My name is Steven, and I created this website to tell you about my recovery from Ankylosing Spondylitis (AS).
My back first hurt in early 2009. The pain was mild; I didn’t think much about it. Later I made the link that this pain began after getting terribly sick twice in a few months–once from drinking bad water, and once from starting a job in a physically toxic environment. It’s likely then that my onset of AS was triggered by either a bad bug or the fighting off of it.
Over the next three years the pain got a lot worse. It spread from my back to my ribs, neck, hips, and the back of my legs. Not knowing what was happening, I saw everyone: doctors, osteopaths, acupuncturists, chiropractors, herbalists, naturopaths, physical therapists…
AS is in my family, but early on a doctor ruled it out because x-rays didn’t show bone fusion. Now I know fusion sometimes takes years to see on an x-ray, but back then I concluded AS simply wasn’t my problem.
In 2011, I started taking prescribed anti-inflammatory drugs (NSAIDs). They certainly made me feel better! After a few months, however, my stomach hurt so bad I had to quit. Ulcers–a relatively common side effect. Without the drugs, my pain became unbearable. I lost sleep all the time. Basic tasks, like turning my head while driving, became harder and harder. I felt overtaken.
Finally, in early 2012, a new nurse reconsidered AS as the culprit. She tested me for the HLA-B27 gene, which is rare in the general population but found in people with AS 95% of the time. I came up positive. Alongside a history of AS in my family and all the classic symptoms, this diagnosis was solid. I was relieved to finally know what was wrong, yet completely hopeless. For one, I had no way to take away the pain since NSAIDs gave me ulcers. “Biologic” medicines that suppress the immune system were suggested, but the cost and risk were way too high, plus a family member contracted another autoimmune disease while trying them, and my job that I loved had me working at a community center where I would’ve been dangerously exposed. Perhaps worse than the physical pain, I felt traumatized by the idea that my body was “invaded” and would continue to deteriorate. A lifetime of AS is a scary prognosis.
So I searched. Online I found KickAS, which includes stories from people who find relief through a No Starch Diet (NSD). I learned that a doctor named Alan Ebringer had studied whether AS was a problem with immunity and gut bacteria, and that his solution for AS patients–starve out a gut bacteria called klebsiella by cutting out starches–reduced pain for some people in his trials. The next day, in January 2012, I cut out all starches from my diet.
But what then could I eat? A book called The IBS Low-Starch Diet by an author with AS proved a helpful starting point both to learn about starches and to learn how to cook without them. I learned that iodine will turn black on starchy foods, so I got a bottle of it and doused everything I put into my body–foods, drinks, supplements, medicines–to make sure nothing had any starch. I kept a food journal, and tried to make correlations between pain and food.
In just a few days my pain levels dropped dramatically. In fact, six months after the day I quit starch, an inflammatory marker in my body (crp) had decreased an astounding fifteen-fold. My body grew fitter, my emotions more stable, my thinking became clearer. This diet was good stuff.
But I wanted no pain. Any AS pain indicated to me that the bone-fusion process was at work, and I was not willing to give up my outdoorsy life for it. Following the mantra, “Use it or Fuse it”, I got busy exercising all the time. It helped, but still the pain was present in low doses.
Three months into the diet a new problem emerged. My stomach hurt, first at random and not-too-bothersome, then with excruciation. I noticed a pattern: an hour after I ate, my stomach would knot up for another three hours. It hurt so bad that often I could do nothing but curl in bed. Sometimes I threw up, sometimes I passed out from the pain, always I bloated. I discovered that eggs were a culprit, which made sense since I had been eating at least four eggs a day since the start of my diet. I had developed an allergy to them, much like I had to almonds and walnuts when I increased their intake back during my days of vegetarianism.
But eliminating eggs didn’t make the problem go away, so every meal became a game of waiting to see whether I would be entering a paralyzing state. It was hell, and quite hard to go to work.
I stopped eating food for several days. I tried only juicing vegetables, but still the pain came. I took digestive enzymes, drank bitters before eating to stimulate the digestive system, fasted, ate stomach-coating supplements like DGL, drank homemade bone broths, swallowed clay, but nothing helped. You could see my ribcage. Food had become something to fear.
