugula and pears and honey, and it’s amazing. We do everything; I absolutely love being there.

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Esposito’s scrumptious-looking jelly donuts

I wanted it to feel safe, that’s the whole premise of it. We hit pretty much every allergy. We don’t use egg, there are no peanuts, we do use some tree nuts, but they’re not in everything. We don’t use soy or dairy or corn. I wanted a place where people could feel that food is fun and not feared.

GS: I also hear that you’ve got a big expansion under way.

JE: We’ve acquired a 17,000 square-foot space and we’re building an entire dedicated facility [with the same free-froms as the bakery]. We want to be able to get in the grocery stores and wherever people need the products. We want to do everything from the bagels to the cookies to a frozen safe meal that you could pop in the oven. We’re working with two partners, people who ‘get it’. I am the CEO of the company, everything passes by me.

GS: For all the issues you’ve had, you really are such an energetic person.

JE: It really comes from that sense of feeling that things have to be right and held in respect. This disease gets a lot of flak and jokes, and I have no tolerance for that. When I see a little girl who comes in the bakery who has to have infusions every month and then to hear people making fun of a gluten-free diet, it breaks my heart. To me it’s just something that I need to do.

See also:
Jennifer Esposito book, Jennifer’s Way
Allergic Living’s review of Jennifer’s Way and other GF resource books