What am I Eating?

I grew up on a diet of Kellog’s cereal, skim milk, white bread, deli ham, peanut butter and jelly, Twinkies and Hostess Cupcakes, Fruit Drinks, Campbell’s soup, Kraft Macaroni and Cheese, Hot Dogs and canned beans, Oreos, Pinwheel (marshmallow) cookie, Hershey candy bars, Ice Cream, Doritos, and soda (in other words- junk!). On a special occasion, my mother would make “greenbean casserole” of which the directions were found on a Campbell’s soup can. We also had a box of Dunkin’ Donuts on some Sundays. If we ever ate “out”, It would be at MacDonald’s or Papa Ginos. I ate this way for 18 years. By the time I graduated from college, the fanciest restaurant I had ever eaten at was a Chinese food restaurant. I grew up on the campus of a private high school and when in session, my family would often eat our dinners in the cafeteria. This is where most of my “nutrition” came from. This diet, along with the criticism and lack of love I was receiving on a daily basis, formed my constitution. Suffice to say, I had a lot to overcome.

I was speaking with a woman who attended my talk recently about our gut issues and she mentioned that 80 year olds are not suffering from these problems (and don’t understand why we are) because they grew up eating real farm food, which provided them with strong constitutions. Until she said that, I hadn’t thought about the role the diet I consumed in my formative years was playing a part in my current state. My heart sank a little more.

After college, living on a very low income, high in college tuition debt, and not yet having learned to cook, I continued to eat cereal, soup, bread, dumplings, candy and cookies as my staples. I lived in a room in an apartment in which I did not feel comfortable. It wasn’t until I moved into my own apartment that I tried cooking fish and other meals for the first time. Ten years ago, feeling heavier than I wanted to, I bought a no carb diet and workout book and began making the recipes from it (as well as following the strength exercises). This was a deprivation diet, and after the initial 2 weeks, I had a hard time sticking with it. However, three meals from the book became my staples over the next years. I would cook batches of turkey chili, Basque chicken, and ratatouille on the weekends, and bring portions into work to have at lunch. One of the recipes was for tumeric chicken strips. Unfortunately, there was a mistake in the recipe, calling for WAY too much of the spice. When I tried it at work the next day, I felt like I was being poisoned! I could not take more than 2 small bites. Since that time, I have not been able to eat tumeric spice again (which is unfortunate as this is a highly anti-inflammatory food!)… The memory of that incident remained too strong in my body. My breakfasts since that time have also been based on a recipe in that cookbook: egg whites (which turn out to be the bad part of the egg for those with autoimmune diseases!) with shitake mushrooms and tomatoes, and turkey bacon. I went back to drinking coffee and eating cookies and chocolate daily to satiate my sweet cravings. I’ve always felt that I needed to have something sweet after every meal.

Since returning home from the PCT, I have not felt like cooking at all (aside from the same breakfasts I just mentioned). Transitioning back to this other life is very, very difficult (today I was thinking about how that time felt and I am very happy that I am no longer in that space!), and cooking for one person is never fun anyway. Because of my continued stomach pain, I was eating Greek yogurt with berries for lunch. And I would buy soup, or already cooked food from the Whole Foods hot bar for dinner. I thought miso soup was a healthy thing to eat throughout the winter.

In the last few weeks, I have discovered that most of the things I thought were “good” for me (eggs, tomatoes, yogurt, miso soup, turkey chili) were actually slowly killing me!

For the last three weeks, my diet has consisted of:

Breakfast:
-A smoothie with spinach, ginger, turmeric, berries, a bit of green powder, a bit of brown rice protein powder, and goat kefir.
This week, I will start to add in some celery, cucumber, and papaya.
-Green tea

Afternoon “snacks”
-Plantain Chips (LOTS of them! This is my new snack since I can’t have any nut butter, bars, or chocolate). I eat two 9 ounce tubs per week.

-8 ounces of Bone Broth per day

-Usually a sauasge

-(On days where I feel REALLY awful, I allow myself to eat some cacao covered coconut pieces)

Dinner:

-Salmon, chicken, or turkey, kimchi, an array of vegetables consisting of any of the following: collard greens, broccoli, avocado, sweet potato, roasted butternut squash, and occasionally a brussel sprout (blech!)
(A Thanksgiving dinner every night!)

-1/2 bottle Ginger Kombucha

I am following the Auto Immune Paleo diet (an anti-inflammatory diet), with a few exceptions.
Kefir is not approved on this diet, as it is dairy. However, I believe that goat’s milk kefir is okay for me at this point, as it does not contain the harmful components that cow’s milk does.

