AIP Stories of Recovery: Jarrett’s Recovery from Primary Sclerosing Cholangitis and Alopecia

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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.

Jarrett’s story is nothing short of incredible. After being diagnosed with one of the rare autoimmune diseases whose only conventional treatment is an organ transplant (primary sclerosing cholangitis), Jarrett spent years withering away and losing hope that he would ever recover. With his heartfelt writing, Jarrett takes us through his journey from near-death to 95% recovery. The impact of AIP on his condition was not immediate but it was miraculous. 

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

My first clue that something was wrong came in 2008, when routine lab work for insurance policies revealed elevated liver enzymes. Around this same time I noticed a patch of missing hair on my chin and the back of my head. I was quickly diagnosed with alopecia, but my doctor didn’t know what to make of my liver enzymes. He told me not to be overly concerned, that, “It’s just a number.” After all, I was otherwise what is considered to be a “healthy person”. At the time, my wife and I were living in a small rural town, and expecting our first baby.

In 2009 I suffered an acute gallbladder attack. A scan revealed my gallbladder was full of infected sludge, resulting in an emergency cholecystectomy. This marked the beginning of my downward spiral. In 2012 my family moved to Denver, and I began moving through an endless series of skeptical and stumped doctors, and endless tests named with every conceivable acronym. 2 years later I was finally given my diagnosis: PSC.

PSC, or primary sclerosing cholangitis, is an autoimmune disease that causes inflammation in the body’s bile duct network. Bile ducts carry the liver’s toxic output out of the body. Without them, the liver will become saturated, and will fail. Liver cancer, bile duct cancer, and cirrhosis, are some of the diseases associated with PSC. There is a strong correlation between PSC and Ulcerative Colitis. Most PSC patients are listed on the liver transplant waitlist within 15 years of diagnosis. Many of those who receive the gift of liver transplant experience a relapse of PSC, and attempt a second –and sometimes third or fourth–go on the waitlist. My relief of having a solid diagnosis was quickly overshadowed by the danger of my situation.

My journey to diagnosis took 7 years.

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

In 2014, my health had declined so badly that I reportedly had the appearance of a chemotherapy patient. I was skeletal, having lost over 40 pounds in weight. My hair had almost completely fallen out, and the sparse patches that remained were turning white. I rarely slept more than an hour or two at night. It is difficult to describe my overall feeling during this time; terrible, miserable, a shadow of myself. Coworkers would stop me in passing and blatantly ask me if I was okay. A supervisor who was a family friend grew alarmed and called a relative to ask about my wellbeing. Back in my home town, word had spread that I was in trouble. And so during one community basketball game, the announcer lead the crowd in prayer for me.

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

Doctors told me that there is no cure or treatment for PSC. They told me there is no connection between my two autoimmune diseases, PSC and alopecia. They told me in so many words that I should simply try to enjoy life while I wait for transplant…enjoy life as I wait for my organ to die. I asked about making dietary changes such as going gluten free, and was repeatedly told that it was a waste of time and effort, that it would offer no benefit. My wife and I were angry and distraught by their resignation, and we began to feel a grave distrust toward the wisdom of the medical establishment. And I decided that I wasn’t going to accept the “do nothing” attitude, I was going to try anything and everything I could to heal myself.

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

My first effort in healing was to eliminate gluten. I had all of my life had a sensitive stomach, with regular and unexplained episodes of night-time vomiting 2-3 times a month. Up to this time, I had never considered how strange it really was. When I stopped consuming gluten, the vomiting stopped in its tracks, and in the 5 years since, I have not had one episode. This was my first clue that I needed to further explore my diet and nutrition. After 6 months I was so excited by my results that I eliminated dairy, which led to more overall improvement. I began to pay close attention to what I ate, and how I felt after eating. I was surprised to find that baked and mashed potatoes caused an almost immediate GI upset. I had always thought the potato was a safe and bland food. “What sort of person can’t tolerate a potato??” It was almost comical. My wife did some online searching for potato sensitivity, discovered the Autoimmune Protocol, and a million glorious light bulbs lit up. Within a week we were on board the AIP train and cooking with the Autoimmune Paleo cookbook.

After one year of diligently following AIP, I began to gain weight. My general appearance improved continually, as did my sleep. After 18 months, my hair began to fill in, and my lab work improved. Now, 2 years later, my labs have completely normalized for the very first time in the 7 years of this journey. My most recent scan showed NO sign of PSC in my bile ducts or liver, and my doctor believes I’m in full remission. I’d estimate that my hair is 95% grown and still going.

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

The Autoimmune Wellness site and community has been the single most helpful resource in the years since we started. It was my beginning point, and continues to be central to my healing journey. Thanks to the excellent resources and efficient materials I accessed early on, AIP cooking is automatic to me, something that feels natural and effortless.

