All Of That Struggle, and Such a Simple Solution

I found Mark’s Daily Apple through a fortuitous and random conversation one morning with the guy I was seeing sometime around 2010. We were lying in bed, dreaming up delicious Sunday breakfast ideas and started talking about bacon, which then led to a heated argument about bacon, cardiovascular disease, dietary fat… oh boy! He name-dropped yours and MDA, and it made me step down from my high horse (I was a recent doctor of physical therapy graduate) and take a whole new look at nutrition that has- no exaggeration- completely changed my life.

Here is my story:

I had been swimming competitively since age 10, so I knew my body. I had always been tall, thin, and full of enthusiasm for whatever I pursued. Back in 2002, as a senior in high school, I started to feel something quite different. If I approached my physical limits, I would feel sluggish and weak and there was no way to push through. Each week, I swam slower. A few months later, I started noticing more and more of my hair falling in the shower drain and in my hair brush. As someone who had always been a night owl, I found it strange that even during matinee movies the second I sat down I would feel tired and fall asleep, like turning a switch. I could sleep ten to twelve hours and still would wake up exhausted. I even passed out a few times for no apparent reason. At this point I felt fatigued constantly, was having trouble finding enough energy to pay attention in class, and I knew something was wrong. I told my mom (a nurse), and we decided to wait out the end of the school semester. After graduation, I took a solid week off and basically slept and rested all day, after which I felt completely normal. I shrugged it off, and headed off to college a few months feeling healthy.

As a frame of reference, my diet at this time was atrocious. I didn’t like most meat, so I would eat processed meat approximately once a week. I hated eggs. I didn’t have much of a taste for any vegetables, so again, maybe once a week one would make it to my plate. I liked bananas, kiwis, and a few fruits. I loved processed food and would primarily eat cereal, bread, crackers, cookies, and pasta. I also struggled with having very little musculature on my body despite being active. At 5’10” my calves were so narrow that speciality narrow boots looked like fishermen’s boots on me! My abdomen fluctuated between being completely concave and sunken or distended to the extent that people would ask me if I was pregnant. My face had a constant red rash and break outs of both acne and rosacea. All of these things made me self-conscious.

When I went off to college, unexplained symptoms struck again. Except this time once I got to the point where I was passing out and fatigued, I kept going. My immune system went nuts. I acquired very bad strep throat, pink eye in both eyes, an ear infection, and a bad UTI all at once. Every week for the rest of the semester I felt worse despite several courses of antibiotics. Fast forward to end of semester: I finished finals, I rested for our 2 week holiday—100% better.

This became the pattern. Three more semesters exactly like this. It started to take a toll on my endurance, and I could not even walk up the stairs to get to my classes without stopping and resting for several minutes. I was embarrassed to be in social situations because I couldn’t focus and didn’t feel like myself physically and mentally. I was struggling in my classes for the first time in my life. I decided that fall semester my junior year would be different: no matter how sick I felt, I would push even harder.

That didn’t go well. I crossed into the next threshold of bodily rebellion. I started feeling sharp abdominal pains as if I were being poisoned followed by bouts of vomiting after taking my birth control, drinking milk, eating anything fatty, taking even a sip of alcohol, and sometimes after indecipherable aggravations. I stopped getting my period. One morning I woke up and could barely open my eyes. I felt confused to the point where I was staring at people talking and pretending to understand what was going on. Morning classes were a blur, and as I sat in my French class, I somehow fell asleep in the front row. My professor woke me up—not too happy—and sent me to the school doctor. Even though there was an entire waiting room full of students, she took me right away. I didn’t question it, but the second she sat me down she explained why: I had yellow skin, yellow eyes, and that awful, unmistakable death-like look of jaundice. She diagnosed me with mono (many of the other times I had been to the health center they suspected mono but the test was always negative). I was put on immediate bed rest until my liver started to cooperate. I could barely stomach eating, so I would munch on saltine crackers and eat unseasoned ramen but little else. My liver enzymes actually tested worse and worse, despite the rest. I got to the point where I could barely eat anything, but then slowly, I started feeling better. Hallelujah.

