80 degrees and sunny. I had not noticed either fact that day. At the moment I was shivering, yet covered in sweat as I sat naked under a paper gown getting poked and prodded by yet another doctor. I had just spent the last hour in the doctor’s office going over every detail of my medical history, personal history, family history, current symptoms, well being and state of mind. Now was the moment of truth…the exam!

jennifer esposito's celiac storyShe checked my pulse, took my temperature, ran her hands around my body, listened to my heartbeat, all in a very quick 5 minutes. She wrote some things down on her chart, took a beat, removed her stethoscope and gently put her hand on my slumped back. My body stiffened at her touch, yet melted from exhaustion. Was this it? Did she find it? A lump, a bump, a swollen something that would explain years of unanswered, unexplained illness. Was it cancer? Was I dying? And if so, how long did I have?

I didn’t even care about the facts at the moment. I was just so damn happy to finally have some answers. I actually managed to smile in the face of my pending doom as I looked up at her with hope. She smiled back sadly and said, “Jennifer, do you want to kill yourself?”

I stared at her blankly. I had no words. Tears just rolled off my cheeks. I couldn’t believe what I had just heard. Did she actually just ask that? I told her I was depressed, but that was because I was sick all the time. Wouldn’t that depress anyone? Killing myself though? Was that what was written on my face? My mind raced and my insides screamed.

I actually managed to smile in the face of my pending doom as I looked up at her with hope. She smiled back sadly and said, “Jennifer, do you want to kill yourself?”

Did I not just describe an hour’s worth of what have now become debilitating symptoms? Symptoms that I have carried with me through my life like a weight, which now felt like 100lbs. Sleeping close to 13 hours a night and waking up exhausted, constant stomach problems, raging panic attacks, joint pain, knees buckling, extreme weakness, yellowing of my skin, extreme sinus headaches, numbness, tingling, and hair and nails so weak they would just break off from a simple touch. Not to mention the huge lump that was now protruding from my neck, just under my ear.

In spite of all this though, I had managed to become a self made, hard working, award winning actress. Almost 15 years as a working actress in a god forsaken, takes no prisoners business that would make the strongest man crumble. Worked hard and managed to own my own home by the age of 25. And at this point of my life I was a friend, an aunt, a godmother, a sister and a self respecting 35-year-old women. I had traveled to foreign countries alone. I have had good relationships and bad. Cried, learned from mistakes, got back up. I’ve never fallen in to the evils of “Hollywood” – never had an eating disorder, I worked out to stay healthy, and never took a drug in my life. I learned to meditate and developed a strong spiritual center. I’ve been at my lowest and knew to count my blessings for what was, rather than for what was not.

At that moment though, it was too hard to count blessings when you’re too tired to even see. Did this sound like a person with a weak constitution? Someone who would kill themselves and take away everything I had worked so hard to attain? Are you suggesting my symptoms aren’t real, like so many others before? That somehow this is all due to stress or maybe some kind of imbalance?

Jen and sister

My sister and I – always happy around the table.

I’ve been offered anti depressants, Valium, Ativan, Klonopin, enough to start a small drug ring. I had been tested for MS, Lupus, Lyme Disease, hepatitis, rheumatoid arthritis and a slew of others. All of which turned out to be negative. Not to mention the numerous colonoscopies, barium enemas, MRI’s, CT scans, x-rays, nerve tests and so much blood taken that I could have filled a river’s worth.

I’ve been told I had Epstein Bar, irritable bowl syndrome, chronic fatigue and treated for an fathom parasite that was never actually found. All of which I was given some sort of medication and a suggestion to see a therapist. That all this could be some sort of depression.

How is it when doctors can’t figure out your symptoms it somehow becomes your mind? I was so tired of explaining and begging people to help me. I felt so ignored! I’M NOT CRAZY! PLEASE DON’T SEND ME AWAY WITH A PRESCRIPTION FOR VALIUM AND A NUMBER OF YOUR FAVORITE THERAPIST!! I DON’T NEED ANTIDEPRESSANTS, I NEED HELP!!!!!!!!! Nothing, silence, a small sigh is all that came out of me, that and tears.

There is something that happens to you when you feel unheard for so long. You die a little. I was physically, mentally and spiritually done. I was ready to take the obligatory prescription, along with the diagnosis of crazy and go. I was done fighting for an answer and proving my sanity. Then out of nowhere I heard a small voice say, “I need help. I need your help, please.”

