*Starch-Free Success Stories* Guest Blog: Jenn Ndlovu
Jenn Ndlovu’s (pictured above with her 2 children) story is like so many others: a mad hunt for a diagnosis only to be frustrated with a lack of answers. Her desire for relief of symptoms gave her the courage and strength to start a starch-free elimination diet (with the help and support of her general practitioner). Jenn shares how, after a season of significantly reduced pain, she successfully reintroduced many foods. Traveling internationally on a strict diet can be massively overwhelming but she made it happen (twice!). Your story is one worth sharing, Jenn! Well done!
Jenn Ndlovu’s post is part of the “Starch-Free Success Stories” series.
Initial Health Concerns
I’ve had spinal problems, mainly in my neck, since I was in a car accident at age 28. However, following my second pregnancy (age 35), a new and different pain developed after a health complication that required three types of antibiotics to resolve. This time, the pain was mainly located in my thoracic spine. Instead of the typical out-of-alignment-type pain I was familiar with in my neck, I felt more of a burning sensation. A gel ice pack and my TENS machine became my best friends.
It wasn’t long before things took a turn. One day I had a strange twisting-like sensation in the middle of my spine when I picked up a water kettle. I didn’t think much of it. The next day, when my husband handed me our 6-month-old son, my spine collapsed (my son landed safely on the couch as I slumped over). I will never forget that night.
An Enigma
My chiropractor was the first to suspect a type of arthritis. He quickly took x-rays which didn’t show anything out of the ordinary. As such, he ordered an MRI. Upon receiving the MRI results, my chiropractor told me to go to the ER immediately as he suspected an infection in my spine. Three of my vertebrae had fused, and osteomyelitis (bone infection) was a concern.
After endless blood tests, bone biopsies, CT and MRI scans, a PICC line, home healthcare, and IV antibiotics, I still had no answers. My pain (and now added numbness on the left side of my body) remained.
The local head of infectious disease transferred me to Cleveland Rheumatology, suspecting I had an autoinflammatory disorder called SAPHO syndrome (even though I didn’t present with the associated skin symptoms). Cleveland Rheumatology transferred me to their infectious disease department, where they repeated many tests (and did more). Still, no answers.
I was exhausted and running out of hope. One doctor there referred to me as the “Enigma” (which is hardly encouraging). It had been nearly a year since my spine collapsed when doctors from various departments at Cleveland decided that immunosuppressants would be worth a try.
A month (and countless phone calls with insurance) later, I started Humira. It terrified me to read the booklet of the side effects that came with it. In addition, the bill was astronomical! I was told that the results could take weeks, but I felt relief in days. I’d been on low-grade opioids for months and was thrilled at the thought of getting off those and feeling more like myself again.
Spondyloarthropathy, Ankylosing Spondylitis, Axial Spondylarthritis, SAPHO… To this day, I am an enigma.
Covid-19 and Complications
Then, COVID-19 happened. Immunosuppressants + pandemic = stress. My husband got very sick a few weeks into lockdown, which was super scary with me being immunosuppressed.
I developed psoriasis. Huge lesions on my scalp started to open, and my hair started falling out. At this point, it was impossible to see a doctor because of COVID-19 restrictions. Thankfully, because of telehealth, I got a prescription for fancy shampoo and foams from a dermatologist at Cleveland.
Desperate Times Call for Desperate Measures
I did a lot of thinking during this time. I was young to be on biologic medications for the rest of my life. I also realized that these medications were not treating the root of the problem (which only seemed to be worsening). It seemed doctors had done all they knew to do. In desperation, I prayed specifically, “Lord, if I’m missing something here, if there’s ANYTHING I can do that I’m not doing, please show me.”
In response, I firmly believe He led me to a group on Facebook called The Low/No Starch Lifestyle for Ankylosing Spondylitis and the book The Keystone Approach by Rebecca Fett. Initially, I thought, “There is no way the food will do anything.” I was already eating keto mainly because I knew that bread increased my pain, but I was skeptical, to say the least. However, I learned of so many people doing this crazy diet and living their best lives because of it. What did I have to lose? Pizza and pain.
I sought medical oversight on this venture. I set a start date for the end of May, hoping to take the Summer to sort out the diet. My delightfully supportive GP agreed to do a monthly blood test to monitor me through the elimination phase of the diet.
Before the start date, I decided to indulge in all the foods I would have to give up. I ate cheese, pizza, and sugar until I was miserable. The pain skyrocketed to an unbearable point. As such, I decided to start the starch-free elimination diet immediately. I started then and there, cold turkey, and didn’t look back. I consumed only bone broth for several days to detox, after which I ate only the foods I had chosen for my elimination period: chicken, lettuce, cucumbers, broccoli, blueberries, olive oil, and salt. I ate this for months (for breakfast, lunch, and dinner).
The Results
<Insert Hallelujah Chorus>
After only a week of fasting and elimination, I was pain-free. I was so pain-free that I accidentally skipped a Humira injection. I was elated and completely freaked out at the same time. It was unbelievable! I took one more dose of Humira because I didn’t know what to do. Then, again, injection day came and went with no pain. I waited several more days, and still no pain. I kept the injections I had, just in case, for several months, thinking I’d have a flare and need them, but I didn’t need them!
Gradually, at the end of the Summer, I started adding foods back in, one at a time. Eggs turned out to be most clearly tied to my psoriasis. It was a painfully slow process with lots of ups and downs, but very telling and useful. I reintroduced too much too fast and was in pain for weeks (especially after trying green peppers). You live and you learn!
Current Status
Now, I’m level 3 Keystone: no grains, no dairy, no nightshades, no eggs, no sugar, etc.
It’s easier to say what I DO eat: lots of meats, low-starch veggies, a few fruits, and a few nuts. That’s it. I rarely crave something I can’t have because I know that within 10 minutes of a cheat, I’ll be in debilitating pain. Most days I’m pain-free (or maybe a 1 or 2 depending on the time of the month).
My favorite treats are bacon, broccoli sauteed in ghee, and seltzer water. I’m finally at a happy place where the diet is doable long-term. There are lots of meals that my family and I can share such as stir-fries (cauliflower rice for me and basmati for them), basic soups, and our favorite: grilled meats and salads.
These days, my biggest challenge is international travel. Last year we had two long trips to South America and Southern Africa. Fortunately, both cultures we visited are big fans of meat. We have great friends and family there that graciously shopped ahead and allowed me to cook for myself. I love to cook, and that is the easiest way to keep food simple.
People often express pity when they learn about my diet, but those who know how ill I was totally understand that it’s worth it all. It still amazes me to say that I’m drug-free except for low-dose naltrexone (LDN) and just so grateful to feel well again!
Disclaimer: Starch-Free Feasting may discuss topics related to diet and nutrition. The information provided on this website is for informational purposes only. Consult a physician or medical professional before making changes to your diet and medication. You assume the risk of any potential injury that may result.
You’re indeed an enigma. Bravo bravo 👏