"Each patient carries his own doctor inside him." ―Norman Cousins, Anatomy of an Illness
Content Warning: This post discusses blood and menstrual-related problems. If you know me personally, and you're going to make it awkward next time we see each other, you may want to skip reading this one.
My whole life, I’ve always had to learn things the hard way. So, when it came to my own medical problems, obviously, again I took the hardest route. Rather than taking to the Internet and simply Googling symptoms, or asking forums or Reddit for suggestions, instead I painstakingly read medical journals, year after year after year — until one day, I stumbled across Dysautonomia, which led me to Ehlers-Danlos Syndrome (EDS), and Mast Cell Activation Syndrome (MCAS) followed. After being diagnosed, in September 2017, with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a neuromuscular autoimmune disease, when I decided to change my diet, rather than find books that already existed and ask questions online, or simply take advantage of research that had already been compiled by others, instead, again, I made things difficult.
I’m not sure if this need of mine to make everything more complicated is simply the way I learn best or if I need to confirm for myself that the way I’m doing things is the right way for me, but it’s probably a little of both. I started first by eliminating gluten, eggs, soy, and all highly processed foods, and if something had more than five ingredients, or any ingredients I didn’t recognize, I didn’t buy it. These moves were a great start, but even after a year of eating in this manner, I didn’t notice much of a difference, with the exception being that my neuropathy and erythromelalgia in my feet were especially triggered by gluten. For the most part, I was vegetarian, though I would occasionally eat meat. I already didn’t eat casein (dairy protein), as I’ve been allergic to it since birth. My allergist told me I’d “grown out of it,” around age fifteen, but I’d determined his assessment might have not been so accurate.
In January 2018, I enrolled in a human nutrition class, and it didn’t take long before I started noticing serious flaws in the “healthy” nutrition guidelines provided by the USDA, which govern most formalized dietary educational training. For one, some of the largest portions of food recommended come from whole and refined grains and starchy vegetables – all of which the body treats as carbohydrates. I wondered, are these groups of food really necessary to be consuming in copious amounts? There is no reasonable explanation for carbohydrates to constitute 45-65% of our total calorie intake. It seemed counterintuitive, as carbohydrates are what the body uses for short-term energy, and shouldn’t we be more interested in long-term energy? Don’t get me wrong, I love carbs. I always have … and maybe that was part of the problem. If you had asked me growing up what was my favorite food, the answer, other than green beans, absolutely would have been bread. I started questioning if my cravings for carbs and love of starchy foods weren’t indicators that something (else) was wrong. Perhaps the bad bacteria in my gut were calling out for me to feed them these foods, and had I been encouraging the development of gut dysbiosis?
I then read Wheat Belly and Undoctored, both by Dr. William Davis, and while there is no such thing as a deficiency that results from not eating grains, the U.S. government has declared grains to be an entire food group that is necessary to ingest daily. Yet, dietary fat, which is essential to the body’s functioning, is not mentioned in the USDA’s dietary recommendations. The American Society for Nutrition also claims, “whole grains are a key component of a healthy diet” (The Healthgrain Forum, 2017), except this information is not true – grains are neither key, nor required. Fiber can be obtained without eating grains, and, as Time reported, it is questionable that the fiber being added to whole grains has the same functionality as naturally occurring fiber (Park, 2017). Fiber is a type of carbohydrate that our bodies do not absorb and is not digested, and it helps to regulate hunger and blood sugar (The Nutrition Source, n.d.). Fiber is often overlooked in terms of importance, but according to The New York Times, eating a high fiber diet “reduces the risk of developing diabetes, heart disease, and arthritis,” and lowers the overall mortality rate (Zimmer, 2018). Researchers have discovered that the fiber from our diets helps to feed the good bacteria in our gastrointestinal tract, which helps to regulate our bodies, including our immune systems, which means that fiber is likely incredibly important in maintaining the integrity of the intestinal wall – thereby reducing the risk of leaky gut and autoimmunity (Kashef, 2018; Mu et al., 2017; Zimmer, 2018). Diets low in fiber alter the diversity of the microbiome, which can lead to chronic inflammation and disease (Zimmer, 2018). Further, the Whole Grain Council tells the public that “fresh corn” is a vegetable, and “dried corn” is a grain, but corn is still a grain (Whole Grains Council, n.d.). Corn doesn’t magically change food groups simply because it is fresh or dried (van der Kamp, Poutanen, Seal, & Richardson, 2014). Grains contain what de Punder and Pruimboom (2013) refer to as “anti-nutrients,” including wheat gluten and wheat lectin, which “in humans can elicit dysfunction and disease,” and contribute to chronicity of both inflammation and disease due to increasing “intestinal permeability and initiating a pro-inflammatory immune response.” Leaky gut is a driver in all autoimmune disease (Kashef, 2018; Mu et al., 2017; Richards et al., 2016; Wentz, 2013). Wheat proteins also degrade into opioid-like peptides called exorphins, which bind to the body's opioid receptors (yes, those same opioid receptors), and rather than make you high like opioid drugs, they actually make you hungry, over and over again (Davis, 2011; Pruimboom & de Punder, 2015). Wheat additionally increases your blood sugar more than table sugar, and the post-eating insulin increase produced by wheat ingestion can be neutralized by naloxone, the same opioid antagonist given in opioid overdoses (Davis, 2011; Pruimboom & de Punder, 2015). Bread really is as addictive as we think it is.