The brown rice in my protein powder is not approved as it is a grain. However, I personally feel that I need some protein in my smoothies to make them more substantive, and of all the possibilities, brown rice is the safest protein powder base for a person with digestive issues.

My green powder contains goji berries, which are not approved, but I am really not worried about this!

For the first four days of my diet, I ate some sliced bell peppers (gasp!) with my mid-day sausage.

I’ve also eaten sausage with unapproved spices such as paprika and chili, simply because I could not find an alternative.

Cacao is not approved as it is a bean. Sometimes, a girl needs a treat!

The Auto Immune Paleo diet (like any diet) is not a one fits all plan. It has only been around for 2 years and clinicians are now seeing patients who have strictly followed this plan (and are down to 10-15 foods) for a full year or more who are still not healing. There are many possible reasons for this result. One is that every individual has food sensitivities that are specific to them. Some of these foods are on the approved list for the AIP diet. Some people are allergic to the gelatin in bone broth, for example. Despite being told that bone broth should help them, it is actually hurting them! Food allergies and sensitivities cause inflammation in the body and inflammation causes disease. At this time, there is only one fully comprehensive food sensitivity test available. It is performed by Cyrex Labs and is called Array 10. Unfortunately, insurance does not cover any of the cost. A health care provider must order the test and the patient pays the $680 cost. Most of us suffering from chronic diseases are not only not able to work (or work minimally) and can not afford even our basic cost of living, but unfortunately, aren’t able to pay for this kind of information that we need to heal ourselves. Other factors that may cause a person to not get better are hidden co-infections (also a new frontier). For example, a person may be under the attack of several active chronic viral infections that they are not aware they have and which aren’t helped by diet. The science behind these diseases is very, very complicated (immunoglobulins, antigens, antibodies, etc)! Sometimes, a person who is being treated for gut issues will not heal because the brain component of the brain-gut axis is impaired and not included in treatment. The vagus nerve might not be properly communicating to the abdomen. Other people have histamine sensitivities. Because the number of tests to be done are overwhelming, and due to my lack of finances, I am going to do everything I can on my own first. It is also extremely hard to find clinicians who are at all aware of these issues. I can’t reiterate enough how insulting and hopeless it feels to be told by doctors that a person who is physically suffering so much is simply depressed and needs talk therapy. (It is actually NOT helpful to verbally repeat the trauma that has happened to you in the past… This only serves to prolong the cycle of suffering… But that is a topic for another day!)

I have now completed 21 days of this diet, and I am very proud of how well I am doing with it! I do not miss coffee (or chocolate for the most part!) and I do not feel deprived (the key to a lifelong diet)! When I do start to crave foods that I am not allowed to have, I tell myself to settle down, settle down. Usually they dissipate. One major caveat to this type of diet is that you must always stay close to home (at this point, I don’t even have the option for anything else!). I dropped 5 of my extra 10 pounds that I have put on over the course of this last year (yesterday marked the day that my knee fully gave out one year ago) in the first 17 days and am now holding steady. The other five will have to wait until the inflammation in my body subsides (this takes a LONG time) and until I have the ability to work out again. I’ve already noticed an improvement in the inflammation in my brain (if left unchecked, the disease will change the myelin sheath surrounding the brain and progress to early dementia…). I am starting to think more clearly, remember things, and I have finally read my first book in a very long time! (I think this is only the second one I have read this year!). It was “Chronic Fatigue Syndrome: The Hidden Epidemic”, which was excellent, just as my friend had said. I highly recommend it for everyone to read. (It is not being published anymore, but you can still buy it used). It not only helps one understand what it is like to have this condition and how to go about healing it, but it offers great advice for everyone on how to prevent such a disease from happening in the first place. As time goes on, I fully believe that more and more people will struggle with autoimmune diseases due to the poisoning of our food system, and the amount of stress we carry in our lives.
Although this book was published in 1992, the authors fully knew then, as many clinicians are discovering today, that diet and supplements are only ONE part of the healing process. All disease is really an opportunity to examine one’ beliefs about life and make changes that will last a lifetime. It also allows one to examine the stress issues that led to the disease. Changing patterns in the subconscious mind is really the root of healing. Often, people who suffer from autoimmune diseases find it hard to love and forgive themselves. I feel that I have a strong intellectual grasp on what I need to do to heal (and have had so for a long time), but as of yet, I have not been able to actually make the deep changes that I need to. Over the course of these next few months and years, I must undertake the hard work of changing my subconscious beliefs about myself and about the world. Before one can heal their illness, they must first heal their life. This is the journey that I am about to embark on.

