“Honestly, I’m shocked. Your numbers are off the charts. I’ve never seen this before. I don’t really know how you’ve been walking around like this.” The doctor on the other end of the line had just delivered the news: I had celiac disease. I had never heard that word before in my life. After all the doctors I’d gone to, all the books I’d read in hopes of finding an explanation for my health issues, that word had never popped onto my radar. But I didn’t care. She had an answer! She had a diagnosis! All I really heard was: You’re not crazy.
“I knew it! I knew it!” I shouted into the phone, relief washing over me like a wave. I felt vindicated. After years of wondering and feeling like something just wasn’t right, maybe it would all finally make sense. At that point, she could have pronounced that I had Big-foot Syndrome, and I would have been, like, “Yes! I’m psyched! Big-foot Syndrome!” I didn’t even care if it was fatal, I didn’t care what it meant, or what I would have to do. All I knew was that I finally had a name for the thing that had plagued me since I was a child.
“But Jennifer, I have to ask you,” the doctor said, “Didn’t you say you’ve been seeing a gastroenterologist for a few years?”
“And he never tested you for this?”
“I don’t think so.” I tried to think back, but no—no one had ever mentioned it.
“Well,” she said, switching into matter-of-fact mode, “Before we get into what you need to do, we need to confirm the diagnosis with an endoscopy. This will also show us how much damage the disease has done to you.”
“Damage?”
“Yes. I’d like to get your gastroenterologist on the phone,” she said.
Within a couple of minutes, the three of us were on a conference call, and after introducing herself, in as polite a manner as she could manage, the doctor asked my gastroenterologist the million dollar question:
“With all due respect, why on earth didn’t you ever test her for celiac disease?”
“Oh…” The gastroenterologist was silent for a moment. “You know, I never actually thought of that.”
“Okay,” she said, in what sounded like disbelief. “Well, in any case, she needs an endoscopy immediately.”
The gastroenterologist asked to speak to me privately. After we all hung up the phone, he called me back, and these were his exact words:
“Jennifer, I don’t want you to jump to any conclusions. Don’t listen to that doctor just yet. You don’t want to have celiac disease. It’s a real pain in the neck. You have to restrict your eating. So let’s not assume anything right now. Let me do the endoscopy. When are you coming back to New York?”
I didn’t even take a beat to consider what he said. I didn’t want to have celiac disease? In my mind, there was no more debate. I was totally on board with the doctor who diagnosed me, and I didn’t even consider for a second that she might be wrong. It was like he was speaking to a brick wall. I answered politely: “Uh huh, I see.” But the second I got off the phone, I was at the computer, beginning to research celiac disease.
ONCE I HUNG up the phone, my head was still spinning; I was baffled, scared, and excited, too. I had a crumb of insight—my very first crumb!—and I was going to devour it. My assistant, Jackie, helped me research, and we were at it for hours. This was back before there was so much information online about celiac disease (then and now, much of that online information is incorrect), so we didn’t find a ton of information, but what we did find was sometimes contradictory. There was one constant, however: The only remedy for celiac disease is a drastic change in diet.
Gluten was out, whatever that was. I also read that I could have no pasta, bread, cookies, cake—pretty much everything I ate on a regular basis. We also discovered that celiac disease was either an autoimmune disease or a digestive disease or an allergy, depending on what web site we found. Some said it was extremely severe and could cause cancer. Others said it was mild and all you had to do was quit eating gluten. I was confused but fascinated by the notion that the treatment for this disease was something I could do entirely on my own. How had I never heard of this before?
My next quest was to find out what the hell gluten was.
I’d recently heard about gluten. My sister had many of the same health problems I did, although her primary issue was anemia. A few weeks earlier, she had been diagnosed with what she called a “gluten allergy,” which she said meant that she was allergic to wheat. I didn’t really understand the difference or what it meant, and I certainly hadn’t guessed it would ever have anything to do with me.
I researched further and started to read and read and read. We found a site that listed everything gluten was in. It was a huge list! This wasn’t just about pasta and bread. This was about pretzels and doughnuts and bagels and Saltine crackers—everything in my bag of tricks to help my stomach was actually harming me! The list also included such far-fetched items as soy sauce and beer and shampoo and ibuprofen, and much, much more! I wasn’t sure what all these things had to do with each other, but my assistant and I printed out the whole list so we could post it in the kitchen of my Los Angeles apartment—the list covered my entire refrigerator, up one side and down the other, and then it covered all ten cabinets!