The voice I barely recognized as my own. It was a vulnerability that I didn’t even know existed. I was begging for my life with as much energy as I could muster and I was laying that responsibility at her feet. She put her hand on my shaking hand, looked me in the eyes and said, “I will help you. I will find out what’s wrong.”

There is something that happens to you when you feel unheard for so long. You die a little. I was physically, mentally and spiritually done.

Maybe she actually heard me. It’s amazing how the human spirit works. Even though I had heard this phrase before, I somehow believed her. She took what seemed like 10 vials of blood, I put on my clothes, picked up my 100lb weight and went home and waited.

It was two weeks later when the doctor called and said that I had something called celiac disease. She said it was the highest count she had ever seen. A rush of adrenaline spiked through my oh so tired body. “They found it, I knew it, something was and had been wrong”. The second wave of adrenaline as what the hell is celiac disease? The doctor told me it was a digestive disease that had to do with gluten and that I needed an endoscopy ASAP. She immediately got my gastroenterologist on the phone with us and explained her findings. His comment when he heard what she had to say was “What? Really? I never thought to test her for that.” I was a patient of his for 5 years.

My head was spinning so much at that moment I never got out what I would have liked to say to my gastroenternologist of the past 5 years. I wanted to say something like this, “WHY THE HELL HAVE I NEVER HEARD OF THIS FROM YOU BEFORE”.

jen child

I had to pose for this picture before diving into my birthday cake.

We ended the conversation with a number of a nutritionist, instructions to stop eating gluten, and a must for procedure called an endoscopy. I was astonished, scared, happy, and perplexed all at the same time. I searched for years to find an answer to all my unexplained ailments. I asked questions, good questions to the professionals.

I read everything I could about health and nutrition. I even started eating macrobiotic and vegan at one point. So I was aware of the importance of food and health being related. Why had I never even heard of this, celiac disease??? I immediately went on the internet and what I found kept me glued to the couch for hours. I read that I had an auto immune disease and what was happening to my body when I ate gluten. The entire day and the next I scoured the internet for “how to treat” and “what to do next”.

For what little I did find, it all said the same thing – eat gluten free. What the hell did that mean?!

I couldn’t comprehend in my brain that the left over pasta in my refrigerator at the moment was now done. Forever.

I got in touch with the nutritionist. She spelled it out a bit more and told me to print out a list of what I couldn’t have and stick it to my refrigerator. She also said I needed to cleanse my house from anything gluten or that has touched gluten. She recommended I get checked right away by this “awesome doc” in New York City who specializes in this. But it takes weeks, maybe months to get in. Luckily she knew him and said she would make a call. She recommended I get on some Vitamin D and suggested that I might have some slight detox from it.

Detox…really?

For what little I did find, it all said the same thing – eat gluten free. What the hell did that mean?!

Immediately I ransacked my house. Pots, pans, toasters, the entire contents of my cabinets was now in the trash. My kitchen was empty except for the print outs of what contained gluten. These papers that were suppose to go on my refrigerator, covered not only the fridge but 3 cabinets along side.

All my products- soaps, lotions, shampoos, toothpaste, all seemed to have this gluten stuff in it.

What was left? Was there anything out there that didn’t contain this stuff? And my search started.

I will just say this, the next 4 months of my life were absolute hell. Trying to navigate through this new world was debilitating. Not to mention the “slight detox” the nutritionist said I might have? Horrendous. From tremors so severe my entire body would move. To brain fog, exhaustion, night sweats, extreme panic attacks, light sensitivity, joint pain, headaches and then neuropathy.

All of which lead to a phone call to yet another doctor. None of whom gave me answers. It was when I was taken to the hospital for what seemed like a severe allergy reaction to god knows what and the nurse asking me what was going on and I said I think I’m going through a detox from celiac disease. She said “well did you take your medication?”. I looked at her with my shaking body and quivering voice and said “there is no medication for celiac disease.” She replied “Oh yeah, right. Wait, what is celiac disease again?”

I was in a highly regarded hospital in Miami. WHAT? This is when I knew I was in trouble and I might be on my own here. It didn’t help when the Doc came in and said he would like to keep me over night to watch my blood pressure but couldn’t because he had nothing to feed me. THERE WAS NOTHING TO FEED ME IN A HOSPITAL THAT DID NOT CONTAIN GLUTEN?!?

As I laid there and sweat through my gown and the sheets I realized that if I ever make it through this, I would need to do something.