In 2015, the same year the most recent USDA Dietary Guidelines for Americans were released, Time published an article stating that when we began cutting fat out of our diets, and recommended everyone eat low and non-fat foods (as the USDA still recommends, to this day), we replaced fats with carbohydrates, which are broken down into sugars and a different form of fats, triglycerides, which do more harm than cholesterol from animal products (Park, 2015; U.S. Department of Health and Human Services, 2015). A recent study also documented that “higher-carbohydrate diets have adverse effects on long-term survival” and cardiovascular health, and, in contrast, “higher-fat diets improved outcomes” (O’Keefe, DiNicolantonio, Sigurdsson, & Ros, 2018). Lowering fat intake, by following a low-fat diet, has also been shown, in a nine-year study, to have “absolutely no effect on improving health outcomes” (O’Keefe, DiNicolantonio, Sigurdsson, & Ros, 2018). A diet high in added fat (mostly unsaturated), however, “found a highly significant reduction” in disease, with "a 30% decrease in the composite end point of myocardial infarction, stroke, and cardiovascular (CV) death” (O’Keefe, DiNicolantonio, Sigurdsson, & Ros, 2018). A study out of Harvard also found that diets high in monounsaturated and polyunsaturated fats, substituted in place of carbohydrates, significantly reduced mortality, and Mayo Clinic recommends that “excess carbohydrate calories should be replaced by foods naturally rich in unsaturated fats” (O’Keefe, DiNicolantonio, Sigurdsson, & Ros, 2018). Still wanting to eat those "healthy" whole grains?
The more I read about nutrition and autoimmune disease, too, and especially with regard to repairing the myelin sheath (the protective covering around the nerves that is under attack in CIDP), increasingly I realized how essential dietary fat and cholesterol were to healing (Berghoff et al., 2017). The brain is approximately sixty percent fat, and the myelin sheath is seventy percent lipids, both of which are highly dependent on nutritional fatty acids (Chang, Ke, & Chen, 2009). Dietary fatty acids, therefore, are essential in the maintenance, health, growth, and repair of the myelin sheath. I have long had problems, too, with blood sugar swings and issues with my body giving me confusing signals regarding hunger and satiety, and I was slowly starting to wonder if I didn’t have some level of insulin resistance going on as well. I decided to eliminate all grains, including corn, and added sugars, starchy vegetables, legumes, and nightshades, and I restructured my diet to contain healthy fats as the largest percentage, starting with reintroducing meat, and I began eating primarily low glycemic foods. For fruits, I focused on berries, and while I love apples, I now only have one occasionally and predominately eat blueberries, raspberries, cherries, and acai. Given insulin resistance is known to play a role in acne and inflammatory skin conditions, such as eczema, my hope was these changes would additionally help these conditions, too (Emiroğlu, Cengiz, & Kemeriz, 2015).
Around this same time, I read Period Repair Manual, by Dr. Lara Briden, and subsequently cut caffeine, purchased multiple herbal supplements to address leaky gut and small intestinal bacterial overgrowth (SIBO), and had my Mirena IUD removed. Since age 11, I’ve had horrific, nightmare-worthy menstrual periods and have had a persistent ferritin deficiency (latent iron deficiency, a.k.a. iron deficiency without anemia). I bleed for such long lengths of time, at such a high frequency, and with such large volume that a hematologist diagnosed me “coagulation disorder, unspecified,” meaning, she has a bleeding disorder, but I can’t figure out which one. Essentially, I had been led to believe that my bleeding problems could only be helped by (synthetic) hormonal birth control and/or an antifibrinolytic medication known as Lysteda. Dr. Briden’s book made me question these so-called “facts” that had been fed to me by western medicine. By the point at which I read this book, I had been seriously considering getting a hysterectomy. However, I have never done well with surgery or anesthesia, and I had deep concerns regarding the issue of how removing an organ may alter my structural anatomy, to the point that more new problems may be created than old problems solved. I’ve always been an incredibly cautious person. There are few actions I’ve taken in life about which I haven’t taken a long, drawn out time in advance to ruminate. I could probably count my spontaneous decisions on one hand. I like to fully understand any and all choices before acting on any decision, and while my methods may be time-consuming and exhausting, overall, they’ve served me well. Reading this book only reinforced my methods, as I came up with no less than six possible contributors to my periods from hell. I also realized that while I had perceived all the bleeding and pain as my body trying to torture me, it seemed entirely plausible that instead, my body was trying to tell me something, and we simply didn’t speak the same language. I decided to stop living in fear of my own body, so I called to schedule to have the IUD removed, I ordered a natural (bioidential) progesterone cream from Amazon, and I already had three supplements, Evening Primrose Oil, Vitex agnus-castus (chasteberry), and DIM, all of which I started taking religiously. I’ll write more later in depth about this experience and about what I learned regarding synthetic hormones, none of it positive, but I’ve already spent enough time talking about blood and food within the same post.
