Dana’s Recovery from Gluten Ataxia, Eosinophilic Esophagitis and IBS

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Only in hindsight can Dana tie her frequent childhood illnesses to the various autoimmune diagnoses she would receive as an adult. By the time she was in grad school, her health was deteriorating so significantly she was afraid she wouldn’t make it to her 30th birthday. Instead of joining an architecture firm at 28, Dana spent two determined years getting to the bottom of her health issues and finding solutions. Her turnaround is nothing short of a miracle. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

Looking back on my life, knowing what I know now about autoimmune disease and chronic illness, I can see that the persistent health issues I had as a kid directly led to the health crisis I’d have in my 20’s.

As a kid, I had chronic ear and sinus infections (which I got so often that I actually had a standing antibiotic prescription waiting for me at our local pharmacy), debilitating and embarrassing stomach problems, seasonal allergies, headaches and frequent bouts of vertigo.

When I was 8 years old, I was hospitalized with E. Coli and a severe complication known as hemolytic uremic syndrome. At the time, my parents and I were told that if I recovered, we could expect a full recovery. Now we know that E. Coli is linked to the development of some autoimmune diseases.

In college my health continued to worsen, deteriorating completely when I was in graduate school. I’d eventually spend 18 years before getting a suspected diagnosis of gluten ataxia (a rare neurological autoimmune disease that damages the cerebellum), and 7 years of seeking a diagnosis for what I’d learn was eosinophilic esophagitis (an autoimmune disease that causes severe inflammation of the esophagus). Along the way, I was also diagnosed with IBS-D, SIBO, PCOS, metabolic syndrome and hypothyroidism.

Describe what the lowest point on your health journey was like.

I was in a new town and was not healthy enough to leave our apartment. The isolation was so intense. Because I had such extreme fatigue and debilitating digestive issues, I could not go out, explore, meet friends, and create community. I could not even walk up one flight of stairs without needing to rest. I was in the process of grieving my intended career path in architecture and the life I’d planned for. I knew that I could not even work part time. I was housebound.

My symptoms were intricately tied to who I was. I had been losing my ability to speak, and also losing fine and gross motor control for several years before my big crash. For someone who had been studying the arts since childhood, and who had been focused on entering a field which required fine motor skills and where communication is key, this was both devastating and humiliating.

I looked fine (though tired) on the outside, so I really felt invisible. This was the lowest point of my health journey because there was so much physical pain, exhaustion, arthritis, debilitating brain fog, regularly choking on food, and extreme digestive issues. To make matters worse, because of the severity of ataxia I was experiencing, there were times that I could not talk. Not being able to communicate what I was feeling or what my needs were made me feel truly trapped in a body that was actively breaking down from the inside out.

I could not see what a future living like this, while continuing to deteriorate further, could possibly look like.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

It was when I began having difficulty swallowing water, the most basic of needs, that I felt deep down that I might not make it to my 30th birthday.

I realized that I had a choice to make. I could admit how absolutely exhausted I was and give up whatever control over my life I had left, or I could figure out why I wanted to keep going and do everything I could to find a way through, knowing that there were no guarantees.

This choice was crystal clear to me because I had my “why”. My husband and I had been married just over a year at this point. I had made a lifetime commitment to him and I had no interest in having that commitment be so short term.

Together, we decided to commit ourselves the two years I had before I turned thirty to work through this. Instead of joining an architecture firm like I had planned, my job became designing a plan to arrange my life in a way where I could live well with autoimmune disease.

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

I had been gluten free for 4 years at this point and certainly had seen some improvement in some areas, so I had the sense that this was somehow related to my diet. I decided to work with a nutritionist. However, this was in the early twenty-teens, before the Autoimmune Protocol was a thing. I tried so many diets and protocols with her, and was actually getting sicker. Although I ended our working relationship, she emailed me the name of a book to read, because it sounded like me, though she did not know anything about the protocol herself. It was Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, and it did sound like me. This was the first time I saw myself and my journey reflected by another person. So, as a last-ditch effort, I decided to try this protocol- the Specific Carbohydrate Diet.

And I started to see improvements that week! My digestion had been a total wreck at this time. I was making emergency runs to the bathroom over a dozen times a day. My transit time (the time it takes for food to move through your digestive system) was less than 15 minutes. And, because of the eosinophilic esophagitis, I could not swallow. But the pureed chicken soup that was part of the protocol was something I could both swallow and actually digest. It was nothing short of a miracle.