I called the emergency room and told them I didn’t want to pay the price of coming in, but also that someone should help me figure this out. The doctor-on-call told me to take a proton-pump inhibitor, thinking I was having a problem with too much stomach acid. I immediately researched problems with stomach acid, read the book Why Stomach Acid Is Good For You, and instead came to the opposite conclusion: my stomach wasn’t producing enough acid. So I supplemented with Betaine HCL, which is essentially acid, and that helped temporarily.
But why wasn’t my stomach making enough acid? I saw a naturopath. He tested me for parasites. My results came back positive with three bugs: H Pylori, Blastocystis Hominis, and Campylobacter. The first two can cause lots of problems in some people but aren’t always bad; the third one is definitely bad. We came to believe that these parasites were causing the bulk of my stomach problems–and perhaps AS? Perhaps my new, highly acidic diet provided just the right environment for them to flourish.
Getting rid of H Pylori is hard since it’s become somewhat resistant to antibiotics. Getting rid of H Pylori plus these two other bugs is even harder. So I opted for a full assault. I was about 9 months into my No Starch Diet, my AS pain was low, but my stomach was a wreck and I was determined to get healthy. I undertook a quadruple-antibiotic protocol, which was intense, but most “alternative” methods of killing parasites seemed unproven at best and hoaky at worst. Still I followed the antibiotics with high-dose Vitamin C flushes and a month of taking a “natural” bug-killer called Paragone just in case.
We tested again for parasites. They were gone, thank God. My stomach felt better too. I took probiotics to build back the healthy bacteria, since antibiotics also wipe out good guys. I figured my gut was anew, an unprecedented opportunity to rebuild it’s ecosystem from scratch.
The acute episodes of stomach pain ended, only to be followed by a new symptom: vomiting. At night when I lied down to sleep, my stomach turned nauseous, and a couple of times a week I threw up.
I got other bad news. My cholesterol was a whopping 551. My LDL-HDL ratio was 9 to 1, which is almost impossibly bad. My doctor said she’d never seen anything like it. Even the internet failed to confirm many cases of cholesterol that high. I noticed when showering that my hair was falling out in clumps, and fatigue overwhelmed me. I remember being so tired I had trouble walking up stairs.
I was burning out on hope. Sure my AS pain was better, but my spirit was rotting. Throw in some chest pain and a family history of heart disease, and panic ensued.
I kept searching for answers. I learned from the Perfect Health Diet website that my high cholesterol may have to do with eating too few carbohydrates, and that the solution was to eat more. I had my thyroid tested, and a marker (Reverse T3) that should be out-of-whack if too few carbohydrates are a culprit was indeed out-of-whack.
But how could I increase carbohydrates without eating starches? Eating sugar left me bloated and feeling terrible, and the jury’s settled that sugar is mostly bad news. The answer lie in what the authors of the Perfect Health Diet call “safe starches”. These are a handful of starches that digest right away to glucose (a simple sugar), so they don’t stay in your gut fermenting. And fermentation in my gut is exactly what I want to avoid: I believe that overactive gut bacteria causes my immune system to flare up, in particular that overactive klebsiella bacteria causes my immune system to attack cells associated with the HLA B27 gene (a process called molecular mimicry). I believe this process is one root of AS. So long as food is easily digested, my AS radar won’t pick it up.
I began eating white rice and white potatoes, and shortly thereafter my energy improved. My stomach nausea at night also lessened. Six months later, my cholesterol dropped 220 points.
My goal when I began experimenting with diet was to have one day pain-free. In April 2013, fifteen months after I started my first experiments with diet, I woke up on a New Mexican farm with no AS pain anywhere in my body. It was the first time in years. Since then, the vast majority of my days are pain-free. When I experiment with eating new foods, my AS often comes back, so the disease is certainly not gone. But it’s asleep.
In my videos you can learn about a relapse with AS I had in 2014 after drinking bad river water. This confirms for me that AS is activated in the gut, and that paying attention to what goes into my body is forever my saving grace.