At this point, early March 2018, I was primarily eating a paleo diet, yet I wasn’t eating nightshades, which is an aspect of autoimmune paleo, but I was still eating nuts and seeds, including cacoa, which are prohibited within autoimmune paleo. Both paleo and autoimmune paleo, however, do allow the starchy vegetables I was avoiding, but the ketogenic diet does not. The ketogenic diet, though, permits eggs, dairy, and nightshades, which I wasn’t eating, along with nuts and seeds, which I was eating. I was also restricting my total calories and exercising five to six times a week. Short-term calorie restriction, defined as “receiving fewer calories while maintaining adequate essential nutrients,” has also been demonstrated to enhance “the recovery from injury in several tissues including skeletal muscle and small intestine,” to repair damaged cells, and to promote myelin regeneration (Knapton, 2016; Yousefi et al., 2018), all of which I needed. I was starting to conclude that perhaps my diet didn’t need to have a name. I had no idea how to refer to it, but it existed just the same. With more research though, I discovered my particular diet did, in fact, already have a name, The Wahls Protocol, by Dr. Terry Wahls, who has Multiple Sclerosis, which is a strikingly similar autoimmune disorder to CIDP. I suppose, per usual, I could’ve saved myself a lot of time by simply using Google and seeing what books and dietary plans were already out there regarding nutrition and autoimmune disease, but if I had gone about it in that manner, I think I would’ve been less likely to stick to any one specific diet, because I wouldn’t have completely understood why I was making these particular choices.
These types of diets appear, to the average person, to be incredibly limiting, but are they worth it? Yes. Personally, I highly enjoy not feeling like total crap day in and day out. Thus far, I have stopped four prescription medications, my Raynaud’s, eczema, and keratosis pilaris (colloquially known as “chicken skin”) have improved, and my menstrual periods have gone from twenty-one days of bleeding (every month — yes, that’s not an exaggeration) to a grand total of five days, with the volume of blood cut in half from the first month to the second month (my prior periods were at least five times heavier, if not worse). So much for that alleged bleeding disorder. Within three days of cutting starchy foods and grains, and adhering to low glycemic options, I achieved a level of mental clarity that I didn't know existed — I hadn’t even realized that I had brain fog (carb fog, as I now refer to it; you might also know it as Grain Brain). I am able to go much longer than my previous two to three hours between meals, without getting shaky and nauseated, and for the first time in twenty years, I no longer have a ferritin deficiency. I can also, once again, fit into my favorite pair of jeans. My hormonal acne stopped immediately upon having my IUD removed, and the rest of my acne has improved to the point that I’ve been able to cut back on using my two topical medications. My hair is growing back, and I’m no longer shedding massive amounts every time I shower. The amount of sleep I require has reduced from twelve to fourteen hours daily to eight to nine hours, and my delayed sleep phase disorder (essentially my circadian rhythm) has shifted more towards what’s considered “normal” people hours (a.k.a. me not going to sleep around 3:00 or 4:00 AM).
In two months time, I have solved problems for myself, in which conventional medicine, over the course of decades, never made so much as a dent. I’d go as far as to say that some of the traditional treatments I have been given actually did quite a lot of harm to my body and contributed to the development of my current medical problems. The most fundamental aspect of all of these improvements, however, began with my willingness to question everything I’ve ever been told and everyone I’ve ever been taught to respect as “authority.” If I had a life motto, it would be to question everything, and the more resistance you receive about something or someone being questioned, the more ruthlessly those questions need be pursued. Without my willingness to be “defiant,” as I’ve been called, towards authority, I guarantee I’d still have no diagnoses, no answers, no treatments, and I likely wouldn’t even still be able to walk or use my hands and arms. I am not saying that I am cured, nor do I think I ever will be – this battle will be life-long. But, not only do I now have answers and diagnoses, which are incredibly important, I have also gained some semblance of control, which is something, with regard to my body, I can’t say I’ve ever had.
Food. Real food. All along, it was as simple, and as complicated, as that.
"The food you eat can be either the safest and most powerful form of medicine or the slowest form of poison." ―Ann Wigmore
Have you made dietary changes that have significantly helped you? Let me know in the comments!
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