Why I'm Here
And How Diet, Exercise, and Wellness Advice is Great, Unless it Isn't
I've always taken good care of myself and the people I love. But despite my efforts and a lot of medical advice, health problems crept up on me and persisted, new symptoms piled on over the years, and nothing seemed to help. I pushed on and looked fairly well, but was barely able to keep moving with chronic migraines, serious GI ailments, persistent infections, MCS, untreatable pain and fatigue, anxiety, depression, insomnia and a host of mystery symptoms and ailments that came and went for inexplicable reasons. And meanwhile, my children were developing serious symptoms and conditions at even earlier ages.
Western medicine saved us all during crises but was little to no help for understanding or addressing, much less turning around, most of what ailed us. It was life altering, and I had to find a way out of it.
Our first turn for the better came in 2005 when I finally figured out that we are indeed among the millions with non-celiac gluten sensitivity. I went on a basic gluten-free diet and 48 hours later was shocked to wake up without the usual blinding pain in my head and neck or the heart-racing, flashing brain spin of morning anxiety. Just quiet, calm, and painless. This was definitely for me! Then I just had to work on getting everyone else in my family to do the same. They did, and everyone had different experiences. But we all improved in small and dramatic ways. Then we found the Integrated Medicine Program at KU Med in Kansas City and the naturopathic practice, Natural Medical Care, in Lawrence, KS, and we continued moving step by step in the right direction.
But over time certain ailments persisted or worsened. Chronic infections, immune overreaction, insomnia, mood fluctuations, fatigue, anxiety, and other things stuck with one or another of us and became life altering. I’m a bird-framed 5’3” and at my sickest was a tired, 99-lb person looking at identifiable food items floating around in the toilet (sorry). After a few years on a basic gluten-free diet I weighed 139 lbs and had developed the shape of some sort of root vegetable (maybe a turnip) despite being a runner and a regular practitioner of Bikram yoga (both of which I really struggled at). I felt leaden, tired and miserable—was marching into metabolic disorder, suffering daily from reactive hypoglycemia, and having more headaches and increasing pain in my joints, soft tissues, and GI tract. And none of it was responding to treatments that had helped in the past.
So a couple of us went grain free in 2011 and cut out most of the remaining processed foods and simple carbohydrates in our diets and again we experienced significant improvements. My glucose metabolism totally transformed within four months. I stepped off the roller coaster of craving and crashing and yeast overgrowth, lost the belly fat while hardly trying, and regained the energy and well being I had lost.
While I observed us and others, I said All. The. Time, “that’s actually not normal, that’s a symptom.” So much of what ails us starts early and progresses slowly, and people accept and cope with, or don't recognize, a LOT. Or think it's normal—even when it alters their lives. But as attentive as I’d been to how I was feeling and functioning, I had not recognized symptoms of my own. After going grain free I could actually breathe better. I recovered from exertion rather than feeling like I'd been trampled by goats. I could run more easily, and longer (in my 50s) than ever before.
Our physical and mental health continued to improve. But each of us still had one thing or another that was episodic and sometimes debilitating. I pressed our naturopath to help me figure it out and he called one day and said, “Look up MTHFR. You’ll see what I mean.”
I did, and holy cow! Everybody in the family did genetic testing and we all have one or two copies of one or both of the main MTHFR (folate cycle enzyme) variants, plus medium-sized lists of the lesser, associated variants, all of which contribute in complex ways to our biochemistry and make us who we are, how we feel, and what we suffer from.
We explored our genome results via Promethease / SNPedia and other Online analytical tools; waded into the world of nutritional genomics; sifted through individualized treatment recommendations via Yasko and other protocols; and poked around forums frequented by people ahead of us, participating in patient-driven research, and sharing what they've learned and how their treatments and habit changes are working. It is massively fascinating, helpful, and completely overwhelming. I had to stop and look up basic vocabulary. And I sometimes just pushed myself away from the computer and went outside for a spell.
We talked to a geneticist at KU Med and discussed it with our naturopath and family doctor. We started to understand how these common, underlying metabolic variants have been clunking along, laying the groundwork for what, over time, develops into much of what we call chronic illness. We could look back and identify signs, symptoms, and triggering events, and see more clearly the early, missed stages of what is often only diagnosed much later when it becomes severe. We could finally see how and why even immediate family members can have overlapping and yet very different symptoms and ailments, and why each may respond nicely, not at all, or very badly to the same, simple nutritional supplement. Genetic testing explains . . . a lot.
Unknowingly, we had been following a good part of the basic MTHFR protocol, and when we took the additional step of individualized supplementation we improved further. Pretty much slowing or turning around issues that had continued to plague us—even things that typically progress and can have dire prognoses.
Being early adopters of the approaches we took, our turnarounds surprised our family doctor at many steps along the way. The bulk of MTHFR literature was generated in the last 10-15 years so it was new to her and the lab tech and most others we've seen since. Of the doctors we've all talked to, some know a lot, some a little, some dismiss it outright (though there is a consensus among medical researchers and geneticists as to the metabolic malfunctions and treatment possibilities), and many have never heard of it at all. This is why individuals do their own research.
I may have been sicker, starting earlier than some of my peers, but my children, sadly, are not that atypical among theirs. In the last few decades, chronic illness has been starting earlier, becoming more severe, and altering and shortening the lives of larger numbers of people. Only recently have scientists gained a better understanding of how genetic predispositions, event and exposure triggers, diet and other lifestyle habits impact our health — and from that come exciting and effective protocols for slowing or turning around previously “untreatable” disease processes.
And while too few answers were available in the past, now the sea of Information and recommendations about health, diet, and exercise is vast and deep, and presented in simplistic and mind boggling levels. Some of it is out of date, and mainstream stalwarts still push blanket DO’s and DON'T's that may help one segment of the population but are of no use or actually harmful to others. Individualized medicine is coming—and coaching and community health will be an essential part of it.
My mission is to help people navigate it all and become informed decision makers and advocates for themselves and their families. My goal is to help people suffer LESS than we did, by providing shortcuts and pointing toward information and resources that make it easier to take the right steps to better health. Starting right where you are.
My family members and I are still dealing with some issues, but we’re on the right path. We shudder at the thought of where we would be had we followed the standard advice of the day rather than do the work toward wellness that we chose. And we’re living proof that you can feel better. It should be easier. Until it is, we need to help each other along.
Warm wishes to you and yours. And feel better!
6/2018 UPDATE: Learning new things, making changes, and undergoing a bit of new treatment thanks to some cutting edge care here in Lawrence, KS. Feeling EVEN better, stronger, calmer, and happier more of the time!
Christy Kennedy is a mother of four, health coach, writer, editor, and former wildlife rehabilitator living in Lawrence, KS, with her husband, dogs, chickens, and 20-year-old cat.
Health and Wellness Coaches partner with clients seeking self-directed, lasting changes, aligned with their values, which promote health and wellness and, thereby, enhance well-being. In the course of their work health and wellness coaches display unconditional positive regard for their clients and a belief in their capacity for change, and honoring that each client is an expert on his or her life, while ensuring that all interactions are respectful and non-judgmental.
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