*Starch-Free Success Stories* Guest Blog: Amy Rosno
When I learned of Amy’s story I was amazed at her courage to challenge the status quo. After a time of mysterious issues, Amy was diagnosed with Undifferentiated Spondyloarthritis (USpA) – a diagnosis that is given to individuals who do not meet all the criteria for a definitive diagnosis of AS. The push for the only scientifically proven treatment (medications) was -and is- real. Amy’s decision to seek out the support and care of a functional doctor and follow through on the suggested dietary and lifestyle modifications proved to be life-changing.
Amy’s post is part of the “Starch-Free Success Stories” series.
The Beginning:
My journey with Undifferentiated Spondyloarthritis (USpA) started in July 2020 when I woke up one morning with a swollen right knee. I assumed I had injured it somehow, so I followed the RICE protocol—Rest, Ice, Compression, and Elevation.
After a few weeks with no improvement, I scheduled an appointment with my primary care doctor. She had me continue the RICE protocol for another week, adding ibuprofen to the mix. She would refer me to an orthopedic surgeon if there were no improvements. She, too, assumed my problem was injury related. There was never any mention of an auto-immune disease.
When I finally saw the orthopedic surgeon, he ordered an MRI, drained my knee, and gave me some cortisone shots, which offered much relief. The synovial fluid results had a high concentration of white blood cells. The normal range is 10 to 200 /mcL10 – 200 /mcL, and my count was 12,322 /mcL, yet he did not raise any alarm. The MRI revealed grade 3 chondral thinning and fraying. He discussed the likelihood of a future knee replacement and sent me on my way. It wasn’t until my left knee swelled two weeks later that he referred me to a rheumatologist.
During my first appointment with my rheumatologist, she ordered a series of blood work, and of all the tests, only one came back positive- HLA-B27. The combination of the synovial fluid results and HLA-B27 led to a diagnosis of Undifferentiated Spondyloarthritis.
The Treatment
My initial treatment was a prescription for methotrexate, an effective and widely prescribed medication for treating inflammatory types of arthritis. I took methotrexate for several months, but it made me lightheaded and nauseous. My next options were injectable methotrexate or Humira. My insurance would not approve injectable methotrexate, so Humira was my only option- somewhat ironic, considering Humira costs $75,000 a year. I remember asking my doctor if I could control my disease with diet and exercise. She insisted I could not; medication would be my only option to slow the disease’s progression.
Initially, I felt great with Humira. My symptoms were in-check, and my blood work at my follow-up appointments always fell within the normal range. But several months into the treatment, I started developing some strange symptoms. I would have intense burning sensations in my feet and excruciating pain in my ankle and calf.
Despite numerous tests, my rheumatologist could not come up with any answers for my new symptoms. She referred me to a podiatrist, who eventually referred me to a neurologist. He ran a litany of tests, including a spinal tap, brain and spine MRIs, skin puncture, additional blood work, and nerve conduction tests. The tests only revealed more symptoms, and I still had no diagnosis. He prescribed more drugs and requested follow-up appointments to monitor my symptoms.
Taking Back Control
Frustrated at the lack of answers, I realized I needed to take control of my health. I have been a member of several Facebook support groups for spondyloarthritis, but one, in particular, promoted a low-starch lifestyle. I was inspired by the stories of others who had stayed off medication and kept their disease in remission through lifestyle and dietary changes. But I had already been following a low-carb diet for several years, so I wasn’t convinced that diet could control my disease.
One day, there was a great discussion about functional medicine in the Low/No Starch Lifestyle group. I had heard of functional medicine but was reluctant because insurance wouldn’t cover expenses. I googled “functional medicine near me” and came up with a couple of doctors within an hour’s drive. I finally chose a doctor and filled out a contact form, which led to a 15-minute phone call, during which I explained my symptoms. She determined if she could help me. Her total cost for 16 weeks of concierge medicine was $2,300 plus additional tests. With the support of my husband, I lit the switch and began the journey to take back my health and determine the root cause of my problems.
Before our first meeting, the functional medicine doctor reviewed my health records from the past two years. She was convinced that the problems in my feet and ankles were either a side effect of Humira or the start of a second auto-immune disease; I had tested positive for Sjogren’s Syndrome, but my SSA titer wasn’t high enough to convince my rheumatologist I had the disease.
At the meeting, she had a clear plan of action, beginning with several tests, including a GI Stool profile and Metabolomix Test through Genova Diagnostics and an Elisa/ACT, which tests for immune reactions to food. When the results arrived, I felt like I finally had some answers. In addition to diagnosing me with leaky gut syndrome, where the gut lining is permeable, leading the immune system to react, I also had an overgrowth of several harmful bacteria in my gut, oxidative stress, an omega imbalance, and various food sensitivities. Based on these results, she prescribed several supplements and explained that I could restore my health with supplementation and a low-carb and low-starch diet.
Best Money I Ever Spent
In my situation, I could not have resolved my issues without the guidance of my functional medicine doctor. While a low-starch diet will always be a part of my life, the test she ordered got to the root cause. Every day I am mindful of what I eat as I work painstakingly to restore my gut.
January marks my first anniversary of being medication free. I have not had any flairs, and my neurological problems are almost completely gone. I continue to see my rheumatologist every six months, and she is amazed by my results. Each time I see her, she is convinced I am on borrowed time before I must resume medication. I hope to prove her wrong.
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.
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