This site became an idea because if it will help one person feel understood, heard, justified or not alone, then it did what I wanted. You see, when I realized the serious lack of information out there and just the general disregard for this disease and the people that have it was great, I turned to you. I went and spoke to other Celiacs on forums like the one I hope we have here. They understood. I remember the first time I felt the neuropathy come on. I was lying on my couch and all of a sudden I couldn’t feel the entire right side of my scalp, then the right side of my face, then down my arms. Was I having a heart attack?

As I laid there and sweat through my gown and the sheets I realized that if I ever make it through this, I would need to do something.

I was so tired of getting either ridiculous answers from Doctors or no answers at all, that I decided to calm myself down (although I was panicking) and google neuropathy myself. There it was, someone speaking about exactly that. It was another person dealing with celiac and she recounted the exact same symptoms I was having.

When I pressed on the link it opened to a gluten free celiac forum. My world changed. There were SO MANY feeling what I was, and suggesting what they did to feel better. That’s all we want. To feel better. To eat better. To have better options and to be heard.

I hear you and I am here to help!

It is my mission.

Ever Onward,

Jennifer Esposito

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This Post Has 18 Comments

  1. Lz Franchini

    http://yougotpinkdrink.myplexusopportunity.com

    Jennifer. I am a Staten Islander as well. We have some mutual friends. I actually worked on a film with you in Brooklyn and saw you in a restaurant in NJ. Are you on a probiotic for your stomach issues. Pink Slim, probiotic, bio cleanse and X factor has helped me immensely from joint pain. And digestion. They have many testimonials for weight loss to helping disbetes, acid reflux, joint pain, cholesterol, high blood pressure and many other issues. I try and stick with an Alkaline diet. There’s a great raw for restaurant in NYC called Pure Food and Wine. It’s delicious. Hope your doing well and everyone who is suffering. Health is the most important. Please check your PH levels. When I’m in pain my acid levels are so high. When I’m alkaline and feeling great it’s Green!! Good luck and all the best.

  2. Julie

    Jennifer – how long did it take for you to start to feel better once going gluten free? Did it take quite some time? (I’m just over 4 months on the diet and still struggling (yes, confirmed celiac w blood panel and biopsies from endoscopy))

    Also being tested for MS, lupus, scleroderma, rheumatoid arthritis, so on and so forth. I’ve been so scared. I know I’m not getting any cross contamination – my entire home is gluten free. Can I ask you specifically about lupus? Were they just ruling it out or did you have specific symptoms that made them think lupus? Did you have lupus-type skin issues? (My cheeks have this rash that is light, under the skin and I am so sensitive to the sun. Seems like a trigger. Cold and loud noise seem to be triggers for me to – with other symptoms) I just keep praying it’s just celiac’s because…isn’t that enough?

    Out of curiousity – because you have celiac’s does your doctor regularly screen for cancer or just the same way any individual would be checked? I keep forgetting to ask my doctor (brain fog!) but need to jot that down if that is something they do.

    I know each case is unique and I’m not expecting you to answer but you know how difficult the limbo process is. I just wish I could feel good one day. That I could gain a few pounds. That I could be the person I want to be. My entire system is out of whack. Just not functioning the way I would like, the way my children deserve for me to.

    Thank you for your site. Wishing you a beautiful day.

  3. Cathy

    Your story is so similar to mine. I went through test after test, doctor after doctor with only vague answers, nothing firm. I was handed medication left and right and nothing helped. I felt labeled a hypochondriac that all the docs knew ahead of time. Blown off after months of trying to get answers. So I gave up. It wasn’t until I developed anemia and pushed my GP to send me to a hematologist I FINALLY found myself being taken seriously. It was the first time I had heard the word Celiac from a doctor before. As scared as I was, I was relieved to know it wasn’t in my head. Afterwards, I went through months of tests, but at least I was being treated as a serious patient.

    It took 8 years to get here. 4 months gluten free and I feel better. Not 100%, but brain fog is mostly gone and I’m not nodding off at my desk every day. Maybe once a week.

    Thanks for your bravery and sharing your story. It really made me feel better.

  4. Kristine ODonnell

    Jennifer we tweeted this morning, I’m in tears reading your story. Because I’m going through this and feel so so alone! Although diagnosed with Crohn’s , 6 feet of intestines removed, many stays in the hospital, so many ct scans, colonoscopy, endoscopy, viles and viles of blood taken for test after test. High doses of prednisone that now I have new things happening my beautiful skin is gone, constant itching, and that lump behind my ear and ears draining itching, told I have RA and another form of arthritis caused from Crohn’s ??? The lest goes on, but the worst is not 1 oz of energy! I’m now so depressed I’ve not left my home except for drs appointments to walgreens. What’s happened to me? I’ve never heard of your disease but I feel your despair because i feel it! So now after reading this my research begins! I pray for energy to help myself! Thank you for this and your tweet! I cried because someone heard me!

