*Starch-Free Success Stories* – Janneke Phung
This is my own story. I’ve shared lots of bits and pieces along the way, but this recounts my story in greater depth and answers questions I am regularly asked.
I am an open book, so if you have questions that aren’t answered here, please feel free to contact me!
This post is part of the “Starch-Free Success Stories” series.
Since approximately age sixteen, my body felt like it had been falling apart. Upon diagnosis at age 35, I realized all these broken pieces were part of a disease called Ankylosing Spondylitis.
– Janneke Phung
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
In 2019, I was diagnosed with ankylosing spondylitis (AS). I had experienced AS symptoms for decades before diagnosis. My symptoms included but were not limited to:
– I went through a season of severe TMJ pain that caused headaches, ear-, neck-, jaw-, and facial- pain. My emphatic dentist made me a nightguard. The pain did not subside, but my teeth were more protected from the teeth grinding caused by the stress of pain.
– My wrists hurt to the point where it became hard to hold my twin infants as they nursed. Health professionals told me this was normal post-partum pain. As such, I started wearing wrist braces as prescribed by my doctor.
– I had terrible migraines for many years, especially while studying at university. My physiotherapist gave me a document that showed diagrams for correcting my posture while studying. My family doctor prescribed muscle relaxants, pain medication, and NSAIDS – enough pill bottles to fill half a shoe box.
– Occasionally, I experienced terrible sciatic nerve pain that would radiate down my buttocks, legs, and feet. This pain left me crippled at best and in bed at worst.
– My digestive system was unhappy. For over a decade before being diagnosed, my body showed symptoms of being intolerant to dairy, gluten, etc. I tried to eat healthy, homecooked meals, but I did not know what other dietary modifications to try without knowing what was ailing me.
– Eventually, I started experiencing costochondritis pain, which often flared at night. This inflammation of the cartilage that connects ribs to the breastbone usually took my breath away at night. Sitting upright seemed to help settle the pain.
– I thought I was too young to experience morning stiffness, but my body was stiff as a board upon waking every day! It took a few hours of stretching and movement every morning to function again.
– Back pain was the story of my life. For decades, I complained of back aches – always searching for an ever-elusive cure (or diagnosis, for that matter).
– Neck pain was common. I attributed this to the whiplash I received from a motor vehicle accident at the age of 16.
– I started limping due to pain in my heel. I ditched all my high heels (no regrets) and started wearing ‘sensible footwear’, which helped but did not cure the pain. As it turned out, I was suffering from plantar fasciitis – something I thought only senior citizens experienced.
While the nightguards, wrist braces, NSAIDs, muscle relaxants, posture modifications, and proper footwear were sometimes helpful in treating my painful symptoms, they never helped me get down to the bottom of my health concerns.
Since approximately age sixteen, my body felt like it had been falling apart. Upon diagnosis at age 35, I realized all these broken pieces were part of a disease called ankylosing spondylitis.
What has been your approach to healing?
My approach to healing has been 100% through diet and lifestyle modifications. Initially, I was skeptical of this approach. The only reason I decided to go this route was because mainstream medical help (biologics) was not available to me at the time of diagnosis. I was very desperate for any relief, so I dove into alternative lifestyle modifications as a last-ditch effort. I never thought I would once again live without pain and medication, but I am doing better these days than I could have hoped five years ago.
Initially, my approach was to cut out of my diet any food that could leave my body feeling inflamed. I did a starch-free AIP elimination diet. The rumor is true: I ate only broccoli, chicken, olive oil, salt, (and a handful of blueberries some days) for many months on end, which isn’t necessarily something I would recommend, but I’m grateful it moved me in the right direction.
After dedicating myself to this period of healing, I found that the inflammation in my body had calmed down. When my pain had mostly subsided, I started reintroducing foods one at a time. This approach allowed me to pinpoint the foods that caused a reaction in my body, thus eliminating those foods. I am grateful that I was able to reintroduce many foods successfully.
Recently, I have been more intentional about healing my gut. With more healing will, I hope, come a higher tolerance for healthy foods my body is currently sensitive to. In this stage, I focus on consuming lots of bone broth, meat stock, fermented foods, etc.
What led you to try a healing diet approach?
Sheer desperation led me to try a starch-free elimination diet. Fear of pain and rapid disease progression kept me going when the going got tough.
What was the lowest point on your health journey?
My hardest AS days were between 2018 and 2019. I had infant twin boys at this time, in addition to a toddler. Because of colicky/refluxy infants and a toddler who was ready for the day at 6:30 daily, my lack of sleep was at a record high. When my boys finally started sleeping through the night, I was awake with severe pain in the wee hours of the morning. My breaking point was the night when I went to pick up my wailing infant from his crib, but my body could not physically bend to reach him.
When you found a protocol to help you heal, what was it, and what was your first indication that it was working?
A starch-free elimination diet was my first attempted protocol for gaining control of my ankylosing spondylitis. Truthfully, I felt worse before I felt better. The early withdrawal symptoms had me seriously wondering if the effort was worth it.
