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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 email us through the contact form.
Meet Julie! Julie literally woke up with severe condition and spent months in pain and with no hope of it improving, despite taking huge doses of powerful drugs. Her primary AI is autoimmune-driven chronic idiopathic urticaria and angioedema , a condition that left her at times unrecognizable due to hives and swelling. Julie did not accept the answers handed to her by the conventional system though and instead used diet and lifestyle to overcome her health struggles. Her recovery is particularly dramatic, because it is visible.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I woke up one morning in April 2013 (after having a high fever and stomach cramps the night before) and discovered red, itchy bumps on my knees. The next day they showed up on my arms, so I called my doctor. My original diagnosis was acute hives, thought to be an allergic reaction to the antibiotics I was taking for a sinus infection. I went on Prednisone and the hives went away, but flared up again after I tapered off the steroids. For the next six weeks, I went through a cycle of steroid bursts and hive flare-ups, with each flare-up worse than the last. I would wake up every morning with hives all over my body. The itch was so severe that it was painful and all consuming. No creams provided relief, nor did high daily doses of four different antihistamines.
In late May, I started to experience seemingly random swelling of my hands, feet, lips, and eyelids. I would also develop severe hives and swelling anywhere on my body that was subject to sustained friction (e.g., from backpack straps or my shoes). I had been an active person and was training for a triathlon, and one day my feet swelled so painfully after a run that I could barely walk without assistance. I missed a lot of work because I was too embarrassed to show my swollen, red face at the office. I went from being a healthy, active young woman to being afraid to go outside for a walk.
Finally, I saw an allergist/immunologist who diagnosed me with chronic idiopathic urticaria (hives) and angioedema (swelling). “Idiopathic” means that there is no apparent explanation. When I asked my doctor why this would suddenly start happening to me, his response was that I “might just be a hivey person.” I didn’t find this answer acceptable and started researching everything I could about my condition. I was desperate for answers. In the meantime, my doctor put me on a daily dose of Prednisone. The side effects of all the drugs were terrible – I had trouble sleeping because of the steroids, and when I finally did fall asleep, the high doses of antihistamines gave me nightmarish hallucinations. Eventually, in July, my test results led my doctor to conclude that my condition was “autoimmune-driven.” I was told it was possible I would have hives for years.
Describe what your lowest point with your health journey was like?
There is an injectable drug called Xolair that has been used for about a decade to treat asthma, and at the time was in the process of being evaluated by the FDA for treating chronic hives. Because it had not been approved at the time (it has since), my insurance company wouldn’t cover the drug, and its cost was prohibitively high – about $800 per shot. During one appointment with my immunologist, he told me they had an extra vial of Xolair “lying around” that they would administer to me. I was the last appointment of the day, however, so they told me to call later in the week to set a time to come in for the injection. When I called several days later, I was informed that the doctor had changed his mind and that giving me the Xolair was “not the best course of action.” I was completely and utterly heartbroken. At this point I was deeply depressed and realized that I had been hanging all of my hopes on this unattainable drug. I started to prepare myself mentally to have my condition for the rest of my life, but it seemed unbearable. I was terrified of the future, when I should have been excited – my husband and I had just bought our first house and I had a great job. But the daily pain consumed me and itching had become my new reality. I felt alone even though loved ones surrounded me.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
The tipping point was probably the same as my low point. I decided that Western medicine was only going to continue to fail me and if I was going to get my life back, I had to take matters into my own hands. My years of eating a poor diet, not getting adequate sleep, working out too hard, and not managing my stress had caught up to me, and it was up to me to turn things around, start listening to my body, and give it what it needed to heal. This was in the fall, and I couldn’t even spend time outside in the cold without my face swelling to the point that I was unrecognizable. I refused to accept a life where I was afraid to go outside, a place that had always been restorative and inspiring to me. I refused to accept that I would have to take steroids for the rest of my life just to function. I decided to start seeing a naturopath and at about the same time was introduced to the Whole 30 and the Paleo diet by a coworker.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
I started my first Whole 30 on the Autoimmune Protocol in October 2013. I also took an ALCAT food sensitivity test at the recommendation of my naturopath, and the test confirmed that I had a moderate or severe sensitivity to foods prohibited on the AIP such as wheat, eggs, soy, and nightshade vegetables. Unfortunately, I also learned that there were some “safe” foods that I could not tolerate, such as beef and onions. It was a challenge at first, but I was ready to try anything. Within two weeks on this protocol, my “good days” began to get better and my “bad days” were not as bad. One morning I woke up with no hives, which hadn’t happened in months. I had my last ever bout of angioedema about two weeks into the 30 days. I eventually found that I could tolerate grains like corn, rice, and oats, and slowly started trying to reintroduce other foods. After a few months I could eat eggs again, but I still would have a flare of hives if I tried to eat nightshade vegetables or nuts/seeds. By early January 2014, my hives were so small I couldn’t even tell if they were really hives. By the end of January, I was in complete remission. I slowly began to taper off the steroids I had been on for six months and did not have a flare-up. By early May 2014, I was finally off steroids completely. In July, when tomatoes came into season in my area, I slowly added them back with success – a food I hadn’t enjoyed in nine months.
What resources have you used on your healing journey so far and how did you find them?
The first resource I was introduced to was the Whole 30 Website and the book It Starts With Food by Dallas and Melissa Hartwig. I searched “autoimmune paleo” online and discovered this blog. The recipes and words of support were an indispensable resource on my journey. I also found a wealth of information and recipes on Pinterest (search “AIP”) and still use it regularly. Finally, I stumbled across an online support group on Yahoo Groups for sufferers of chronic hives. This group helped me to feel less alone in my struggles, and I also discovered a protocol for a low-histamine diet, which provided relief for many in the group. I incorporated aspects of the low-histamine diet into my own protocol and found that it helped in my recovery.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
My doctor did not suggest any treatments that I rejected, but he did reject my repeated assertions that my diet and lifestyle changes were responsible for my dramatic improvement. Despite this, my view has been permanently changed by my experience. I continue to avoid processed foods and gluten and limit nightshades; I listen to my body and try to take care of myself. Instead of covering up my symptoms with medication, I am now continually tweaking this holistic approach to improve my physical, mental, and spiritual health.
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 experience with a chronic, debilitating illness taught me to truly savor and be grateful for the simple pleasures in life. Now, I feel true joy when I can take my dog for a walk and enjoy the fresh air and exercise without fear of pain and itching. I revel in the taste of nourishing foods that I know are making me healthier. And most of all, I look to the future with great optimism, instead of trepidation.