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!
She 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.
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?
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.”
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”.
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.
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?
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.