I felt insecure and inexperienced as I embarked on this rather radical dietary journey to get my AS symptoms under control. So, early on, I sought expertise from a dietician and a naturopath to walk me through this journey. Both were likely well-intentioned, (however, the dietician ‘fired’ me when I refused to return to a well-balanced Standard North American Diet), but neither understood my need for a starch-free diet. Seeking out their support and guidance ended up setting me back because it caused me to cave into taking recommended starchy supplements. I was told, “Two steps forward and one step back is sometimes how it goes” – but those starchy supplements were more like 5 steps back for me.
From that point on, I decided to do it on my own. I needed to know whether a strict starch-free diet (I tested my food for starch with iodine) would make me feel better. After a time of serious commitment to starch-free eating, I experienced an enormous improvement in my pain levels. I am still shocked (and forever grateful) that I did not throw in the towel when the going got tough.
I remember the day when I did a shoulder check while driving. Not only did I not feel pain while cranking my neck, but I felt like an owl as my neck effortlessly turned further than it had in years. Could it be true? Was there a reduction in stiffness? Symptoms slowly but steadily started melting away. I could sleep better. My jaw no longer hurt when I chewed food. My wrists felt capable of lifting again. My back was less stiff than I remember it being for years. Ankylosing spondylitis symptoms became both more rare and less severe.
What foods are you most sensitive to? Which foods do you avoid?
Starchy foods, refined sugars, refined oils, and too much dairy cause reactions. Unlike many other autoimmune sufferers, I have no problem with nightshades, nuts and seeds, eggs, etc.
Share any personal victories your real food journey has helped you achieve!
I have skied down mountains with my oldest son. I have taken my twin boys on a bike ride – pulling them both in a bike trailer. I have hiked mountains with my kids on my shoulders when the going got tough for them. The real victory is that I can now do any of those activities on any given day. I am rarely at the mercy of ankylosing spondylitis anymore.
Where do you source ingredients for your recipes and daily life?
I prefer to buy from local farmers. I typically buy my eggs and chickens from local farmers. I buy beef from my dad, who is a local farmer. My mom has a large garden from which she generously shares its bounty. I have purchased dry organic ingredients (coconut, sesame seeds, etc.) from a local mill, but I also buy these at Costco. Truthfully, my local Costco gets a lot of my business because it is the one place that makes this diet slightly more affordable. I have shared about my favorite Costco buys here.
What do you eat when you are HUNGRY (or HANGRY!) and need something quick?
– Homemade trail mix (nuts, seeds, dried fruit, etc.) is a quick go-to.
– Eggs are quick and easy
– Coconut yogurt with blueberries and homemade granola
– Organic Seaweed
– Fruit (like oranges, grapes, watermelon, pineapple, etc.)
– Starch-free crackers and smoked cheese, etc.
What are your favorite ways to pamper yourself?
A good book (ideally in a sunshiny spot) while enjoying some coconut yogurt with berries and paleo granola is at the top of my list!
What is your go-to easy breakfast? How do you start each day?
Breakfast is super easy: I do intermittent fasting.
I never thought fasting would be for me, but intermittent fasting has been very manageable. I let my digestive system rest for at least 16 hours a day. I hope this rest will allow my gut to continue to heal. It would be so virtuous to say that the health benefits of intermittent fasting were my motivation, but frankly, I just like having to think of only one meal in the mornings: the one for my family. Occasionally, I will have a mug of meat stock around breakfast time.
What are alternative therapies you have used?
One of my most helpful alternative therapies has been chiropractic care. Part of my success with chiropractic care comes from seeing a practitioner familiar with my health complications. He uses a gentle and precise adjusting method with an Activator tool. This gentle method of adjusting subluxations is crucial for those with AS.
It can seem like our lives are consumed by chronic illness, but there is so much beyond those struggles. What brings you joy?
I find joy in living life purposefully. Starch-Free Chocolate Chip cookies bring me joy, too.
What advice do you have for people who are just starting?
While diet and lifestyle modifications aren’t for everyone, I see repeatedly that a starch-free diet done with great diligence (gluten-free is not the same as starch-free) is worth the effort!
For more about my journey, check out these blog posts:
PODCAST: Janneke Phung and Nathan Mennel
Janneke’s AS Journey: From Frequent Flares To Starch-Free Feasting
Lifestyle Modifications: How I Gained Control Of My Autoimmune Disease
When ‘Imagined’ Pain Becomes a Real Diagnosis
No Silver Bullet: Things I Have Learned Along My Non-Linear Healing Journey
My Top 2 Complementary and Alternative Therapies for AS
How Minimizing My Symptoms Delayed My AS Diagnosis
How Lifestyle and Diet Modifications Provided Me With Hope and Relief
5 Key Elements of My Morning Routine with Ankylosing Spondylitis
My Top 5 AS Flare Triggers — And Why It Matters
What My Life Looks Like 4 Years After My AS Diagnosis
My Spiritual Struggle with Chronic Disease – PART 1: Suffering
My Spiritual Struggle with Chronic Disease – PART 2: Hope
After having walked this journey, I have become passionate about walking alongside others seeking to manage Ankylosing Spondylitis with diet and lifestyle modifications. While I am not a medical expert, I have learned so much along the way, both from personal experience and much research. If there is any way in which I can be of support to you or if you have any questions that haven’t been answered yet, please reach out to me. Walking alongside others has brought purpose to my journey and it brings me joy to connect!
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