Jennifer Esposito: Society doesn't get me

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Jennifer Esposito raising awareness for celiac disease

Actress' condition went undiagnosed for years

Jennifer Esposito shares her harrowing story of living with celiac disease in "Jennifer's Way." The "Blue Bloods" actress went undiagnosed for many years, living in chronic pain and fear till it was finally confirmed that she suffers from celiac disease. The 41-year-old actress spoke to FOX411 about living with the illness.

FOX411: How many years did you think you had this?
Espostio: It went off and on since I was a child but when it got really bad was the last two years before I was diagnosed. This disease is really tricky and if it’s not caught early it really does damage to the body.

FOX411: Did you think you were dying?
Esposito: I didn’t know what was wrong me. At the time of my diagnosis my legs were giving out. I couldn’t stay awake, my skin was peeling off, my hair was falling out. I had a growth growing out of my side of my neck. I really thought it was going to be a kind of death sentence.

FOX411: And no one tested you for celiac beforehand?
Esposito: No one, I was with a gastroentologist who was one of the best in Manhattan and he didn’t  test me for it. I was with him three or four years.

FOX411: When you first got diagnosed were you like, ‘What is this?’
Esposito: Yes, I was very up with what was going on with my health. I was reading everything about health and I had never come across this world so when I was told I had celiac disease I had no idea what they were talking about. It was definitely frightening at first.

FOX411: Were you depressed when you learned what you couldn’t eat?
Esposito: In the beginning I just wanted to be ok. I didn’t care but after a while when it dawned on my everything I couldn’t have, that’s why I opened the bakery because I was baking and cooking for myself. It was the only way I could exist.

FOX411: You say you’ve lost friends because of your condition.
Esposito: Yeah it’s very difficult for people to understand. It’s definitely something that if you don’t have it, you don’t feel or see what it’s like to deal with celiac. I was not around. I was canceling and would shy away from dinners and events because I was still really dealing with the disease. It damaged my nervous system too so I was dealing with panic attacks on top of everything. That was another reason to kind of shy away.

FOX411: What are the lasting effects?
Esposito: It’s definitely damaged my nervous system. It does get better over time but for me I find that if I get contaminated with a speck of gluten I feel it immediately. I have shaky and nervous issues rather than stomach issues.

FOX411: Is it hard for people in Hollywood to get it?
Esposito: Society doesn’t get it. It’s not something that people really understand because they think of gluten free eating as a fad. There have been many, many jokes made about it and they don’t realize that they’re hurting people when they make these jokes. Yes, it’s a fad but there is a serious disease attached to eating gluten free and when they make such frivolous jokes they’re hurting people who actually need this food to be clean to live.

FOX411: You’re engaged now. You write that when you first start dating it was hard.
Esposito: Yeah  it’s hard. It’s tricky for the people close to you. Their life is changed as well. There’s no spur of the moment, ‘Let’s drive up the coast and stop along the way to get something to eat.’ It doesn’t happen. It’s hard. You definitely need someone who is sympathetic.

FOX411: Well now you know he really loves you.
Esposito: You know what? You’re right. It’s definitely a testament to who is he, his word. He always said he would stand by me and that was it. There definitely have been times when I’ve thought, ‘This is too much for him.’ We have to figure out how we’re going to go on a vacation, not where but how. It definitely limits his experiences as well.

FOX411: Do you want children?
Esposito: I don’t really know if I’m able to, to be quite honest because the celiac disease has taken such a toll on my system. We both are aware that it’s a possibility and we’re both ok with it either way so we’ll have to wait to see what happens.

FOX411: Tell me about your bakery.
Esposito: The bakery is just a little 400 square foot pile of love. I just adore it. Every time I go into bake I’m just so happy. I started it because I wanted people who have what I have, to have a place where they can enjoy their food without being frightened. All of our stuff is gluten-free, soy free, dairy-free, egg-free, refined sugar free and peanut free. We really try to cover all of the allergies out there. I’m proving that you can have an amazing slice of bread or a great cupcake.