In shock at this point, I was relieved to have more information, and what I read only confirmed to me that I definitely had this thing called celiac disease. The doctor gave me the name, and I was going with it. No matter what else would be required of me, I would do it, and I would go forward with my life as a celiac. For now, until I knew more, I at least knew I had to stop eating gluten, and putting it on my skin, and being in any kind of contact with it. I could at least start there. If that would make me start feeling better, I was ready to go all the way.
By the next day, Jackie and I had filled up ten garbage bags with almost every food item in my cabinets and every beauty product, every shampoo bottle—everything that, according to the list, likely contained gluten. If there was any doubt, I threw it out. I just wanted this new enemy, gluten, out of my home and out of my life.
Next order of business: filling up my kitchen with safe foods. Jackie and I went to Whole Foods and wandered around reading ingredient labels. Over the next four hours, we began to see just how complicated this was going to be. Gluten was hiding everywhere, and there were very few products that clearly stated they were gluten-free. Even Whole Foods began to feel dangerous to me. After four hours, I had very little food in my cart, and only those things I was sure were safe for me to eat.
Meanwhile, whether or not the doctors had agreed on a diagnosis, they both agreed on the necessity of an endoscopy. I decided not to continue to see, or even speak to, the gastroenterologist who had so lightly dismissed my diagnosis, and who had never even thought to test me for this disease. I wanted fresh, clear eyes for this endoscopy, not eyes without an open mind. And I certainly didn’t want someone who had any reason, ego or otherwise, to prove I didn’t have celiac disease.
I began the hunt for a doctor who might be more experienced, and I heard of one who knew about celiac disease. I was hopeful that I could see him immediately.
I will refer to him as Super Doc, because that’s who he was to me in that moment. I was dying to see him.
I got in touch with Super Doc’s secretary, and tried to make an appointment to see him. I was shocked to hear that he had a five-month waiting list. I didn’t realize this thing called celiac disease was so popular. Once they realized who I was, however, there was an opening and I managed to get an earlier appointment. I would see him in two weeks.
Meanwhile, I spoke with a nutritionist referred to me by a friend of a friend. She was currently writing a book on the subject. She was very busy, but told me that I needed to get off all gluten, that I would definitely need the endoscopy, and that I should probably get on some vitamin D. She was also the only one who ever mentioned to me, “Oh, and you might go through a slight detox.” Then she hung up the phone. What? A slight what? It was such a small bit of tantalizing information, hinting at so much in store for me, but telling me so little. I was so grateful, but even more confused than before.
Nevertheless, I did everything she said, but the more I thought about my new lifestyle, the more questions I had. After the fourth time I called her to ask her something, I knew she was done with me and my allotted time for asking questions had expired. Fair enough. Next, it was time to tell my family. I wasn’t sure what to tell them, exactly, because I didn’t know how to explain what this thing called celiac disease really was. I told them I was coming back to New York for tests for a disease I had. I felt optimistic because the last time I’d seen my sister after she quit eating gluten, she’d looked better than I’d seen her in years. If she was looking and feeling so much better after quitting gluten, then maybe I would, too. I’d been off gluten for three days. I eagerly anticipated feeling great. I waited. Surely, “feeling great” would be happening any moment now. Just the way I’d heard, from so many books and shows and websites about celiac disease. Just as everybody else had been telling me.
INSTEAD OF FEELING better, I began to feel worse. A lot worse. I often woke up drenched in a cold sweat. I went through episodes of trembling that I couldn’t control, where every inch of my body shook uncontrollably for hours at a time. I felt truly, severely ill. The television show I’d been on had just been cancelled, and I couldn’t wait to get back to New York to recover and relax. I thought I might take some time off, and get centered and work on a screenplay I’d started writing just a few months earlier. I had no idea of the road ahead of me, but this was what I was envisioning the day I called my manager, who was also a friend, to tell her I had celiac disease.
As a friend, she was concerned because she knew I’d been sick. She cared and wanted to know the details. But as a manager, it was business as usual. She told me I’d been offered a recurring role on a popular TV show filming in Miami.
“A job? No, I’m sick. I can’t do this right now,” I said.
“Jennifer, you want this job. It’s perfect for you. It’s in Miami, so it’s close to New York. It’s only for a week now, then only every couple of episodes. It’s not a big commitment, and we can still look for films for you.”
