by Jody Berger
“Jody?” the barefoot woman asked. “I’m Jillian, go on in.”
I went in and as soon as Jillian joined me, I exploded into a speed talker’s version of my year of fear, rattling on and on about doctors and terror and tests. I fired away as if I had to get out all the words before I ran out of air. Midway through my torrent of words, Jillian said, “All right, stand up. Let’s have a look.”
Blond and wearing dark-framed glasses, Jillian was curvy and looked very Boulder—comfy clothing and no makeup. She turned me around, put her hands on my shoulders and felt along my spine. “Lay down,” she said, motioning to the massage table. “On your back.”
I looked at the ceiling, and she took a seat at the head of the table. She ran her hands under my shoulders and moved them around as my mouth continued firing at full speed. “What do you think lesions mean? Do you think they’re still there? Do you think they’ve gone away? Do you think they mean anything at all? What’s osteopathy? And what’s craniosacral osteopathy?”
Jillian continued to work on my back, and as best she could, she tried to answer my barrage of questions until suddenly, there was no need. I might have been midquestion when I abruptly fell into a deep, deep sleep. Just like that, lights out. Jillian continued to do her thing. And maybe twenty minutes later, I was nudged out of sleep by a loud buzzing sound, rhythmic and far away. In my slumber, I thought I was in a large, cavernous room like an empty gymnasium, and I wondered where. I wondered who was snoring on the other side, maybe twenty or thirty feet from me, who had nodded out under the bleachers. I kept my eyes shut and tried to figure out where I was when I realized the sound was coming from my own nostrils.
They seemed so far away. Or else I had been.
Feeling slightly confused and mostly embarrassed, I opened my eyes and saw that Jillian had slid over the side of the table and had her hands under my lumbar spine.
“Wow,” I said. “I musta fallen asleep.”
She smiled.
After a while, she said, “OK, Jody. Take your time getting up.”
I drove home feeling different. I had no idea what just happened, not intellectually anyway. But physically, my body understood that something dramatic had shifted. Places in my body that I hadn’t known were tight—like my jaw—suddenly felt softer, less rigid. And my upper back, that spot behind my heart and between my shoulder blades, felt bigger, more expansive, like there was more room and more mobility.
At home, I walked Riley, worked through the afternoon, made dinner, tried to read and went to bed early, falling asleep without time to think about it. Just out. In the morning, everything still felt different and warm like later afternoon when the sun bathed everything in warmth. And it was only seven—hours and hours before the golden hour.
I knew I would see Jillian again. The decision wasn’t even a decision, not a conscious, rational conclusion. I knew I’d go see her again like I knew I’d eat lunch. I knew in my bones and in my cells that whatever she did was beneficial, necessary even. And that she was kind. I knew that. Even though I slept through most of our time together, I knew she was kind.
A week later I followed a similar routine—woke, walked the dog, ate breakfast and drove to Boulder. I decided to keep my appointment with Dr. Desai too, mostly because she was also kind. She didn’t treat me as if I were broken and needed fixing. She said I was not far from optimal health. And now I realized why I kept both doctor’s appointments: I wanted optimal. Close to optimal was no longer enough, and these women were going to get me to optimal.
In Dr. Desai’s office, I checked in and took a seat. Dr. Desai quickly came to show me into her office. “I can’t believe this but I’m happy to see you,” I said, surprising us both.
“Well…good,” she said, smiling tentatively. “I’m glad.”
Then I remembered I had to back up and fill her in on my time with Dr. Lee and how awful and scary it was and how the tooth-fairy-cum-neurologist said I should keep ice in my pockets or something really awful would happen in Kenya.
“So how did you feel in Africa?” Dr. Desai asked.
“Great,” I said. “I mean it was hot, but I felt great. No tingling, no weakness, no weirdness.”
Dr. Desai’s small round face lit into a smile that included me. “We’re both in on the joke, right?” she seemed to say. “We’re both tracking this, aren’t we? Heat makes MS patients feel bad and you felt great in the heat—you get it, don’t you?”