What resources have you used on your healing journey so far and how did you find them?

The Specific Carbohydrate Diet quickly led me to The Paleo Diet by Loren Cordain and the work of Chris Kresser. This was just when Practical Paleo by Diane Sanfillipo came out and a bit before Sarah Ballantyne had written The Paleo Approach with a detailed description of the Autoimmune Protocol.

It was both so reassuring and so freeing to find a collective of people whose work and research reflected my experience. It was the first time in the decades I had been living with chronic illness that, even though I was still housebound, I no longer felt alone.

Surprisingly, my biggest resources were tools I had spent four years developing as I earned my Master’s of Architecture: research, testing and tracking, building a supportive team, and breaking complexity down into easier problems, and generally geeking out. In architecture school, I was taught to think holistically and that nothing exists in isolation. I knew this to be true for my own body. I felt that all of my symptoms were somehow connected, and that my present health crash was not unrelated to my childhood illnesses. Because of my training, it was easy to think of my chronically ill self as one big design problem, and thinking of myself in that way made it feel like there was something I could do.

When you’re living with autoimmune disease, things often feel out of your control. So, I learned how to spot the areas of my life that I did have control over. Instead of thinking as my body as my enemy, I began teaching myself to think of my body as my friend.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

I went through an almost two-decade long process of trying to get a diagnosis which was problematic in and of itself. Because my labs were within normal ranges and my imaging showed abnormalities but nothing really wrong, my doctors were skeptical. It was easier for them to say that it was all in my head. Their ready answer was antidepressants and antianxiety medication. But this was not a solution, this was exactly part of the problem. Without a proper diagnosis, of course my mental health was suffering as well.

My doctors were ready to dish out over-the-counter and prescription medication. Most of these came with their own side effects, and none of these solutions got to the root cause of what was going on. I was taking over a dozen different medications a day when it was recommended that I take steroids and/or look into a medicine for cancer patients. And my doctors were really upfront with me, I might end up in a wheelchair and without the ability to speak anyways.

It just made no sense to me. I wanted answers, not bandaids. I wanted to do something, not just take pills and hope for the best. Because we don’t live near a metropolitan area (and at this point, virtual health care was not really a thing), I opted to go it alone. I was without a practitioner for over two years. It was during that time that I worked with the nutritionist and found an amazing health coach who helped me tap into my own skills and strengths as I problem-solved on my own. I eventually found a local naturopath who was able and willing to take the time to listen to me and work alongside me. More recently, I’ve also been working with both a counselor and acupuncturist, each supports my healing in different ways.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

As corny as it sounds, each birthday past 30 and wedding anniversary has been a true gift. I love that I’m old enough to be getting gray hair!

Once it was clear that my healing process was underway, I was often asked by friends, family, and acquaintances how I was able to make such a big transformation. After many conversations with people navigating their own paths, I decided to become a health and wellness coach so that I could provide other people struggling with living with autoimmune disease and chronic illness the listening ear that I was so lucky to have found. My colleagues are incredibly thoughtful people with their own similar stories. That I can turn decades of struggle into support for others gives meaning to what I went through. I absolutely love supporting people as they discover the changes they can make in their lives to alter their health trajectories.

And now that my motor skills have improved greatly, I’m able to work with my husband in our art studio. This is the dream we created when we first got together well over a decade ago. That I’m now able to reconnect with that core part of myself means so much to me.

To learn more about Dana’s healing journey check out her website, or follow her on Instagram.

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer, content coach and yoga teacher from Seattle. Grace designs websites and creates content that capture how great her clients are so they can effectively and authentically share their expertise with the world. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes social media publishing. She splits her time between living in Seattle with her friends, Minnesota with her family, and Asia, where she likes to spend the winter months. You can find out where she is now on Instagram and learn more about how she balances work and travel on her website, Said with Grace.

1 comment

  • Andy Koenigsberg says

    Dana –

    Although your mom and I have discussed your struggles over the years, I truly had no concept how close you were to the brink, or how complex the path was to your new life was. Thank you for sharing this interview. You are truly extraordinary.

    Andy

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