  5. Marie Rubbinaccio

    Hey Jenn, Ive been following you on FB and click to your web page. After reading this I think I read it with my mouth open. Good Lord! Its amazing what a person and their body can go through and Im especially in awe of the Universe and how it brought you to your place of being today. Its amazing the strength we have when we are almost at that point of no return and 2 words brought to back to Life. I do not have celiac but Im gluten sensitive and Im following people like you and others to look to for help in my Diet. I tip my hat off to you for your Life,Courage and The love to help others. Thats Angel Work.
    Im following my purpose as well and thats to be a Health Coach attending IIN school in order to help others to get the health advise they so need when faced with some things you faced. Many,Many Doctors haven’t a clue, but then again I don’t need to tell you. With that said there are some Dr.s that are coming around and join us. There are some Dr.s that have Health Coaches in there offices to let us help people like you and SO many others who are faced with other conditions related to food issues.
    Im a Native NYer and when Im visiting I will stop by to shake your hand and say Thank You for your Angel Work. May god bless you in your journey of Health,Happiness and for finding YOUR rainbow.
    Namaste! Marie

  6. Jenise

    My goodness I cant thank you enugh. You have no idea ( actually you do) how it feels to have professionals not know what is wron with your body and be made to feel like youre crazy. I have been through o many tests, so many Dr.s its sad. I went to the ER one morning and after a series of test and xrays the Dr comes into my room and asks me i I have anything going on in my life right now. He thought it was anxiety. Even made ME think it was anxiety and wrote me scripts for zanex!!! I took them for 2 days and stopped. I knew that just wasnt it.It got to the point where I had to change primary care Dr.s becaue mine was so tired of hearing from me she began to get snippy and rude. She said it was my gallbladder and sent me to a GI specialist. She said lots of people my age eat too much fried food and dont realize it and that its an easy procedure…. I am working per diem at a hopital right now as we speak. I just had a heart to heart with a very nice woman who explained her symptoms to me and my jaw dropped, because it was the same carbon copy thing I was going through. She came through the ER and said ” I KNOW OMETHING IS WRONG INSIDE OF MY BODY ANDIM NOT LEAVING UNTIL WE FIND IT.” I understood her frustration….. I just printed your article and eft it by her bed. Hopefully it helps her as much as you helped me. Ive been tested too much, paid wa too much in copays, just to be looked at as another depression/anxiety case. What about the people who are taking meds right now for depression….. do they need it???? Are they actually allergic to gluten? Monday I will ask for a test, but Im 99% sure I know the reults. God bless you for being beautiful inside and out. I may be even worse off than you guys because I am pescetarian…so thats THAT much les food I can eat : ) Let my new Journey begin.

    1. Jenise

      P.S. I am in CT and I travel to NY and NYC all the time. I am also a plus size model and pageant winner so I travel all around to compete, judge, shoots etc. I think your Bakery is a wonderful and kind hearted idea. I WILL be stopping by ; ) Thank you again.

  7. Daniel A.Prohonic

    Somehow,i contracred Celiacs disease soon after i had emergency surgery to remove a 15 centimeter tumor in my intestines,and when i started chemotherapy for Non-Hodgkinson Lymphoma.I visited the oncologist at University Hospitals in Cleveland and he informed me of my two new afflictions.I’m in remission now,having a blood draw,ct scan and physical every six months to check on my folic acid,vitamin d,vitamin c,calcium,hemoglobin and iron levels to maintain a proper balance.While undergoing these check-ups,i was informed by my doctor,that i also had Lynch syndrome II,which is a hereditary cancer gene,it runs in the family,while some in the family have Lynch Syndrome I,i have II,the difference being the types of cancers in each Syndrome.Although i treat myself with a mostly gluten free diet,i have added an increase in bananas,leafy green vegetables and at least 1 cup of yogurt daily,sometimes two.This regimen has helped me with my digestion and evacuation regimen,to minimize any embarrassment,i still have to be cognizant of my condition and i have scheduled my eating habits to be able to control my bathroom visits.I take 1500 mgs of glucosamin and 1200 mgs of chondroitin for osteoporosis and folic acid 80 micrograms,500 mgs of vitamin c,and calcium citrate daily and 50,000MGS.,of Vitamin D-3 4 times a week plus some other supplements for other reasons and it basically controls my problems,i learned what my body did,what it needed and i try to stick with this to avoid problems.I eat Rice Chexs without Gluten with milk and banana daily to help me start my day and avoid problems,so far this has worked,not only am i maintaining my weight,i have added a few pounds to keep me an edge.