I can read a lot into a smile, and I smiled too. “You know, though, I felt great there and I’ve been a little bit off since, can’t put my finger on it exactly, but maybe a little sluggish since I’ve been home. This is strange but in Africa, I felt like I had energy all day long. Since I’ve been home, I feel like it goes up and down and midmorning and midafternoon, I need a cup of coffee to keep going.”
Dr. Desai said the jet lag should be over by now and asked what I ate in Kenya. I listed the limited diet: carrots, potatoes, rice and nuts, with the occasional bite of roasted goat.
We chatted a little longer, and then Dr. Desai took a bunch of pulses in one wrist and then the other. “Your vata is pushing pitta,” she said, meaning that the wind-air part of my constitution was messing with the fire part, agitating and inflaming my body. “And you’re colon’s still not happy.” She jotted a few things on the note pad in her lap. “Maybe it’s something you’re eating here. We could try an elimination diet.”
No dairy, no eggs, no gluten, no nuts, no alcohol, no caffeine and no nightshade vegetables for three weeks and an herbal mixture called RepairVite after each meal. It’d be tough, but as she explained it, it started to sound more doable, so I signed on.
I stopped at the grocery store on the way home, loaded my cart with vegetables, parsley and chicken. I boiled it all into a soup that was a little boring. The RepairVite was equally uneventful—a slightly sweet brown liquid—and on day one, after the first meal, I was sure the elimination diet was no big deal.
Twelve meals in on day four, I had other ideas. I was craving foods I hadn’t eaten in years. I wanted spare ribs early in the morning and wished for pomegranate seeds that afternoon. I chalked all of it up to the restricted diet and gave in to none of it.
By day five, I wanted to get out of the house and eat in public. I just couldn’t figure out how. It’s possible to avoid dairy or eggs or gluten or nuts or alcohol or caffeine or nightshades—or two, possibly three of the group—but avoiding all seven in a restaurant seemed insurmountable. I stayed in.
By day six, craving company, I invited Lisa over to watch a movie. “Sure,” she said. “Can I bring something? Like, I don’t know, water?”
“I know. I’m not that fun to eat with on this diet.”
“It’s only a week, right?”
“Three.”
“Oh shit. Good luck with that.”
Thankfully, she came over anyway.
When the three weeks were over, I boiled an egg, ate it and continued on the no-nothing diet for a couple days to see if I reacted to the egg. Nothing happened so I tried dairy and waited for three days. No reaction there either, so I moved on to gluten. For dinner, I boiled pasta and tossed it with olive oil, lemon and parsley. All in all, the meal was boring and bland but the texture felt familiar and soothing and almost foreign after four weeks without it.
The next morning, before I even got out of bed I knew something was wrong. My body ached like I’d been in a car wreck that I couldn’t recall. I hadn’t. I took Riley for a walk and didn’t feel any better. I came home, fed the pup, stretched a little and sat down to meditate. Sitting cross-legged on the floor felt like hell. I could hardly focus on my breathing because my hips were screaming. Same for my ankles and feet. When I stood up, I realized there were other problems. My knees were sore, my shoulders felt wrong, my low back was tight and even my elbows were squawking like something had happened to them.
I showered and went out into the world, thinking a change of venue would help. I had a consulting project and decided to work at the Tattered Cover. Bookstores are like Disneyland for me—the happiest place on earth. With all those books and thoughts and carefully chosen words, there’s no room for bad feelings or ugly actions. Or at least that’s what I thought until I walked in. The guy at the counter said hello and I scowled at him.
It was like flipping off Mickey Mouse but I couldn’t help myself.
I went to the coffee counter, ordered a cup of mint tea and found a table in the front room. At another table, two women were talking about a television show. I nearly turned to glare at them like they were invading my private office. Yikes, what am I doing?
I got through the day without picking a fight, though several times I felt the urge. I crawled in bed early because all my joints still ached and lying down seemed like the only good option. I slept fitfully and woke the next day still uncomfortable—a little less achy but still achy. I didn’t add any more new foods that day or the next. After a few days, when I felt normal again, I went to a diner for lunch and ordered scrambled eggs, no toast, no home fries—just a side of fruit and cup of decaf.