Chronic Fatigue Syndrome

I have been in the depths of Chronic Fatigue Syndrome for the past four months (and can now see that it started to make its appearance in April when my thryroid started malfunctioning). In July and August, I was sleeping up to 19 hours per day. I could feel that my adrenals were completely depleted and I thought my life was over. I didn’t want to live in that condition. I couldn’t even respond to e-mails. I would see that someone had written me, and felt the normal feeling of needing to respond, yet my body and brain were paralyzed. It felt as though I was reaching out my hand, but couldn’t make contact. Or that I was opening my mouth, but couldn’t speak. I was so tired that I could not say the word “hello” to someone passing by me. I could barely make it to the grocery store. Living with this disease is like having a shade attached to the top of your head which is always drawn down to your ankles. My head constantly hurt and the few hours that I was awake, I lived in a haze, unable to do anything but watch TV. By September, I realized that I was suffering from Chronic Fatigue Syndrome, in which no amount of sleep replenishes you, and any energy expended further depletes you. I was very fortunate to have a fellow long distance hiker write to me about her experience with the disease. She wrote me one of the best e-mails I have ever received. She told me about the epiphanies she received during this time, gave me the name of the best book written on the subject, suggested I be open to my own miracles happening, and urged me to not attempt to do any exercise (even walking or stretching) for a full six months, among many other things. She also told me that I will never be cured of this illness, although it is possible to put in into remission.
By the middle of the month, I learned that there is a strong link between Leaky Gut (holes in the intestines) and Chronic Fatigue Syndrome! This was precisely what had happened to me! Food leaks through these holes and travels into the bloodstream. These toxins illicit an immune response and create inflammation throughout the body. This inflammation then starts to shut the other organs of the body down. My thyroid and adrenal glands had already been clearly affected. The liver and kidney, and other organs are also at high risk. This systemic inflammation also primes the body for a host of other autoimmune diseases, as well as cancer. Prior to my discovery, both my primary care physician and endocrinologist refused to test me properly for thyroid or adrenal function. I was at my wit’s end, being actively turned away from help. didn’t know what I was supposed to do. But this discovery gave me understanding of what was happening in my body, and steps to start taking to address the root cause. Through serious and very diligent dietary work, I learned that it was possible for some healing to occur within a time frame of 9 months to two years (with the ever present possibility of it returning- especially when not being extremely attentive to what one is eating). I knew that I needed to incorporate kimchi, kefir, and bone broth into my diet on a daily basis, and eliminate all sugar, dairy, and gluten.

I started to eat the kimchi and make smoothies with kefir on a nearly daily basis beginning sometime in September, and by the end of the month, I started incorporating bone broth into my diet. After this last introduction, my intestines became very painful again- a response that surprised me. I decided to take a day off and then only drink 8 ounces per day. The pain began to subside as time went on.

After discovering a wonderful website by a nutritionist named Jessica Flanigan, I realized that I was not going to have a chance at healing unless I eliminated ALL foods that cause an inflammatory response. Because I now have an autoimmune disease on top of Leaky Gut, I needed to eliminate even more foods: Coffee, sugar, all grains, all dairy (including yogurt), eggs, nuts (including almond milk), seeds, all beans (including miso and soy), alcohol, tomatoes, peppers, chili, etc, etc. I read that 95% is not doing the diet. And I got very sad. The initial elimination period lasts from 2-3 months, after which you are allowed to add back in a single item every five days and see how your body reacts. Most people with an autoimmune disorder have to stay on a highly restricted diet for the rest of their lives. Those who suffer from Leaky Gut are in the same situation. The lack of good bacteria and the intestinal holes this produces cause an array of food allergies in the body. I also have been learning that not all those who follow strict diet and supplement plans heal (even after years). There is clearly another piece to these illnesses that represents a more spiritual aspect. This is a topic that I am very fascinated by and will be writing a lot about in the coming months.

I took a weekend to gather my strength and began my very restricted diet on October 19th. Prior to this start, I would often tell myself that I do not even want to live if I can’t have coffee or chocolate. I felt like those were the two things in my life that gave me the most pleasure and I couldn’t see how it was possible to be alive without them. I also thought about my 2 week attempts at no carb diets 10 years ago and how impossible it became to do that sequential times. I didn’t FEEL good. Every body is different and requires different foods. I started to reason with myself that I needed sugar and coffee and that without those things, I wouldn’t have enough energy. But then I thought… My energy can’t get any lower than it is now, and since I can’t move or even stay awake for many hours, I really don’t have anything to worry about. I just had to come to terms with no longer receiving any pleasure from food. It was now purely functional.

