5 Years Post-Diagnosis: No progression. No Meds.

December 16, 2024 Janneke Phung

5 Years Post-Diagnosis: No progression. No Meds.

Let’s start at the beginning.

I was crippled. I suffered from costochondritis, severe back pain, joint pain throughout my entire body, plantar fasciitis, debilitating stiffness, etc. One night, I stood beside the cribs of my infant twins, who were screaming, wanting to be picked up. I couldn’t. My body physically could not bend to reach down to comfort them. I was broken in every way, it seemed.

That moment led me to push hard for a diagnosis. I would no longer accept the idea that my pain was in my head, as several medical professionals had suggested. I waited for 18 months for the MRI, which ultimately led to my diagnosis.

When I was initially diagnosed 5 years ago, I had no access to medication to treat my symptoms. NSAIDs had long stopped working. I was desperate for relief, but the wait to see a rheumatologist who could prescribe biologics was 8+ months long. I had no patience for that. Inflammation was eating me up, which lit a fire under me to do what I could during those 8 months of waiting to try and get the disease under control with diet and lifestyle modifications. After hours of research, I found anecdotal stories of people who had seen success with a starch-free diet. That’s all the inspiration I needed.

From one day to the next, I started a starch-free elimination diet. I ate only chicken, broccoli, salt, and a handful of blueberries each day for more months than I care to count. I look back on that now and don’t necessarily recommend others do the same thing. Carefully curating an elimination diet is important to consume as many nutrients as possible while still avoiding all foods that have the potential to cause inflammation.

If I had to do it over again, I would include a greater variety of nourishing proteins like beef, fish, etc., and a greater variety of starch-free herbs and veggies. This increased variety would have made the elimination diet more palatable, equally effective, and more sustainable. I moved forward headstrong, but I’m certain this season of extreme elimination could have been more tolerable by making those little changes.

Since that day, I have not intentionally cheated. I do not believe I could reap the benefits in the same way if I were not 100% committed to eating starch-free. A few months into the elimination diet, I wasn’t aware that some of my supplements were starchy. After testing them for starch with iodine and learning that they were, indeed, starchy, I stopped taking them. This resulted in noticeable improvement. Once all starch was out of my diet, my AS symptoms started subsiding at a rapid rate.

Once all my symptoms had significantly subsided, I started slowly reintroducing starch-free fringe foods like dairy, eggs, a greater variety of fruits, nuts and seeds, etc. I sipped chicken meat stock daily, in an effort to heal my gut. I tried adding probiotic supplements (even starch-free ones) and found that they didn’t work for me – causing tummy upset and painful joints. Eventually, I started making sauerkraut, and (starting with very low doses) that has been a successful addition to my diet. I imagine that the probiotics from the sauerkraut (and also from my favorite coconut yogurt) have contributed to a happy, healthy, healed gut.

And the gut is where it’s at. More than 2000 years ago, Hippocrates supposedly declared that, ‘All disease begins in the gut.’ Ankylosing Spondylitis is an inflammatory disease that is linked to the gut. While we do not yet know the intricate details of the link between the gut and Ankylosing Spondylitis, I can testify from personal experience (and anecdotal observation) to the truthfulness of Hippocrates’ statement. A healthy gut lining and a happy microbiome play an enormous role in reducing symptoms of AS.

My most recent MRI, the first one done since my initial diagnosis (and 5 years after having started a starch-free diet), proves there has been zero disease progression. It worked!!!

This blog post isn’t intended to come across as boastful. While I have put a lot of effort into managing Ankylosing Spondylitis naturally, I admit that every case is unique and that not everyone may end up as fortunate as I (DISCLAIMER: I am not a medical professional, I am speaking strictly from personal experience and observations). But, I share this because I want to offer hope. I want readers to know that there are absolutely stories of individuals who have deliberately chosen to focus their efforts on managing AS naturally and have had hugely successful results. I’m one of those people. Mainstream management of AS is not the only way, although, unfortunately, it’s often the only option presented to those who are newly diagnosed.

Fellow AS patients regularly ask me, “What is it, exactly, that you eat in a day?” hoping to find the magic diet for success (I’ve made a starch-free Costco shopping list). Unfortunately, the answer for many isn’t that easy. Not only is there not one diet that works for all, but everyone is also in different stages of their healing journey. For example, I can now eat many more foods without experiencing pain than I could have when I started this journey 5 years ago. The focus must be on healing your body with foods that do not cause inflammation to your unique body.

The fact that a starch-free elimination diet is at the core of many success stories is noteworthy, but it would be deceptive for me to say that a starch-free diet will cure all inflammation in everyone’s body. There are common inflammatory foods that should be avoided by everyone as they cause inflammation (refined carbs, trans fats, etc.). Other foods, often called fringe foods (nightshades, dairy, nuts and seeds, etc.), cause inflammation in certain segments of the population. The elimination diet is especially helpful in customizing a diet specifically to your body.

I often had to remind myself that improvement is not instant or linear. At times, it felt like two steps forward and one step back. Compare a broken gut lining to a wound. Wounds don’t heal overnight. If we continue to consume foods that aggravate our gut, we can’t expect healing to occur. Treat it like a wound and expect healing to take time.

These days, my diet is varied and delicious but still free of starch and other more common inflammatory foods.

Initially, if you had told me that my debilitating pain stemmed from the gut, I would have laughed at you (or maybe lashed out in anger and disbelief). It seemed too ridiculous that something as simple as modifying my diet could take away the severe symptoms I was experiencing. But here I am, 5 years later, telling the tale of my journey – not only of managed symptoms but a wretched disease stopped dead in its tracks as a result of a starch-free diet.

I’m an open book. I am passionate about helping others. I’m convinced that my journey is meant to inspire others and offer hope. Please feel free to reach out if you have questions or need encouragement. Please note, that my motivation is in helping you succeed – there is zero financial gain for me unless you choose to donate to the initiative of this website. I will be the first to tell you that the journey has not been easy, but it has been 100% worth it for me!

Now let me go and jump on the trampoline with those sweet twins whom I couldn’t lift out of their cribs as infants.