By the time I stood up, I felt like I’d downed a Red Bull or twenty. I couldn’t sit still, couldn’t focus, couldn’t stay with any thought or conversation.
I went home and tried to unwind. When my brain settled, I got some work done. And in the evening, when I was ready to eat again, I cooked rice and sautéed vegetables in olive oil. I ate nothing more interesting than that for the next four days until I could see Dr. Desai.
Inside her office, sitting next to her in the big comfy chair, I told her that gluten felt like a car wreck and that caffeine, or the little bit of it in the decaf, made me want to jump out of my skin.
“Good to know,” she said. “You should stay off gluten and avoid caffeine.” Her smile was the same sweet and inclusive grin. We’re both seeing the logic here, right? And yeah, we were, almost.
“A gluten intolerance or sensitivity could explain a lot of things—the reason you felt bloated after meals your whole life, the intestinal distress throughout your childhood, the chronic constipation you’ve experienced,” Dr. Desai said.
“It could also cause malabsorption, which would explain the vitamin deficiencies, even the tingling in the fingertips and toes,” she added. She then checked my pulse in one wrist and said, “Oh yeah, you’re colon is much happier now.”
“Wait,” I said. “How could gluten be the answer? I’ve been tested for celiac disease. I’m sure of it. And the test came back negative.”
“A blood test?” she asked. I nodded and she continued, “There are false positives and false negatives. And, really, what do you think is a better diagnostic tool? A lab test or your own body?”
And finally, finally, her logic won me over. “When you put it that way…It’s funny, you know, I was so mad that Dr. Lee deferred to the MRI, like it was a better test than my body. Now that I think about it, that wasn’t the first time. I was annoyed that Silver thought the test was more important than me explaining how I actually felt—especially when the drugs worsened my symptoms and then I got better after stopping them. Same for Duncan with the heavy metal test and the chelation that made me feel so lousy. And yet, I did the chelation for months, trusting the test results more than what my body was telling me…Faith in technology and medical testing—those are tough habits to break!”
We sat for a moment until another thought popped into my head.
“So how does this work?” I asked. “How does gluten gum up everything?”
Dr. Desai explained that for people who can’t tolerate gluten, consuming it irritates the lining of their intestines. And when the lining is irritated, the intestine can’t function properly. In some people, the body reacts to gluten by trying to release the contents of the colon quickly—my life as a kid summed up right there!—and in others, the body holds on to food too long, or my life as an adult. And over time, if the person keeps eating gluten, it irritates the very fine gaps in the intestine where broken-down food enters the bloodstream. The very fine gaps grow larger, making poorer gatekeepers. Larger particles slip through the gaps and travel with the blood throughout the body. Because the body recognizes the undigested particles as foreign objects, the body creates an immune response that then attacks the undigested gluten. In other words, the body looks like it’s starting to attack itself.
Bingo! “Oh,” I said, “I can’t believe that all of my issues stem from a teeny, tiny valve problem. What gets in and what stays out. I think that’s what Dr. Lee was talking about when she said I had leaky gut.”
“Yes,” Dr. Desai said. “And when the intestine’s not working properly, it’s difficult for the body to absorb the nutrients it needs from foods.”
That would also explain all the weird nutrient deficiency results I’d had. I was flabbergasted. “I can’t believe that basically everything that has been plaguing me over the years since my childhood, and especially this year, is ultimately due to a serious gluten problem.”
Dr. Desai took the pulses in my other wrist, reading the signs from an Ayurvedic perspective. “Hmm,” she said. “Your vata’s still pushing pitta.”
Dr. Desai wanted to balance my doshas—we both did—so she outlined her plan to get me there. It included vitamins B and D, fish oil and the herb ashwangandha. We talked about abhyanga, of self-massage, and I said I would try that too. She also suggested I make fennel tea to settle my stomach and take a probiotic at night. Sure thing, I said, and agreed to do it all and return in two months.
Over the next few weeks, I returned to the bookstore (kinder and calmer now—no more scowling at the nice man at the desk) to learn more about my gut. I found Celiac Disease: a Hidden Epidemic, by Dr. Peter H. R. Green and Rory Jones. I didn’t even have to open the book to see that tingling in the extremities is a common symptom of gluten issues. The good doctors listed common signs on the back cover. Wonder why neurologists don’t start there? I wondered. Why pull out the big guns like an expensive and terrifying MRI? Why deliver the nasty and forever diagnosis when gluten could be the culprit?
