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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.
At 27 years old, Brooke had convinced herself that frequent cross contamination was the reason she was still having such unbearable celiac symptoms. What did you do wrong today? she would ask herself, wracking her brain for possible slip ups. It wasn’t until a Mayo Clinic doctor diagnosed her with celiac refractory disease and steered her toward the AIP that she realized going gluten-free was just the first step. Her turnaround is so encouraging!
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I went years with symptoms getting progressively worse. I was initially diagnosed with celiac disease in 2018. My symptoms were still persisting. I was having symptoms such as distention in my abdomen, diarrhea, vomiting, cold sores, rashes, irregular periods, joint pain, headaches, to be honest there are probably more that I am forgetting. I was consistently told that cross contamination was the reason these symptoms were persistent. In 2019 I went to Mayo Clinic to get a second opinion on my symptoms/diagnosis. In August of 2019 I was diagnosed with celiac refractory disease.
Describe what the lowest point on your health journey was like.
My lowest point of my health journey were the weeks leading up to going to Mayo Clinic and while I was at Mayo Clinic. As I was crying I told my doctor at Mayo that I was 27 years old and this is not how I pictured my life. I told her I was in pain every day and was sprinting to the bathroom terrified I wasn’t going to make it. I was frustrated because I felt homebound. The only thing I could focus on was the radiating pain in my abdomen. I was struggling to keep up at work. I work in schools and remember walking down the hallway taking deep breaths so I wouldn’t vomit. The way I was living was making me feel so depressed because even though I had support I felt so alone.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
At first I would question myself and think, okay… what did you do wrong today? What did you touch or eat? But, I became very conscious of my every move and I knew I was doing everything by the book. I had changed out all my dishes, pots and pans, utensils, and all cosmetics. I was only eating at home because I knew eating out wouldn’t end well. I still felt HORRIBLE. Every. Single. Day. I would call my mom crying in pain almost daily. That was my tipping point. I would do ANYTHING to make it all go away.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
Previous to my final diagnosis of celiac refractory disease I worked with a dietician/nutritionist at Mayo Clinic. At the start of the meeting she took out a packet all about gluten-free diets. It took everything in me to not roll my eyes. As we started talking she realized I knew, and I was doing “all things” gluten-free by her book. I looked at her and said “I am in pain every day. If you were me, what would you do? Because if you give me a diet I am willing to do it.”
That’s when the conversation really started taking a turn and we started talking FODMAP, diary-free, oat-free and gluten-free. We talked about specific portions sizes I should eat, what foods to avoid. Later I realized I was doing the AIP diet. I went home and immediately started this diet. A week later Mayo called with my diagnosis of celiac refractory disease (ding ding ding, the gluten-free diet wasn’t enough to heal my gut)! With the diet I started feeling better within days and felt like a new person within weeks. I am also working with Mayo Clinic on steroid treatment to accelerate my healing process. However, even if I veer off my diet I notice a drastic increase in symptoms. Specifically distention in my abdomen and nausea.
What resources have you used on your healing journey so far and how did you find them?
The majority of resources I started with were provided to me from the Mayo Clinic. I ordered a few cookbooks off the bat because I knew I would get bored of eating the same thing all of the time. One of my favorites is The Gut Friendly Cookbook by Alana Scott. I also utilized other people’s experience from social media to help guide me on some tips and tricks. I did a substantial amount of research on my own about what products were best, etc.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
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?
I am currently planning my wedding, which has brought me so much happiness. My fiancé is one of my biggest supporters. He puts so much thought into everything he cooks for me. We recently bought a home and we have been working on a few DIY updates. I also find a lot of joy in my work. I work with students on the Autism Spectrum and their progress means the world.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.