As I tried to listen to her, I felt numb. She wasn’t hearing me, and I wasn’t well. My mind seemed to be moving through mud or syrup, and my body felt strange and weak. But I was used to struggling through it, so I tried to listen to her. “Really, I don’t know if I can do anything right now,” I told her. “I need to figure out what I’m dealing with here. But let me think about it a second.” She said something about how I couldn’t turn this down, how it was just the kind of job I wanted, how I should save up that money. I tried to gather my thoughts. I couldn’t seem to get my mind to move. “I don’t know. Let me just think about it.”
Of course, they needed to know by the end of the day. I was exhausted and I felt like a panic attack was coming on every other minute, but I’ve never been one to give up a job because of my health. Even with all my health issues, I’d rarely missed a day of work. My manager knew that. She knew that I push through things, so she just assumed it would be the same with this new job. I weighed the pros and cons. I knew I needed a break, but most of all, I finally had some recognition that I actually had a serious health problem, and I wanted to honor that for five seconds before assuming I was “cured” and jumping right back into work.
Then again, as an actor, you always wonder if any job is your last job, if you’ll ever work again. Even when you are working, half goes to the government, half goes to the agent, half goes to the publicist, half goes to the manager…everybody gets their cut, and you get what’s left. Could I afford to say no? Finally, I called my manager and my agent back and told them no. I couldn’t do it. I had to deal with the fact that I was sick, and get well again. But they wouldn’t take no for an answer. We argued about it. My manager said I should fight what I felt and not give up a good job. I shouldn’t let my health rule me. The job was close to home, and I’d be done in a week. I should suck it up and do it.
Finally, I gave in. I would try. I said yes, but that if I did it, I would need some accommodations. My assistant and I started working on a list to send to my manager. I probably seemed like a prima donna but that wasn’t it at all—I now had rules I had to live by. I wasn’t trying to be difficult, but I knew what it would take for me to do this. I asked to bring my assistant, and I needed a hotel room with a kitchen because I had to be able to make my own food. I figured if they couldn’t give me what I needed, it would be a sign that I shouldn’t do the job, but in a few hours, it was all negotiated. I was to leave in two days.
By the end of the night, I was feeling so sick that I went to sleep and woke up in cold, shivering sweat and my head was killing me. I called my agent and my manager. “Guys, I can’t do this. You need to cancel,” I told them, barely able to hold the phone against my ear.
“You can’t cancel,” they said. “You have to do it. You absolutely have to do it. It doesn’t look good to cancel now that they’ve agreed on everything you needed.”
“Is it good if I go and collapse on the set?” I said. “Wouldn’t that be worse?” But they didn’t listen, and they knew me. They knew that no matter how I felt, I got through the workday. Yes, that was me, but this time, I wasn’t so sure. I was no longer in charge of my body, and I could feel it.
The next morning, against my better judgment, we packed up and went. Maybe Miami would be restorative. I’ve always loved the sun, but by the time I got there, I’d been a week without gluten, and my skin was so yellow and peeling that I looked terrible. After my first wardrobe fitting, which was a nightmare because my body was so swollen, I went out to the beach to sit quietly and try to chill for a minute before the job really got started the next day. After just a few minutes in the sun, red bumps began to form on my skin. I looked like I was having some sort of allergic reaction. Then I started to feel extremely jittery. I’d been on the verge of a panic attack, but this felt more serious, like something big was coming on. I took more Xanax, then went back to my next wardrobe fitting. It didn’t go well. My mood was drastically up and down, and my whole body ached. I was irritable, angry, and scared. The wardrobe people weren’t happy with me. Then it was on to makeup, and when I told the makeup person I would be doing my own because I couldn’t have anything on my skin with unknown ingredients, she wasn’t happy with me, either. I was also dealing with this weird sun rash that was blistering and hurting everywhere my skin had been exposed to the sun.