I also frequent Empowered Sustenance. Lauren’s story of healing and ulcerative colitis has been a constant inspiration in the face of negativity and skepticism.

Costco is the reason my family can afford to eat high quality whole, organic foods without needing a second job to pay for it.

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

I rejected the “do nothing” treatment plan. I also rejected the steroid treatments for my alopecia against the advice of my doctor, based on amateur research indicating it was a terrible idea.

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?

The common saying is: Life is short, eat the cake. But does life necessarily need to be so miserable that we need to escape into a slice of cake? And what if that cake is the thing making your life miserable? Or shorter? Find things that bring you joy, which do not also eventually destroy your joy.

I live in the beautiful Rocky Mountains of Evergreen Colorado, with amazing hiking trails within a 5-minute drive or walk. This is how I most love to recharge myself. I also enjoy playing guitar and woodworking, and spending as much time as possible with my wife and three amazing, beautiful daughters.

If you would like to learn more about Jarrett, you can find his frequent cameos on his wife’s 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.

7 comments

  • Tracey Boden says

    This article appeared on my newsfeed today and the timing is perfect. I do not have PSC but last year I tested positive for PBC specific antibodies, a similar condition that destroys the small bile ducts in the liver. My liver function has been normal until my most recent test a week ago. I have been on AIP since the summer because I have Lichen planus, lichen sclerosus, gluten and dairy intolerance and other symptoms, joint and muscle pain etc. that have been largely ignored by my doctor. I felt very low this week because even though I have felt so much better in myself since starting AIP, the fact that my LFT’s appear to be going in the wrong direction made me feel like giving up, BUT, thank you so much for this article, it has given me hope again and the motivation to continue with it. Just what I needed to read today 😊

  • Lauren says

    Jarrett, your determination and healing is inspiring, and I’m touched to hear that my site encouraged you.

  • CONNIE HAGEN says

    Tracey
    I am on the verge of being diagnosed with PBC after recent blood work that showed a positive result for a smooth muscle test as well as elevated liver enzymes. Wondering if you had any symptoms prior to diagnosis, if your on meds now and if you found any relief? I am extremely fatigued when doing any activity and end up falling asleep whether i want to or not and my arms and legs feel weak when i do anything. Also did they do a liver biopsy to stage the disease? Sorry for all the questions just trying to figure this out as there seems to be no answers for the fatugue.
    Thanks
    Sending healing prayers to you
    Connie

    • Tracey Boden says

      Hi Connie
      I have tested positive for PBC specific AMA ‘s and ANA’s but because my LFT’s were normal I was not given a diagnosis, I just have LFT’s every 6 months. I saw my doctor a year ago because I was suffering from fatigue and joint and muscle pain. She ran lots of blood tests and the Autoantibodies were positive. My most recent LFT’s had one abnormal result but my doctor is not concerned so I still have not seen a specialist or had any diagnosis as I don’t have PBC until my Liver stops working properly! I am hoping that AIP will stop that from happening. Everything I read tells me they don’t do biopsies anymore, it’s diagnosed with blood tests, I am in the UK, it may be different in the US. I had cut out gluten a couple of years ago due to fatigue and GI issues and found that my lichen planus and lichen sclerosis improved dramatically but then after a year or so the fatigue came back with the muscle & joint pain. I did AIP strictly for 4 months and the fatigue went, my energy levels increased dramatically, it helped all those symptoms. I don’t know if it’s a separate issue or not, my hands, wrists, feet and back are often painful and at the moment one of the joints is swollen, I’m not feeling great but it’s been since I started reintroductions, with very little success so far, I need to go back to AIP strictly. I am hoping my doctor will send me to a specialist but as it stands the only real help I have had is from a friend who is a Homeopath and Nutritionist and this website. I hope your treatment helps you, it seems to have dramatically changed the prognosis for PBC patients in recent years and if you haven’t started AIP then I would strongly recommend it, all the best 😊

  • Elizabeth says

    I have also been diagnosed with a rare liver condition – Primary Biliary Cholangitis (PBC). Thank you for sharing your experiences. Mine have been very similar with severe symptoms and near-liver failure beginning in 2013. AIP has been a wonderful help, although I have allowed myself to eat things lately that leave me with mild itching and gastro upsets. After reading this I feel empowered to return to eating foods my body needs to really thrive and heal. Thank you very much!

  • S R says

    Thank you for sharing your story Jarrett. My partner was diagnosed with PSC 7 yrs ago. Some similar experiences, nighttime vomiting included. All my research has convinced me of the power of diet in autoimmune diseases, but your story is the first success story I’ve heard with PSC. God bless.

  • Davide says

    I have PSC. My question is when you sya no sign of PSc on the mrcp, did you ever have strictures visible on mrcp? As far as I know once the inflamed spot in the duct is active for years the inflamed location builds scar tissue ans so the duct is permanently restricted in the location.

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