And so, Monday morning, I had my first cup of tea, and made my first cold smoothie on a very cold morning (another reason I thought I couldn’t do this…). This is now my only choice for breakfast. I had a raging headache that afternoon and evening, but i got through it (NSAIDS are also off the list). I have now successfully completed day 12. I have learned that when presented with a life or death situation, it is easier to do something very hard and restrictive than when you are merely trying to lose some extra pounds.
I also FINALLY started meditating one week ago. Every night, I have sat for 15-25 minutes! The funniest thing is, after all of that resistance of getting off the couch and moving to the floor, I quickly discovered that I LOVE being in that protective space where nothing can touch me! The ego mind will do everything it can to keep you from doing those things that are best for you! And lastly, I have officially started my study of “A Course in Miracles”!

This path to healing is likely going to be a long one. Most people stay in the acute phase for at least a year. Others spend 8 years, or 20 years, or even a lifetime in it. The famous Buddhist nun, meditator, author, and speaker Pema Chodron has had it for the last 20 years. Currently, I am sleeping an average of 14 hours per day (after 12 hours of sleep, I get up, stay awake for about 4-5 hours, take a 2 hour nap, then stay up for another 4-5 hours- mostly sitting still, watching TV or listening to podcasts). On harder days, I sleep at least 16 hours. My body still has no ability to recover, which is one of the hardest things about this illness (Goodbye hiking!!). When I do more than sit all day, I have to sleep at least 14 (sometimes 16)  hours overnight. My body feels like a cement block and most of the time, I can not even open my eyes. In the last 4 months, I have not been able to sleep less than 12 hours per night. I have only had to give my talk 5 times in the last 3 months, but I couldn’t have done any more than that. My brain started to become impaired and I was losing my memory. And each talk would wipe me out for up to a week afterwards. Another hard aspect of this illness is its invisibility. People who see me on a rare occasion don’t see me as a sick person. They have no idea what my daily experience is like. If I were on crutches or in a cast, some people might extend more sympathy, but no one knows what I am and have been going through. They also can’t comprehend what the experience is like having never gone through it before. I did meet one woman who came to my talk this Tuesday who told me she had suffered from it. She said those were the worst months of her life. She had a constant, very painful headache for 4 months, felt that she was a burden on her family, and wanted to end her life. This is an extremely difficult prolonged experience. No one asks for a chronic illness. It robs you of your life. But I am excited to dive into a deep period of learning and healing and see what arises if I manage to break through to the other side!

I look forward to sharing my experience with you!

Thank you for following.
And thank you for your patience!

I Figured it Out!

I realized all by my little self this week that the Chronic Fatigue Syndrome that I have been experiencing, as well as all of my other health problems over the past 2+ years all stem from my intestinal problems. Two years and four months ago, while I was deep in the Sierra Mountains and hiking at altitudes of 11,000-14,500 feet with giardia, I accepted two antibiotic pills from a fellow thruhiker. He was a nurse and carrying the pills in case he got infected, himself. I was very surprised that he said it was a single dose, but took his word for it. Those two pills (and the two more he gave me two days later) ended up obliterating my gut. Because most of the “good”, necessary bacteria in my system was killed off, I got infected by an even worse bacterial infection that I had never heard of before (C. Dif). I continued hiking on the belief that my body would be able to overcome this infection on its own. (Additionally, I had no health insurance, have had a very poor history with doctors, did not want anything more to do with any type of antibiotic, and didn’t believe I had time to get off the trail, find a doctor, get this all taken care of, and still make it to Canada). On a biological and rational level, it made no sense that I was able to hike well over twenty miles per day when I could not eat enough calories due to the extreme pain eating caused me, as well as the constant loss of nutrients from my body. But for the next four months, I did.
I thought that resting at home would finally help me heal. It did not. Neither did taking every probiotic imaginable. For more than a year after returning home, I suffered from crippling stomach pain and several other symptoms that I don’t particularly care to write about. By the fall of 2014, I did some research on my own and discovered that I had “Leaky Gut Syndrome” which means that, due to the imbalance of bacteria in my gut, which I was not able to correct, my intestines were full of large tears. Every toxin that entered my body in the form of sugar, dairy, or gluten, (as well as large food particles in general) was now leaking into my bloodstream and affecting the organs of my body. It first attacked my skin. For the past two years, there hasn’t been a day where I felt comfortable being seen in public or in which I would be okay with having my picture taken. From the articles I read, I learned that I both needed to stop ingesting any of these types of foods, and instead eating such things as bone broth, kimchi, and kefir. I tried finding bone broth at Whole Foods, but they did not sell it. The other foods sounded too disgusting to even try. I was not ready for them at that time. I did manage to eliminate gluten (for the most part) in my diet. I also started taking L-Glutamine and Quercetin supplements to help my intestines seal back up. (When I learned that both eggs and nuts were off the list for those suffering with an autoimmune disorder, I wanted to give up. How can I only eat meat and vegetables? I personally can not). At the same time, I was dealing with the pain of my torn meniscus and subsequent surgery. I did notice that my stomach pain became less frequent over the course of the next year (down to a few days per month) and I detected other signs that my intestines were starting to heal, but I knew they had a long way to go.
In April, my next big health problem began, which terrified me. I went to see a doctor with a very open mind. I knew I needed help. Unfortunately, my experiences over the next 5 months only reinforced my opinion of doctors. I was not met with a sense of understanding and was given no help at all. Several times, I was flat out refused when I asked for a simple (and very cheap) blood test.
Starting in May and solidifying in July, I have been experiencing the most profound and prolonged type of fatigue I have ever experienced in my life. I have been essentially bed-ridden and not functional on any level and any time I exert any energy at all, I get a backlash from it in the following days. Normal laws of “exercise is good for you” do not apply to people suffering from this syndrome. Exercise for those who have Chronic Fatigue Syndrome is actually harmful. It depletes your body even further. I somehow managed to give my talk two times in the last two months. Both times, I did not think I could do it. Each of them required over four hours of driving. The following day, I was in a near black-out state in which I could do nothing. The following several days, I remained extremely weak.