  8. Linda L. Smith

    I have never been advised to use gluten free hair products, etc. My blood levels have not been as they should be for a few years. I have struggled to discover what I could possibly do to make a difference. Do you believe that using gluten free hair products would help lower the blood levels?

  9. Daniel A.Prohonic

    I don’t think ,using gluten free hair products would have any effect whatsoever,however,that is just my opinion and i’m a retired police officer,not a doctor of any kind
    This might help,i have just completed on 3/31/2014, a 6 month check-up where they drew several vials of blood for testing,then a week later,based on those blood draws,they conduct a Ct scan with contrast,looking for any inter-actions,a week later,i have a slight physical with my doctor to discuss the levels in by body.He looks for Iron,Vitamin D,Vitamin C,Calcium,Folic Acid and Hemoglobin ,some of these because i have osteopina,similar osteoarthritis.
    My body has a problem in that it does not retain,has a serious problem retaining Vitamin D ,My mother came from northern Italy and people in the area had a problem retaining Vitamin D,therefore my prescription calls for me taking 50,000 units of Vitamin D four times a week,it is a little capsule or gelcap but i ‘m not advising you to take it without seeing a doctor and seeing what your levels are before you do anything,that would be my only advise.Have your doctor draw blood to see what your levels are to bring them up to what you need.Vitamin D is coming to the forefront in so many maladies as a needed medicine.
    I hope this has been helpful

  10. DCTdesigns

    Jennifer,

    I am not a suffer of Celiac, though that was suspected. I was diagnosed with SIBO (and then kidney cancer-it was a fun 3 years). SIBO is another misunderstood digestive ailment that requires one be grain-free, sugar-free and on and on and on. My co-workers daughter has Celiac and she and I are constantly sharing recipes and commiserating with one another.

    Like you, It took my doctors years to figure out what was wrong. Then once discovered, overnight, I was expected to be an expert in nutrition. I relate to your journey intimately. I only wish I lived in NY and could come by your bakery.

    Dana C Thomas

  11. Patricia

    Hi Jennifer,

    Months back I saw the interview you did with Dr. Drew. To this day I still find I have a negative reaction to the way he spoke to you as you tried to explain your health situation.
    (Seriously wish he had the professional courtesy to study up on the topic he was going to discuss with his guest/you that day.)

    I am writing today to provide the following article. It is related to Autoimmune Illness in general, but mentions Leaky Gut Syndrome.
    http://robbwolf.com/2012/05/18/paleo-autoimmune-illness/
    Specifically this information at the end if the article:
    “These are exciting times for those who struggle with AI, as current research attempts to explain what thousands of people have found to be anecdotally true. As Chris Kresser, L.Ac discussed in a recent podcast http://bit.ly/JhUrFg the issue of intestinal permeability or ‘leaky gut’ has been made fun of for years as pseudoscience. Not to worry, the research surrounding this issue is about to explode due to the fact that the first drug to treat intestinal permeability is being developed. Once “Big Pharma” gets involved, and there is suddenly money to be made from treating this issue, the research to justify it won’t be far behind!”

    I have two doctors in my family that I have tried to educate about Leaky Gut Syndrome, now recognized by the AMA as Increased Intestinal Permeability. These family members feel that my vigilance over eliminating gluten and grains as well as other cross reactive foods is a mental disease characterized by food phobia. Lovely, huh.

    Anyway, I don’t personally care that a medicine is being created, as I prefer food and lifestyle changes over a pill for the health and wellness of my body, though to each his own, What I do care about is the recognition of the illness by the AMA (though some high profile doctors already acknowledge it’s real.) To look at us, we look fine. It’s an invisible disease. But our insides tell another story.

    Keep fighting the good fight.
    Best of health to you and your readers.

    Patricia in NYC

  12. martina

    Ciao Jennifer,
    Here in Italy where I live, there are cases of celiac’s disease. Why don’t you open up a bakery here? If you did, I’d spread the word through my English classes (since I teach). We have the California Bakery here which is doing really well but I’m sure yours would do well too since there’s nothing like it here!

    Sentiamoci!

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