Autoimmune Disease: My Story
One big piece of my testimony is how the Lord sustained me through five difficult years of living with chronic pain and an undiagnosed autoimmune disease. I even wrote a song about it, which is the title track of the album I released in April, 2017.
I lived with intense, chronic back pain that began before I turned 30. I saw chiropractors and doctors, had x-rays and MRIs, and lots of blood work, but no one could figure out what was wrong with me. By 2015, I was averaging about 3 hours of sleep per night, suffering from debilitating pain, brain fog, anxiety attacks, thinning hair, scaly rashes on my knees and elbows, and regular digestive problems. During the most stressful days of my life to date, I developed an unusual eye condition called anterior uveitis which landed me in the optometrist’s office. The eye doctor was concerned about a systemic disease and told me to see my GP immediately with a request to be tested for Ankylosing Spondylitis (AS).
When I researched this strange-sounding disease, I cried. I had every single symptom. My GP sent my blood test to Mayo Clinic, and it soon came back positive for the genetic factor associated with both AS and Psoriatic Arthritis (PsA). My GP referred me to a specialist, but it would be four months before I could get in.
Meanwhile, I spent two solid weeks researching my disease and treatment options. I figured the specialist would suggest biologics or Anti-TNF medications, all of which scared me when I read the side effects. In the Google search bar I typed the words: “treating Ankylosing Spondylitis naturally” at which point I landed in an entire world of alternative treatment options, most of which centered around dietary changes.
Could something as simple as a diet change end the pain that had characterized my life?
I had nothing to lose. I dove in.
I began with the Autoimmune Protocol Diet, but AS requires a modification removing all starch from the diet. I kept a food/pain journal and noted everything I ate and my pain levels. After two months, I watched my pain decrease from a 9-10 (every single night) to about a 6-7. Two more months passed, and I was down to a 3-4 pain level. By the time I met with my specialist (about 6 months after diagnosis–there were a lot of scans/blood work/MRI initial appts), I was almost completely pain free. The only medication I took was a mild anti-inflammatory to keep my levels low in order to prevent the eye condition from returning.
I remember the first night I slept for eight straight hours. I got out of bed the next morning and began to weep. I literally couldn’t remember the last time I’d slept without pain–it had been six years, at least. I have mostly been in remission since then–eighteen months and counting! I stuck to the diet for eight months until an unplanned trip meant that I had to eat non-compliant foods. I found I tolerated them fairly well. The last year I’ve gone back and forth between “regular” eating and my modified AIP diet. I find that too much gluten, grains, and sugar will (over time) begin to wake up my symptoms. I’m still learning to balance what can be a challenging way to eat with the way everyone else eats. For me, this means I control my diet with gratefulness for the Lord’s provision at home, avoid too much gluten and dairy when traveling, and always eat whatever is served to me in another person’s home (gratitude is more important than one non-compliant meal). My parents are very good about making sure I have options when I visit them, and I sometimes bring snacks to help me when I’m visiting other family members.
For my own family’s meals, we always eat the same main course, but I usually provide a non-compliant side like pasta, rice, bread, or starchy vegetable for them so they don’t feel deprived. Right now I would describe my diet as paleo/low starch. I have a huge weakness for lime tortilla chips and Twizzlers, but other than that I am usually pretty satisfied. Sometimes I plan for a cheat if it’s a special event or restaurant trip, but I know I have to buckle down afterwards.
Here are the websites and books that have been most helpful for me.
- Sick Opportunity (literally the first website devoted to AS diet that I clicked on; super easy “getting started” list
- KickAS.org (tons of research and a large forum for your questions)
- Forest & Fauna (Andrew Wyckoff had a No Starch Diet e-cookbook that was a huge help. It’s not available anymore, but the website is full of good recipes. Try her persimmon pie this Thanksgiving and always make the candied bacon!)
- No Starch Diet for AS Facebook Group (such a kind, helpful community)
- The A.S. Cookbook by Andrea Cranman (Find this book in the website’s shop. I make the almond flour pancakes at least twice a week)
- A couple of helpful podcast interviews with folks treating A.S. through diet: Autoimmune Wellness + Jolaine Weins, Phoenix Helix + Charles’ story, and this episode of the Phoenix Helix Healing Stories podcast with Jeanne Drennan.
Auotimmune Protocol Diet (AIP)
- Autoimmune Wellness (there’s a helpful Facebook page, too)
- Phoenix Helix (her podcast is excellent! Look for the “Healing Stories” episodes to be really encouraged how people with your disease are overcoming their symptoms through diet)
- Danielle Walker at Against All Grain (Every recipe is gold. I have her first book Against All Grain as well as Celebrations. I have heard great things about Against All Grain: Meals Made Simple and her book coming out next year sounds fabulous as well.)
- Here’s my Pinterest page devoted to both AIP and NSD recipes (you’ll have to check the ingredient list to make sure it’s compliant for YOU because AIP and NSD have different guidelines for compliance)
- Whole 30 is a great way to see if you have food sensitivities or to just “reset” your body if you’ve been feeling bad. A simple Pinterest search will bring up more recipes than you actually need for compliant recipes.
- Some of the products listed in the video below: Collagen Hydrolysate, MCT oil, Nutiva Coconut Oil, Almond Flour, Coconut Flour, medjool dates, Pyure stevia, and Pacific Bone Broth.
- I love to cook with a cast iron skillet, but since they don’t make mine anymore, I’d recommend this one.
- Nuco Coconut Wraps (starch-free, grain-free, paleo)
- Here’s a live video I enjoyed doing on Instagram that includes my story, my journey to wellness, and a few more products I really enjoy:
(This post contains affiliate links which means I receive a small commission when you order any of the products listed, which helps keep this blog running!)