This week, I realized that Chronic Fatigue Syndrome is one of the conditions that can stem from Leaky Gut, along with a host of other autoimmune diseases. The body begins to attack itself. Thyroid problems and adrenal depletion are also common. Over time, I have been getting more and more sick. Now, I realize that I MUST seal my intestines in order to have a chance at regaining any of my health. The source of all of my sicknesses over the past two years is my gut. (My second GYN didn’t know what was causing the prolonged heavy bleeding. I now think it was related to my gut, which was affecting my thyroid). The most essential food that I need is bone broth. I finally found a company that I can buy from that will ship it on dry ice. Two weeks ago, I started including kimchi and kefir in my diet. I now have a bit of hope that my health can return to at least a semi-functional state in the coming months- years. If I am strict about my food intake (which seems impossible for a girl who could live off chocolate alone), I might see improvement in 6 months.
I think that it is INSANE that despite telling EVERY doctor I saw my health history over the past two years and four months (I always start with the giardia, then C. Dif and always say that I am still not healed), they don’t even THINK about the possibility of Leaky Gut and all of its ramifications. Instead, they break down every symptom (you have bad skin, you need to see a dermatologist, you need to see a breast surgeon, you need to see a GI specialist for a colonoscopy (because cancer is the ONLY thing we can detect in your intestines), you need to see a GYN, you need to see a cognitive behavioral therapist for depression….). It is 2015 and they STILL somehow do not understand that everything in the body is connected!! Good lord!! Who has the time and energy to go to all those different types of doctors? (Certainly not a person with Chronic Fatigue Syndrome, I can tell you that!) And for what? You can’t try to treat each symptom alone, or perform a blood test for a specific antigen that tells them “I’m fine” (when I am clearly not!) and expect to fix the actual problem! And how is it possible that that they don’t know the connection between the gut and the brain (and mood), or the gut and the skin? I knew that my skin problems were a direct result of my intestinal issues and have told the doctors that. That connection is what lead me to discover my own Leaky Gut diagnosis. And a simple google search lists article after article that confirm the relationship between Leaky Gut and Chronic Fatigue Syndrome.

Had I know about the severity of what I was infected with and the near impossibility of restoring the diversity and numbers of gut bacteria back in June of 2013, I would have gotten this treatment:
http://fox4kc.com/2015/08/27/man-with-almost-perfect-poop-donates-it-to-help-patients-with-c-diff-infection/
I don’t know if it was available back then (or in the area of the country I was in), but now I understand that this is what I needed at the time. I have spent far more money in these past two years on numerous probiotics, vitamins, acupuncture appointments, a visit to a homeopath (who actually took the time to listen to me and take into account my lifetime history, but still ended up giving me pills for specific symptoms, which had no effect at all in the end).
Instead, I am on the slow path to recovery in which progress will be measured in years. I do feel a bit of relief that I have found the source of all of my maladies as well as confirmation that what I have been feeling is real. I knew the source of my fatigue was coming from a physical level, and now I know that the source is my hole-filled intestines.