Spoiler alert, that’s not the end of my story. The very next semester it started happening. Again. Despite being told that you could only get mono once. I was emotionally devastated, scared, and yet determined. I gathered all of my medical records and went to see a doctor off-campus. He was dismissive and cold and told me that I was a woman, and women get depressed. That was his medical advice. End stop.

I was embarrassed to the point I didn’t seek further medical attention and tried to make some changes on my own, this time being a bit kinder to my body. I cut my work hours to almost zero, my class schedule in half, my workouts out altogether, and I just tried to get by. I was able to finish my last few semesters of college with fatigue, constant infections, and poor mental clarity, but I finished! I started working as a physical therapy aid full-time and teaching swim lessons to make money before grad school, and suddenly I was thrown off balance again. I could feel my body crashing as it had before, and I ended up making the radical decision to take 3 months off before physical therapy school to convalesce. This seemed to work, because I made it through 3 years of graduate school with only occasional and much less dramatic periods of illness.

That brings me to 2010, lying in bed, chatting about bacon. This little argument inspired me to read from the amazing Michael Pollen and delve into the wonders of the MDA blog. Mark’s words hit home as I had already begun to understand the importance of rest and recovery, listening to my body instead of overriding its messages (a work in progress), and the way food could make me feel. I drank the kool aid. I was inspired by the large body of evidence in the primal diet and primal lifestyle. Little by little, I started learning how to love vegetables and to prepare them well, to embrace fats, to eliminate grains, and to enjoy delicious meat and eggs. I started eating real food. Relationships don’t change over-night, so neither did mine with food. I had a long way to go, but I could feel a difference in my digestion and my energy. My acne and rosacea disappeared completely, and I felt like I had at least some control in my health.

Unfortunately though, my health continued to decline. It was not exactly the same as it had been before. I was constantly fatigued, but rarely did I have the ear/eye/throat/bladder infection extravaganzas as I had in the past, nor would the symptoms go away anymore with a little extra rest for a week or two. Instead, I started having random, scary symptoms. Over the course of the next four years, several times I would develop excessive water retention, followed by coughing up liquid deep in my chest, followed by pneumonia, followed by waking up in the middle of the night barely able to breathe. I would prop myself up on four pillows so that I was almost sitting up so that I could breathe. I would have fevers in excess of 104 degrees sometimes every Friday after a long week of work and would lie in bed until Monday morning. One time I felt desperately thirsty and was drinking water by the liter until I collapsed with squeezing in my chest. My left arm would randomly swell up. I had strange ulcers in my mouth. Other times my right eye would randomly start dilating, once to the point where I could not see anything out of it for hours. I would have sharp abdominal pain every time I was on my period that caused me to double over. I could keep listing crazy symptoms all day. I lived in fear. In addition, the years of being ill had led to metabolic damage. I could barely eat 1000 calories a day without gaining weight, so I slowly started gaining more and more weight. I had prided myself on being fit, so this crushed my self-confidence.

Doctors led me down many rabbit holes. Some were dismissive, cold, and made me feel embarrassed or crazy for telling them what was happening. Others were compassionate and did what they could to help, but they could only put small pieces of the puzzle together. I tested positive for several antibodies that suggested autoimmune disease and was told it was likely lupus, and steroids seemed to help my “infections” better than antibiotics which was quite telling, but my symptoms never stopped recurring and every day was a struggle.

I also attempted to conquer my body by running marathons, hiking mountains, and portraying a life of a “healthy woman.” These outward goals always led to me being very sick, sometimes for months, but for some reason I continued to fight my body every step of the way. I climbed Mount Whitney, the highest peak in the contiguous United States (with a broken tailbone no-less). Two weeks later I came down with a kidney infection that wouldn’t respond to antibiotics or steroids and kept me in bed for 2 months with fever, fatigue, and brain fog as well a complete loss of appetite. I kept frozen salmon, avocado, fresh orange juice, and almond butter in my kitchen and if I ate ONE of those things each day, I felt accomplished. I became scared that I was losing too much weight, but surprisingly, I felt stronger each day. Slowly, my appetite returned.

