My Autoimmune Journey

Updated: Apr 20

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Sometimes I feel shame for my journey. My story of healing has not been linear and sometimes I beat myself up for not being a better example of a healthy lifestyle.

But I also believe there is value in my story, there are lessons here that I needed to learn.

Before 2020, I had chronic lower back pain. Sometimes, my hip would hurt when I walked or I would get a shooting pain from my hip up my back.

I was always told this was due to scoliosis I was diagnosed with as a child. And that, with enough core strengthening and yoga, the back pain should go away.

Periodically, the pain would go away. I would go months without any issues, and then there would be months that I asked my partner to literally press all of his body weight onto my lower back just to feel a moment of relief.

In 2019, I remember writing out a New Year’s Resolution: be able to say “yes” to any invitation for physical activity. It had come to the point that this pain was restricting my ability to go on hikes and participate in life with friends.

Looking back, it is crazy to me that I thought this back pain was merely an inconvenience. I thought that it was my own fault for not doing more yoga!

After starting a new way of eating in January 2020, the chronic pain I experienced was eliminated. I could move without pain or discomfort for the first time in my adult life. Since I thought the source of my pain was scoliosis, I attributed this to no longer consuming oxalates and the overall reduction of inflammation in my body.

Because I was able to work out more seriously than I had been able to in the past, I decided to pursue an extraordinary goal - I wanted to compete in a bikini competition.

(Spoiler alert: it was a bit of a clusterf*ck, I have no regrets about stepping on stage, I am very proud of myself for doing that, but please go watch my “I Was Wrong” video on Youtube if you are interested in seeing more details about this)

The day after my bikini competition, the first horseman came: Plantar Fasciitis

Plantar Fasciitis is inflammation of the tissue that connects the heel bone to the toes. Mine started in my right foot and eventually progressed into my left foot as well. Apparently, this is fairly common and can be caused simply by wearing the wrong shoes. For me, what started as a slight inconvenience turned into agony, each step sending shooting pain through my heels.

I will do a separate post about this eventually because I did a lot of research and find it fascinating but want to continue with the big picture story here.

A couple of months later, the next horseman arrived: Uveitis

Uveitis is inflammation of the inner eye. Again, this can be kind of common, however, severe or recurring uveitis typically prompts further testing into viral or genetic causes. My uveitis progressed quickly, I became legally blind in my right eye as my world grew increasingly dim and blurry.

amoeba pupil

Then, there was the third horseman: GI Distress

This is going to get TMI but I experienced about a week of urgent, incessant diarrhea. I have always prided myself in being a human garbage disposal - GI issues were something very new to me. At the time this fun new experience started, I was visiting my Grandma in California. I only had a couple of days there left so I decided to ignore it (don’t be like me) until I could get back home to appropriate medical care.

contact dermatitis
also started having weird contact dermatitis

And then there were four, horsemen, that is: Enthesitis

Enthesitis is the inflammation of tendons and ligaments. This symptom would turn into the most devastating and life-altering of the four.

Within a few quick months, I required a cane to walk. I was unable to put my right heel down on the floor. And every morning, I would lie in bed for hours, dreading the eventuality of rolling over and standing up. You see, overnight my back would become so stiff that any significant movement would feel as though I were breaking apart bones that had fused overnight.

Through all of this, I was terrified, I had no idea what was happening to me.

The Apocalypse: Diagnosis

Through the ophthalmologist treating my uveitis, I began testing to see if there may have been a viral or genetic cause for my inflammation. I began steroid and dilation drops for my eyes and anti-virals (just in case that was the trigger). Once my blood tests came back negative for a viral cause, I stopped the anti-virals.

The blood tests did come back with a different positive value though: HLA-B27

HLA -B27, while not inherently a bad gene to have, is commonly associated with spondylarthritis diseases. (Words are about to get obnoxiously large here and I apologize). Basically, these are arthritic diseases that tend to involve the spine.

After referral to a rheumatologist and some very expensive imaging, I was diagnosed with non-radiographic axial ankylosing spondylitis.

Ankylosing Spondylitis (AS) is an inflammatory disease that causes bones in the spine to fuse over time. For many people, this presents as chronic lower back pain with peripheral symptoms (like plantar fasciitis, uveitis, GI distress, and enthesitis) appearing during flares.

The good news from the imaging is that I do not appear to have significant permanent fusion yet. The other good news is that so far I have only taken NSAIDS, and avoided the other scary prescriptions used to control this condition.

Since receiving my diagnosis I have started to do my own research into this autoimmune condition and was referred to a Facebook group: The low/no starch diet for Ankylosing Spondylitis. This group has been a wealth of resources and support. They follow the teachings of a UK rheumatologist, Dr. Alan Ebringer, that found the elimination of starch to have the greatest impact on his AS patients.

He found that many of his AS patients appeared to have an overgrowth of a specific bacteria, Klebsiella Pneumoniae, in their gut biome. This gut bacteria thrives on sugar and starch and when our bodies sense the overgrowth, it begins the attack.

This is where HLA-B27 comes in, Ebringer found that the body struggles to differentiate the Klebsiella bacteria from this gene, and so attacks itself in pursuit of killing the overgrowth.

All to say, there appears to be a genetic predisposition (HLA-B27) and a trigger (bacterial overgrowth).

The Flare

So now that we know the diagnosis and that my symptoms can be attributed to an autoimmune flare, the obvious question is:

What caused the flare?

Remember the bikini competition I brought up a while ago? In preparation for that show, I severely under-ate, and following that show, I planned some carby treats. (I also had exposure to some c-word stuff that I feel is significant BUT takes away from the purpose of this narrative and doesn’t change my diagnosis or treatment, but yeah it really f*cking sucks).

In summary, I don’t think there was one specific thing that caused my flare, I think that I participated in a lot of behaviors that increased my risk.

So, where do we go from here?

As it stands, I am in month 6 of this autoimmune flare-up. Don’t get me wrong, things have drastically improved - I have almost completely restored vision in my right eye, I experience normal poops (yay!) and I no longer need a cane to walk - but I do feel like my body is overly sensitive and reactive. My current health feels fragile and my progress to better health feels slow.

My purpose in telling you this very long story (thank you, by the way, if you read this far) is to set the stage for the following posts where I share my intentions and strategies for achieving better health.

In my next post, I will share my plan of attack on bacterial overgrowth and how I intend to fortify my health to become stronger and more resilient to potential autoimmune triggers over time.

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