My Autoimmune Journey to AIP
State Champion Runner to What Looked to Be Lupus
In high school I enjoyed being a cross country and track runner in the rural Willamette Valley and won the Oregon state title in the 3,000 meters my sophomore and junior years. Meanwhile, I had started to take minocycline, an antibiotic that my family’s doctor prescribed to prevent acne.
A year into my course of minocycline, I suddenly developed debilitating pain – at my worst moments, I could barely walk. I needed my parents to help me dress or undress, to descend the stairs to my bedroom, and worst of all, I couldn’t even run much at all without severe lupus-like joint pain.
The local rheumatologist put me on painkillers and prednisone, which helped with the pain but caused me to gain a lot of weight and feel sluggish, not at all like my best self. I was still able to do fairly well at a handful of track meets but my times suffered a good deal and I was clearly unable to get my times low enough to contend for a third state title during my final year of high school.
It wasn’t until my parents determined to take me to see a perceptive South African rheumatologist at Oregon Health and Sciences University up in Portland that we figured out what was going on. He instructed me to discontinue the prednisone and the minocycline at the same time, and my pain and other negative symptoms completely disappeared within a week. Simple as that.
His research had shown that a small percentage of young women who take minocycline for over a year develop lupus-like symptoms. Praise God, we finally had an answer and I didn’t have lupus after all. I could run again and prepared to train for my freshman year at Princeton on the cross country team.
I mention this experience because it gave me the first glimpse of what life with autoimmunity was like and how certain drugs can do more harm than good, especially when taken over a long period of time.
SI Joint Pain Post-Pregnancy, Searching for Answers
Fast forward over a decade later to 2011, the year my second child was born. During late pregnancy and shortly thereafter, I began to have some severe sacroiliac joint (SI joint in the lower back) and generalized back pain that was worse when I bent over to pick up my oldest child (then 2 years old) or toys, when I carried something heavy while walking, as well as several hours after falling asleep at night.
I didn’t know what was going on in the least bit but decided to go off gluten and try a vegan diet with lots of green smoothies, soaked grains, oatmeal and sweet potatoes. My moods were very uneven and the pain didn’t improve so I saw a physical therapist, who basically said I needed to put my hands on my waist and repeatedly bend my upper body backward to get some disc back into place. After doing that over and over, day after day, I still had significant lower back pain.
I pursued other physical therapists and got exercises for my hamstrings and psoas, was told to do more Kegel exercises to strengthen my pelvic floor after childbirth, and so on. I am grateful for the excellent advice I got to stretch and strengthen my muscles, yet the back pain persisted in a major way and the exercises didn’t seem to help.
My husband and I did a lot of internet research and realized my symptoms matched those of the autoimmune disorder ankylosing spondylitis: I would wake up almost every morning around 3:30 or 4 AM with such bad low back pain that I couldn’t fall back asleep.
I didn’t know what was worse, the pain or chronic loss of sleep. I slept on the couch most nights for 2-3 years as it seemed to help somewhat.
Diagnosis of Undifferentiated Spondyloarthropathy, Hypothyroidism and Autoimmune Uveitis
About 2.5 years after the onset of symptoms, I was referred to a rheumatologist, due to high blood markers for inflammation such as CRP, etc. That’s when I got the diagnosis of undifferentiated spondyloarthropathy (“US”). I didn’t have the HLA-B27 gene for anklyosing spondylitis, even though I had the exact symptoms, so that’s why he gave me the US diagnosis. His solution: high and frequent doses of ibuprofen or Aleve, and a prescription for Humira or Remicade.
When I later googled those drugs and read “may cause cancer,” coupled with my negative experience with minocyline and prednisone in high school, I decided I would need to dig deeper for answers.
Therein began my holistic approach to heal myself of my newly confirmed autoimmune disease. Let’s be clear: I wasn’t completely opposed to medication, as I know it can be necessary and a lifesaver in many cases.
Meanwhile I had begun to take thyroid medication after heavier menstrual bleeding and confirmed low thyroid on blood tests. I also bumped into a few incidents of diagnosed autoimmune uveitis or iritis (eye inflammation) which I did treat with the prescribed prednisolone eye drops (like prednisone but for the eyes) due to potential permanent eye damage if left untreated. But thankfully, I had begun to explore how a paleo-based diet could turn my autoimmune symptoms around and haven’t had to use the prednisolone since.
Discovering the AIP Diet
I knew from earlier years as a mom before my autoimmune diagnoses that the vegan diet didn’t give me the calm, peaceful energy I sought or help me to feel truly myself. So my first trial post diagnoses was with the no or low-starch diet, which as I had learned on the internet, many had used to some success for ankylosing sypondylitis, the autoimmune disease with closely matched symptoms of my autoimmune spinal arthritis.
