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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.
Stella’s transformation from illness to health is nothing short of remarkable. Not only had she lost nearly 50% of her hair to alopeica areata, but an undiagnosed Crohn’s disease flare had left her colon nearly completely obstructed. Steroids helped Stella’s body return to balance, but she thanks the AIP for getting her through the treatment without side-effects. And just months after narrowly avoiding surgery and a colostomy bag, the results of Stella’s colonoscopy were jaw-dropping.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
In May 2015, I was diagnosed with Crohn’s disease after 10 years of chronic gastrointestinal distress that had consistently been mistaken as IBS. It took a serious flare in which my bowel almost completely closed and perforated to force my doctor to reconsider. He couldn’t even push a pediatric endoscope through my colon! Alongside Crohn’s I had also been suffering alopecia areata, an autoimmune condition in which the hair follicles are attacked, forcing the hair to fall in random patches and leave behind circles of complete baldness throughout scalp. I had experienced this repeated hair loss and regrowth for about 5 years with the help of corticosteroid scalp injections but eventually they stopped working for me. The patches then began growing so quickly it looked as if I might be heading for alopecia totalis.
Describe what the lowest point on your health journey was like.
At my very worst I was dealing with 50% hair loss due to large patches of alopecia areata and I was almost completely incapacitated by severe abdominal pain caused by Crohn’s disease. I spent the majority of my day on the toilet with chronic diarrhea and my weight was dropping quickly. My knees and ankles were swollen, very stiff and painful to move — this was arthritis brought on as a symptom of Crohn’s disease and I could barely walk unaided. My sleep was disturbed by night sweats and my abdomen was so distended that I couldn’t button up my trousers (despite the weight loss) forcing me to wear long t-shirts just to cover my open zipper.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
My Crohn’s diagnosis was the absolute tipping point because I was informed that the stricture in my mid-sigmoid colon was so inflamed I was on the verge of needing surgery to prevent complete obstruction. The doctors were unsure whether to operate immediately or start me on a course of steroids. We decided on the steroids and this treatment was unavoidable due to the severity of my condition but I was also informed that going forward I would need an anti-TNF (immunosuppressive) biologic drug called Infliximab to help prevent any future flares. I knew that the side effects of such a drug were horrid and I felt determined not to allow it to be my fate; I hated the idea of living on drugs indefinitely so I set about finding a dietary solution.
Even before I flared with Crohn’s, my emotional struggle with alopecia was a tipping point in itself. I March 2015, I created a YouTube video in which I shared all of my bald patches and talked about my experience with AA. In the video I pledged to tackle my condition with dietary changes after having read The Wahl’s Protocol but I was totally thrown off balance by the pain of Crohn’s disease that I just couldn’t endure the diet — all I wanted was the comfort of chocolate. As soon I received my Crohn’s diagnosis I knew I had to take my food choices seriously in order to treat both problems.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
Of all the experiments I made with my diet, the Autoimmune Protocol was the one that set me on the clear path to healing. I began AIP at the same time that I began my steroid treatment for Crohn’s which of course dramatically improved my condition but I could tell that it wasn’t just the steroids alone. In the entire 8 weeks of Prednisolone treatment I didn’t experience a single side effect and I attribute this to the healthy diet that AIP granted me. Moreover, it was the absolute absence of gastrointestinal problems, joint pain and fatigue even weeks and months after the steroid treatment that made it clear that something else was working for me — AIP all the way! Not to mention the fact that all of my hair was growing back and there wasn’t any sign of new patches! My doctor was stunned that I hadn’t relapsed but still insisted that I inevitably would — that’s when he started pushing me for the anti-TNF drug. I’ll get to that in a moment…
What resources have you used on your healing journey so far and how did you find them?
For a number of weeks before I went full-on strict AIP I had been experimenting with other diets. I started out with the Candida Diet (discovered in a Google search) which is a ZERO sugar diet while also taking anti-fungals (grapefruit seed extract) and lots of probiotics in the form of live-bio yoghurt and kefir. From there I read other online articles about similar diets and moved to a combination of GAPS and the Specific Carbohydrate Diet (SCD) which are almost paleo with the exception of homemade bio yoghurt but are definitely not like AIP because lots of typical allergens and inflammatory foods such as nuts, eggs and nightshades are still included. I think I did a lot of the hard work with these prior diets in terms of clearing out bad bacteria and preparing my gut for change; I certainly had the symptoms anyway — my candida die-off experience was awful! Even though during this time my hair had probably begun growing at the root and wasn’t yet visible, my symptoms of Crohn’s disease persisted until I embraced the Autoimmune Protocol which I found through this blog! Mickey and Angie’s stories touched me and it just made so much sense to eliminate foods like aubergine which had always been problematic.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
As I mentioned earlier, my doctor was determined to treat me with Infiximab to maintain my remission. I insisted over and over that I was fine managing my health with diet. I didn’t want the drug because it compromises the immune system leaving you susceptible to infection and worse than this, puts you at risk of developing the blood cancer Lymphoma! My doctor eventually frightened me into submission. He warned of the weakened and dysfunctional scar tissue in my colon left behind by the stricture and 10 years of inflammation, as well as the fistula, the risk of needing if I were to flare again.
