AIP Stories of Recovery: Anna’s Recovery from Limited Scleroderma and Raynaud’s

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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.

When Anna was diagnosed with celiac disease in 2009, she thought she’d finally gotten to the bottom of her frustrating symptoms. But, like so many of us, Anna soon discovered that she had not one, but three additional chronic conditions that were wreaking havoc on her body. Today, she’s constantly grateful to have reached a place of balance thanks to medication and lifestyle changes. As you’ll read, Anna doesn’t shy away from discussing the challenging social and emotional aspects of living with chronic illness. 

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

My autoimmune journey started in 2009 when I was diagnosed with celiac disease. I struggled with classic celiac symptoms like gastrointestinal issues, anemia, headaches for two years before I was formally diagnosed. As soon as I cut gluten from my diet I saw an almost immediate improvement in symptoms.

Then in 2016 I was diagnosed with limited scleroderma with Raynaud’s and a cross diagnosis of chronic muscle inflammation. For over a year I struggled with some classic scleroderma symptoms including joint pain, inflammation and chronic fatigue. For a while I attributed the symptoms to chronic stress, but when I lost 12 pounds in nine months I knew something was wrong. I am lucky that the team of doctors at the University of Iowa Hospital & Clinics were able to quickly diagnose me with scleroderma, as I know a lot of patients go years without a formal diagnosis. It has been almost two years and I finally feel as though I have my medication, diet and health plan under control.

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

The lowest point in my journey was in 2016, which also happened to be the year I was diagnosed with scleroderma. I was under a tremendous amount of stress due to my job and was in a very poor place mentally. The diagnosis just added to the stress. My body was a mess and I didn’t understand why or how it got the way it did. I blamed myself for everything and assumed that I had done something that had resulted in me getting diagnosed with this chronic illness.

When I was first diagnosed I was told I needed to gain 7-10 pounds. When I shared that with others I would get comments like, “I wish I needed to gain weight,” or “You are so lucky.” When in reality gaining those 7-10 pounds was incredibly hard for me to do. It’s hard to explain to people that your body is attacking itself. While I knew that the comments were not meant to hurt me, I felt completely isolated from everyone around me.

I started seeing a counselor who helped me unpack the struggles of the year and helped me to see that a chronic illness doesn’t define the person that I am today. I learned a lot of strategies to handle the daily stress and anxiety associated with having a chronic illness.

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

When I got diagnosed with scleroderma I felt like I lost all control of my life. The diagnosis in many ways made me feel like I had failed. The tipping point for me was realizing that I needed to take some ownership and control of my own life. I was in a stressful job and was not taking care of myself well. In many ways I was failing my body but this was my opportunity to face those challenges head on.

I began researching about autoimmune diseases and treatments and that is when I came across the autoimmune paleo diet (AIP) and saw how much it had helped others. Since I had no control over my medication or what my doctor was prescribing as part of my health plan I thought that changing my eating lifestyle was one thing that I could do to be in control of my life. Changing my eating habits allowed me to take ownership of my condition and my healing which for me was the first stepping stone to accepting that I suffered from a chronic illness.

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

I purchased a couple of autoimmune paleo books and started making recipes for there. It was pretty new to me and I was pretty overwhelmed with all the things that were on the “do not eat” list. For me, cutting dairy from my diet was a huge deal. I never put it together that dairy was causing the joints in my hands in inflame, but after not eating dairy for two weeks my hands felt so much better. I also cut caffeine and began to sleep better and feel less fatigued.

For me however, the real encouragement came at my six month follow-up appointment with my rheumatologist post diagnosis. The medication I was (and still am) on (mycophenolate) was helping to control the antibodies in my system and had already slowed the progression of the disease. But my doctor noticed beyond those results that my joints seemed less inflamed and I had gained weight. I told him I had started AIP a couple months prior and he said, “Whatever you are doing, keep doing it.” Well that was all the motivation that I needed to keep following the diet plan.

It has been about one and a half years since I started following AIP and it has made a huge different in how I feel. I have learned that food really does have a profound impact on how you feel. If you fuel your body with good food, you will feel good. Today, I follow the autoimmune paleo diet and eat no processed food. Sometimes it’s hard and I get off track but instead of freaking out, I just jump back in and keep going.

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

I started online looking at books and websites. Some of those included Autoimmune Wellness, Unbound Wellness, Against the Grain and The Autoimmune Paleo Cookbook. Overtime I found people on Pinterest, Instagram and online that were following similar protocols. I think the various resources really helped me to understand what AIP was and then from there I adapted and changed things around to fit my individual needs. I’ve learned that every person is different and how I follow AIP may be different from others.

The community around Instagram for autoimmune paleo and people with chronic illness has really helped me to try new recipes and promote a healthy lifestyle with a chronic illness. I launched a blog in 2017 (pureeatsblog.com) to share my own experiences with wellness and AIP.

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

Overall, I have followed the plan that my rheumatologist team has set for me. I was prescribed a couple of medications that I had various reactions to and had to be taken off of them. We tried some other medications that seemed to work better and have stuck with those. I am not a huge fan of prednisone (due to the side effects) but my doctor and I talked about the pros of the medication and agreed that for a short-term it would be worthwhile. I am lucky that I have a good relationship with my rheumatologist and we discuss the pros and cons of adding or removing medications to my health plan. I feel like we are a team in managing my chronic illness, which I think is important.

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?

My faith in God has been incredibly important in my understanding of and in learning to accept the chronic illnesses I have. I lean on my faith a lot when I feel overwhelmed and am incredibly blessed that I have some amazing people in my life who pray for me and would do anything to help when I need it. That’s been huge.

Lots of things bring me joy. I love the Olympics, almond milk chai tea lattes, brunch, mindfulness activities, yoga and the outdoors. Working out and hiking has become a big part of my wellness practice and I am excited to climb a 14er (mountain over 14,000 feet) in July with my brother.

Check out Anna’s recipes on her blog, Pure Eats. You can also keep up with her on Instagram and Twitter.

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, and the Blog/Social Media Director for Autoimmune Wellness. 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. She also shares recipes and explores how to live her most vibrant life on her blog.

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