It was recommended to use liquid iodine to test if foods had starch in them so that’s what I did, religiously at first. While the no-starch diet did seem to reduce my flares somewhat, when I realized that even seemingly healthy foods like brussel sprouts would be off limits I decided there had to be a better way.
That’s when I came across Dr. Sarah Ballantyne’s (aka The Paleo Mom) early website and her prescription for an autoimmune paleo (AIP) diet and lifestyle to combat autoimmunity. It was in its very early stages, and we purchased her book The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body to help us understand and implement the principles and framework of the AIP diet, about 3 years after the onset of my symptoms.
AIP Diet Didn’t Automatically Put Me Into Remission
The AIP diet allowed me to go from surviving to feeling like I could manage my autoimmune disease with a fair amount of predictability and confidence. Not only did it lessen my inflammation in my joints but it also helped my mood a great deal.
It was clearly helping me get through the day with less frequent and less intense pains in my spine, but I’ll be honest; it wasn’t a panacea.
Maybe it was because I didn’t stick to the Elimination Phase for weeks on end — I often would have some nuts/seeds or other non-compliant food when stressed or felt tired of the diet by the time the weekend hit or when on vacation. I continued to search for more answers to this pain which persisted, especially that which awakened me at 3 or 4 am.
I pursued acupuncture several times in hopes that would cure me, worked with my naturopath and a nutritional therapy practitioner on loads of different supplements, and determinedly pursued chiropractic (various ones and dozens of appointments, in hopes it was just the practitioner and not the practice that wasn’t working).
I even tried about 6 or 7 different mattresses (bought and returned until finally my husband compassionately but firmly told me he was done switching mattress and he would sleep on a twin one that he liked next to a twin of my choice, thank you very much!). Ironically, air mattresses and our sectional couch helped me sleep the best, not the expensive Tempurpedic!
Tweaking the AIP Diet
When I experimented with grains, dairy, potatoes, processed seed oils and nuts/seeds, or other foods not allowed on the AIP diet I would get bad flares – feelings of depression coupled with SI joint pain that would cause me to limp around at best, but at worst leave me unable to even move without extreme pain in my SI joint.
Granted, certain foods like sweet potatoes or coconut products which are generally allowed on the AIP diet, also gave me flares for many years, so the diet has to be tailored somewhat to account for the individual.
Leaky gut issues common in those with autoimmunity can lead to sensitivity to certain AIP foods — AIP starches like sweet potatoes and non-AIP foods like nuts and oatmeal which I ate a ton of on the vegan diet seemed particularly problematic.
Quantum Leaps: GAPS “Power Foods” and Mindset Work
Now after almost six years of self-experimentation and self-observation eating various foods (and backed up by my husband’s witness of my symptoms), I can definitively say that the AIP diet, combined with the AIP-compliant GAPS Intro Diet Stage 1 meat stocks/probiotic juice/”fat bombs” and Stage 4 homemade veggie juicing as I describe here, have been more valid than any other diet I have tried to combat my autoimmune flares, in my SI joint, other joints in my body, and in my brain.
After discovering these key GAPS “power foods” about a year and a half ago, I was able to begin to consume numerous eggs per day with no negative symptoms. This was a major breakthrough in reintroducing non-AIP food for me, after about 6 years of being on the AIP diet and even consuming organ meat regularly for periods of time!
After beginning regular mindset work a couple years ago, I have noticed even greater benefits to my mood, my outlook on life, my ability to handle stress and challenging people (yes, they exist even in our own families!) and my ability to handle non-AIP or non-paleo foods.
I no longer need to adhere to even a strictly paleo diet, though the AIP diet and my “power foods” are what I always return to after I veer a little too far off.
Fundamentally, the AIP and GAPS diets emphasize the most nutrient dense foods with the lowest chance of irritating the gut and inflaming the immune system and that is why they help so many autoimmune patients like myself recover from a life of continual flares.
I’m so grateful that this scientifically-based diet has helped my body heal physically through foods high in nutrient density that are less likely to cause an inflammatory response (rather than masking symptoms as so many pharmaceuticals or OTC painkillers do).
I’m also so thankful that I don’t need to worry about any unpleasant drug side effects or increasing my risk of other long-term health problems from a TNF inhibitor, corticosteroid, or long-term use of an OTC painkiller.
It’s awesome to see how Dr. Ballantyne’s work has taken off and helped thousands of people like myself go into remission across the world.
Your AIP and Mindset Journey
I recommend you give this diet an honest chance, look for the science-based answers you need from paleo diet clinical trials and studies that continue to support its scientific validity, find community support in my Successful Autoimmune Women private Facebook group, and most importantly, don’t forget to examine and begin work on shifting your MINDSET!!! It is truly a game-changer, and to me, it’s the most life-changing and exciting piece of this puzzle we call autoimmunity.
What led YOU to the AIP diet? How is it working out for YOU? Comment below!