Fired up, I kept digging. In The Inside Tract: Your Good Gut Guide to Great Digestive Health, by Dr. Gerard E. Mullin and Kathie Madonna Swift (MS, RD, LDN), I read how involuntary muscle twitches sent Mullin to neurologists who gave him terrifying answers. The MS specialist said MS and suggested a lumbar puncture to test Mullen’s spinal fluid. The test sent him into searing pain. The fix for the pain, a blood patch, gave him a painful disease called arachnoiditis. The “cure” for the arachnoiditis, intravenous steroids, left him with cardiac arrhythmia, ulcers and an immune system so suppressed that it opened the door for pneumonia. He didn’t have MS but in search of it, he suffered all kinds of other doctor-induced trauma. This downward spiral left Mullins, a world-renowned gastroenterologist, at “the end of the road with Western medicine.”
And this was a guy who had traveled that road long enough to graduate from medical school, complete an internship and residency, open a practice, and see patients for a dozen years. I’d only taken a few steps and found the path crowded with fear and panic and reasons to pull off.
I also found that I wasn’t alone. In addition to Mullin, everyone I knew, it seemed, knew someone who had been misdiagnosed with MS. Real culprits included misdiagnosed Lyme disease, a benign tumor on the spinal cord, the lingering effects of a car wreck and—yep—gluten sensitivity.
In Overdiagnosed: Making People Sick in the Pursuit of Health, Dr. H. Gilbert Welch wrote about a clinic where many patients suffered sinus pain. Doctors routinely ordered X-rays of the facial sinuses, and nearly every film came back with a diagnosis of sinusitis. To check the veracity of this decree, Dr. Welch ordered an X-ray of his own face, and despite having no symptoms, he was diagnosed with sinusitis.
“Our diagnosti
c technologies are of such high resolution that we are discovering more ambiguities and more surprise abnormalities,” he wrote, adding that the ambiguities and abnormalities lead to more testing, more scanning, more ambiguities and more treatment—even as the patient remains asymptomatic.
“While relatively few people are said to have disease when doctors examine their outsides,” Welch wrote, “relatively many are said to have disease when scanners examine their insides.”
Welch concluded that overdiagnosis leads “millions of people to become patients unnecessarily, to be treated needlessly, and to bear the inconvenience and financial burdens associated with overdiagnosis.”
I understood. And felt like I had dodged a bullet. Because Dr. Silver didn’t address my questions or ever return my calls, I went into stubborn reporter mode and found answers. And out of habit, I kept searching. And I kept finding reasons to rule out the MRI.
In my favorite study, a widely known sports medicine doctor sent thirty-one healthy professional athletes—baseball pitchers with no pain and superhuman throwing arms—to get MRIs. These men hurled a ball upward of ninety miles an hour and almost all of their scans said to operate. The test showed abnormalities in 90 percent of the “patients.”
In Selling Sickness: How the World’s Biggest Pharmaceutical Companies Are Turning Us All into Patients, Ray Moynihan and Alan Cassels explain one possible reason for the abundance of medical diagnoses. In gruesome detail, they report ways drug companies manipulate data and doctors to fulfill the companies’ fiduciary duties to shareholders.
As I read, I reconsidered my thoughts about the two neurologists who were so committed to the same MRI and MS drugs. In my mind, and in conversations with friends, I had cursed them both and called them stupid and mean and lazy, but I’ve come to realize that, like most doctors, they’re probably smart, well-intentioned people who entered medical school because they wanted to help people. Throughout their coursework, residencies, internships and other training, they learned of valuable tools including the latest and greatest technologies, intricate pharmaceutical therapies and surgical interventions. And like many doctors, they probably received little to no education on food and nutrition and how those two factors can affect a person’s health in other areas. If the law of the instrument says “To a man with a hammer, every problem looks like a nail,” then the opposite must be true too. If food and nutrition aren’t in the toolbox, they can’t be the solution.