My first treatment was fine. No side effects, no reactions. I went back two weeks later for the second infusion and later developed signs of an allergic reaction: difficulty breathing, chest pain, sore throat, joint pain, diarrhea, stomach pain, fatigue, sinusitis and random food allergies. I very quickly got an appointment with the hospital consultant, who after discussing my symptoms agreed he was uncomfortable with continuing Infliximab treatment, or any other drug for that matter, for fear of a serious allergic reaction. He then said the best thing ever. Given that my recent blood results showed no inflammation and I had no Crohn’s symptoms, he wanted to perform another colonoscopy to see if I really had healed so well on the inside. The result was incredible — no inflammation, NADA!! He concluded that I was free to go! No drugs! Just “Keep up the good work and I’ll see you for a check-up in 6 months.” I was, and still am, the happiest girl alive! AND I’ve still got my hair!
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?
Last year feels like eons ago! Just being fit and well is enough to make me happy. Not hiding from social activity, not fearing total baldness and not experiencing chronic pain is a gift. There are so many things that bring me joy right now such as my blog, Whole Earth Life, which I set up to help other people suffering with autoimmune disease, particularly alopecia areata. It feels great to know that sharing my experience and recovery is a huge comfort to those who are going through the same thing. I’m also studying to become a Nutritional Therapist to improve upon my blog and further help people in need — I’m enjoying every minute of being a student again. And finally, what brings me such great joy right now is the fact that I’ve moved on from AIP. The protocol served me well in healing but it doesn’t always have to be lived forever. Some people find it better allows them to manage their symptoms but I’ve found that I can still thrive without it. I now enjoy a gluten-free diet, also free of refined sugars, chemicals, additives, preservatives and other toxins but enjoy the pleasures of grains and dairy once again. I am so grateful I discovered AIP and that it has enabled me to reach this point. I hope you find it just as beneficial.
Read more about Stella’s journey on her blog, Whole Earth Life.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.
So crazy how much eating the right food can change. Thank you for this inpirational story. I have a hashimoto and am in the beginning of my journey ☺️
I’m in the beginning of my journey with Hashimoto’s as well….curious how you are doing…
So happy to have found this website….knowledge is very empowering!!
Thanks so much for yet another encouraging story! This one is just amazing – I have Hashimoto’s but reading autoimmune success stories of any sort really helps me keep going.
This is awesome and so uplifting. I’m beginning my journey on the AIP this week. I have had crohn’s for almost 2 years (November 2014 was when I was diagnosed) and am 8 weeks pregnant. I need to get myself healing on the inside so that my baby can be healthy as well! Thank you for your stories.
Wishing you and your baby luck Amber!
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I have Alopecia Totalis which began with Areata in 2014. I’ve started already on the AIP diet and hope I will see changes in the coming weeks ahead. I do believe that once the body is healed it possible to put this autoimmune disease into remission which you then can have control over the symptoms. I hope I’m on the right path to recovery.
Wishing you luck Patrick!
Have you noticed anything since you started the AIP? I have Alopecia Areata and it’s going to totalis. The hair is just falling off, 5 % left now.
I’ve been on AIP diet for nearly 3
months now and no regrowth. More hair is falling out. I’ve very little body hair left. I’ve got no scalp hair, eyelashes, eyebrows and the odd facial hair that’s all. I’ve been seeing a private Doctor who has confirmed I’ve got candida overgrowth in the gut as I had a stools test done. Since being on antifungal treatment for about a month now there hasn’t been any hair regrowth at all. I am starting to lose hope my hair will grow back now. Can anyone help at all?
Hi Patrick and others,
I have full blown alopecia universalis, and have been committed to AIP for the last six months, so I’m certainly losing hope. Any updates on your situation?
Hi Fredrick and Patrick! I have been suffering Alopecia Areata in October 2018. It eventually became Alopecia Totalis. Since that time my hair has been growing back in patches but then completely falling out again, almost in exactly the same pattern it began. I am surprised to hear of your experience on the AIP diet. Personally, I have been excluding gluten and dairy from my diet. It doesn’t give me much hope to begin on the AIP diet especially because it is so restrictive.
I would love to hear more from anyone suffering alopecia or related recovery stories?