Finally, two months later I felt completely healthy, and I decided to go out to celebrate my birthday. My first day out. My first day with food outside of my kitchen. I ate fried chicken, drank beer, and polished it off with a birthday cupcake.  The next morning I woke up with 104 fever, vomiting, the works. It started all over again, and I had an emotional break down.

All of these years I had tried to be patient and to trust my doctors, my body, God, and the universe to somehow fix this, but I could no longer handle living my life in constant fear and confusion, and I had reached a breaking point. The merry-go-round of looking for outside help, finding no clear solution, giving up, and then starting all over again was getting old. I truly believed I needed to accept that I  would never have the health and energy of a “healthy” person, so I should start adapting my life to live with my limitations as best as possible. I started tracking every symptom each day, I started dialing back my work hours, my social time, and my exercise, and this seemed to help. I started eating much cleaner according to the Primal Blueprint, maybe 90/10. I slept 10 hours every day. I felt “ok,” but I was depressed at the outlook of my future.

One fateful day, June 21, 2014, I decided to try keto, which I had recently read about on Mark’s blog. It was actually easy for me to get into ketosis for the first time, because my diet had been consistently clean for the six months preceding it. I woke up on day 3, and it was crazy. I could see clearly. I felt well-rested in a way that I didn’t remember existed. I felt boundless energy. I was strong. I could breathe better. I still remember that feeling so clearly. I actually feel healthy! Even when I felt “ok,” I didn’t realize I was never actually feeling well.  It had been so long. I peed on the stick, and it was purple: ketosis was achieved. After a week of eating keto, which I had never intended to maintain permanently, I decided that I would add one half piece of whole wheat pita bread to my diet (I know not primal at all but I feel lucky I made that random exception to my diet) every other week and to attempt to cycle into and out of ketosis. The next morning I woke up with mouth ulcers, a fever, brain fog, and the beginnings of a UTI.

It hit me. The writing had always been on the wall but I hadn’t I seen it. This was clear, objective measures I couldn’t ignore: Do I have celiac disease? I got back into ketosis over the next few days, and all of the symptoms cleared. Like magic. I grabbed a beer, walked down to my hot tub, and cracked it open. This would be my test (and with bittersweet sadness my final beer). As I enjoyed the crisp, cool refreshing beverage, all of the things I had been through over the past 12 years ran through my mind. Even if you reread my story, it seems so obvious once you know. All of that struggle and such a simple solution. Yes, the ulcers and the fever came back the next day. I did a week of completely primal, gluten free, but not keto to test out my theory. I remained healthy. (I have the genetic marker and antibody for celiac but am unable/unwilling to do a 12 week challenge).

Over the next four years, I gained muscle I never knew I could gain. I can wear narrow boots quite well now, and I have muscle in my core and arms. I live a completely normal life. I can run, jump, and play, so I do! I have slowly forgotten the feeling of that daily struggle and fear. I have continued to change my relationship with food. While I am always gluten-free, I am 90/10 with primal eating and cycle in and out of keto. I can finally say that when my body tells me something, I listen. Whether it’s to fully recover between workouts, to limit chronic cardio, to sleep, to get fresh air and daylight, to eat more, or to reach out and connect socially, I no longer try to fight those impulses for my own ego’s sake. I preach this to all of my patients and all of my friends.

Here is a picture of me on Halloween dressed as the iconic Leia finally with some lean muscle!

Most importantly, I have learned to open the discussion of this diet and lifestyle to people around me.  Not everyone has celiac disease, but 1% of the population does and most are not diagnosed. Many people have autoimmune conditions, and we have connected deeply on how similar food journeys have changed their lives. Many people simply have weight to lose and insulin resistance. My next goals in my personal journey are to gain a six pack (something that symbolizes both inner and physical strength to me) and to share this lifestyle with as many people as I can.  Keep spreading the light Mark!

– Maureen

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