Finally, Jackie and I went back to the hotel and I tried to get some rest, but not a moment later, the director called me. He wanted me to go out with him and the lead actor to talk about the role. I told him I couldn’t go because I couldn’t eat anything. That was true, but what I didn’t tell them was that I felt like I was on the edge of a nervous breakdown, and I didn’t want the director to see it. I could tell I was rubbing everybody the wrong way and nobody knew what I was talking about when I tried to explain why I was acting the way I was acting. I told them I just got diagnosed with something called celiac disease, but nobody knew what that was, and more importantly, nobody cared. In the meantime, Jackie had gone to Whole Foods in Miami and brought back a bunch of gluten-free food so I could finally eat something. By that evening, I was having continuous hot and cold sweats, and by 9:00 p.m., I was having waves of consecutive anxiety attacks. I was eating Xanax like they were Tic Tacs, and they weren’t doing anything to help me. I sat down to try to memorize my lines, which usually came easily for me, and I couldn’t remember a thing. As much as I went over the lines, my mind wouldn’t retain anything. My brain felt so scrambled, I couldn’t even focus on the words I was looking at. Finally, I gave up. I had to try to get some relief from what I was feeling. I put myself to bed and prayed for sleep. No such luck. I didn’t have to be on set until later the next day, and I was grateful for that because I knew it was going to be a long night.
All night, I was up and down and up again with extreme burning pain and pressure in my chest, like I had swallowed a balloon of fire. I thought I was having a heart attack. I stumbled out onto the fifteenth floor balcony and looked around, and it was like being on Mars. Everything looked strange, as if I’d never seen it before—the ocean, the buildings, the sky, everything was odd. When the anxiety and the chest pain got so bad I couldn’t stand it anymore, I called for Jackie. I was physically stuck on the balcony, in a state of pure panic. She took one look at me and said, “We need to get you to the emergency room.”
By the time we got there, Jackie was half carrying me because my knees were giving out completely. A doctor coming in at the same time grabbed a wheelchair for me, and they took me into a room immediately because I couldn’t stand or even hold myself up in a waiting room chair. My head tossed back and forth like a bobble head—I couldn’t control it. The doctor ordered some tests and said I was extremely dehydrated and my blood pressure had dropped dangerously low. (I would later discover that I often react to gluten in this way—yet another symptom that had nothing to do with my stomach.) They gave me an IV and the doctor checked me out more thoroughly. Then, as I waited for the IV to finish, a nurse came into the room and started talking to me.
I tried to answer, but I was shaking so violently that I could barely answer her, my voice coming out in a stu-tu-tu-tutter, as if I were sitting in an ice bath. I couldn’t gain composure—I was all tremors and drenched through. Even the sheets were soaked. Finally, I managed to get the words out to the nurse:
“I think I’m detoxing.”
She looked at me, surprised. “Are you on drugs?”
“N-n-n-no, I h-have this th-th-thing c-called c-c-celiac d-disease,” I stammered.
“What’s that?” she said.
“I w-was j-just d-d-diagnosed, s-someone t-t-told m-me th-th-there w-was a d-d-d-detox…”
My blood pressure was frighteningly low and I desperately needed fluids. I lay shivering in the bed, which was soon drenched in sweat. After about an hour, the doctor came in to check on me, and told me that the burning in my chest was most likely from my stomach. He prescribed Prevacid, and said that although he would like to keep me for observation, he saw that I had celiac disease, and they had nothing in the hospital they could feed me. So he sent me away. By this point, Jackie had called my manager, and everyone on set knew what was going on. No one was very happy, least of all me, but I was replaced and able to go home. Jackie took me back to the hotel and started to plan how to get me back to New York. It was exactly what I hadn’t wanted to happen.
The next morning, Jackie and I took the train back to New York. A plane was out of the question because the panic attacks were constant. We spent twenty-four excruciating hours on that train, loaded up on Prevacid and Xanax.
This was the sickest I’d ever been. It was my absolute low point with this disease, right after going off gluten. Everyone told me that I would feel fine when I got off gluten, and it simply wasn’t true, but nobody told me that I would get so sick after going off gluten. Was this the detox the nutritionist mentioned? And more importantly, when would it end? I realized that just because you stop eating gluten doesn’t mean you’ll suddenly feel great, especially if your celiac disease is severe. When I got back to New York, I was a mess. All my senses were on high alert and everything disturbed me—the sunlight, noise, people, cars, light, even the air hurt when it hit my cheek, even the sunlight made my eyes go wild with burning and my skin flare in rashes. Walking down the street to Whole Foods brought out red angry bumps on every inch of exposed skin. I wore dark sunglasses all the time to minimize the painful stimuli all around me. The only thing that kept me going was knowing it was almost time for my appointment with Super Doc.