Angie’s Healing Story

You might find this hard to believe, but even though I write for a living, it’s quite difficult for me to tell my health story. As you’ll read, my journey involves long overdue diagnoses and years of depression and pain, but also the mental and emotional toll of navigating the deepest part of my illness while living in West Africa. Heavy, I know!

These dark seasons are both painful to revisit and difficult to describe. It is very hard for me to tell parts of my story, because they are far outside the typical journey that most of us in the United States encounter. But, as I wrote in my very first AIP blog post back in 2012, “Vulnerability is key to storytelling.” The more of us willing to tell our stories openly and honestly, the more of us that can reach answers sooner on this road to autoimmune healing.

Childhood

Unlike my blogging partner, Mickey, I don’t trace my autoimmune symptoms back to childhood. In fact, if I had to choose a word to describe my upbringing in terms of health it would be “idyllic.” My family lived homestead-style in a one-room log cabin in rural Montana. We had a 1-acre garden, raised chickens and geese, and got our milk from a local farmer. My dad hunted and fished for our meat and my grandmother taught me how to cook from scratch.

It’s hard for me to say whether living this way had any impact on my autoimmune health. Maybe it kept my autoimmunity under wraps? I can’t know for sure. What I can say is that the “real food” lifestyle I live and write about today is deeply informed by the way I learned to take care of myself as a girl.

The First Signs – Lichen Sclerosus, Endometriosis and Celiac

It wasn’t until the birth of my daughter, when I was in college, that I began to see signs of what I now know to be autoimmune disease. While I was healing post-partum, I started to notice painful discolored patches of skin around my labia. WebMD didn’t exist at the time so, if you can believe it, I started looking up my symptoms in a medical encyclopedia. (Self-led healing from Day One!)

I was pretty sure I’d figured out what was wrong and I visited the OBGYN who had delivered my daughter to confirm. He diagnosed me with lichen sclerosus and sent me home with a steroid cream. What he did not tell me was that this skin condition is an autoimmune disorder, and that having one autoimmune disorder meant I could be susceptible to developing others. He didn’t give me any information about possible diet or lifestyle adjustments to consider, either (to be fair, the Autoimmune Protocol was not known at that time). The treatment seemed cut and dry so I didn’t ask too many questions and I didn’t follow up. As a single parent raising an infant, you can imagine how much free time I had (ha!), so I accepted my fate and moved on.

It was around this time that I recognized that my menstrual cycle was not normal and endometriosis started to creep onto my radar. After my daughter was born, I decided to go on Depo Provera, a birth control shot, both for contraception (I got pregnant while on the pill, so I was concerned about how that option!). Every three months I had a shot, stopping my periods, which seemed to manage the severe period pain I’d had since I was a teen. Looking back, that menstrual pain was a clear red flag for endometriosis, but at the time I hadn’t realized my pain was abnormal.

I stayed on Depo Provera for three years, during which time I never had a period. It’s for this reason that I didn’t more closely investigate my potential endometriosis; out of sight, out of mind. I also didn’t realize at the time, but the hormonal manipulation seemed to actually be contributing to lichen sclerosus. When my circumstances changed and I had to switch back to traditional birth control, my painful period symptoms returned – and started getting worse. But I’ll get to that later.

My digestive system underwent some changes after childbirth as well. The symptoms I had were low grade – constipation, feeling uncomfortably full, lingering nausea – and my doctor told me they fell under the umbrella of IBS. This was the first of many misdiagnoses on my way to learning I had celiac disease. At this time, IBS was considered a psychological condition caused mostly by stress. As a single mom going to school during the day and working at night, this made sense to me. I was prescribed over-the-counter medication, but my symptoms persisted for years. Low-grade digestive discomfort became my new normal.

Emotional Changes and Infertility

Meanwhile, exciting developments in my personal life were beginning to shed light on some of my deep-seated health issues. As I was working to finish my degree, I met my now-husband and we fell in love at first sight. It wasn’t long before we moved in together and started a happily married life. A few years later, we started trying for a baby, but nothing happened. For those of us that have experienced infertility, “nothing” can feel like the most painful thing every month.

After a year, we visited a fertility specialist who, after running multiple and expensive tests, concluded that there was nothing wrong with either of us. His best suggestion was that it might have something to do with my age. I was 28 at the time. Surprisingly, my husband was more upset with this answer than I was. He pressed the doctor, asking whether this might be a sign of a deeper health problem for me, but the doctor shrugged him off and we went home.

Amidst these discoveries, I was noticing some alarming changes in my emotional stability. Objectively, I could see that I “had it all:” I was in love, I had a good job, we had exciting plans for our future, and I lived in one of the most beautiful regions of the U.S. My daughter was happy, healthy, and deeply bonded with my new husband.

Still, there were many days when I couldn’t seem to “rally.” Something was wrong, but I couldn’t put my finger on it. When I did venture into a doctor’s office, the answers seemed to be in the vein of “quit worrying.” I felt awful about myself. Why couldn’t I be more happy and energetic? “These should be some of the most fulfilling years of my life,” I thought. It was like something else was steering my emotional ship, though. I chalked it up to all of the big changes and berated myself. My anxiety worsened.

Eventually we began seeking alternative therapies to address my inability to get pregnant. A naturopath suggested I try a cleanse to stimulate my reproductive system and my liver. The diet eliminated a long list of foods, which included dairy and wheat, and I remember feeling really good on it! That should have been a big clue!

The Move to West Africa

Shortly after I completed the cleanse, my husband received a two-year assignment in Guinea, a West African country (he does humanitarian aid work). We enthusiastically said yes and began to plan our move to Conakry, Guinea’s capital.

We had just two months to prepare for our posting, so as you can imagine, there was little time to think about anything else. My focus turned to our vaccinations, which we had to essentially take all at once. Guinea is one of the world’s least developed countries, so moving there required a laundry list. While I didn’t get acutely ill from any of them, there’s no doubt they sent my immune system into a frenzy. My fertility was the last thing on my mind, and the potential clue I could have found in the dairy and wheat elimination went unnoticed.

On March 9, 2009, we arrived at our new home in Guinea’s capital city, Conakry, and I discovered what it meant to live in an undeveloped country. To paint a picture for you, Conakry is a French-speaking city on the west coast of Guinea and is home to around 2 million people. Lonely Planet describes it as a “dusty mess of crumbling buildings, pollution, rubbish and traffic jams,” which feels in part accurate of my experience, but also makes me angry for the negative lens. It was beautiful in its own way and I was eager to rise to this new challenge. Living internationally had always been a dream of mine and my husband and I were committed to living and working in this setting.

A recent coup had put the military in charge, and the dictator who rose to power was hot-headed and unpredictable. This put an undeniable layer of stress on us, but we knew what we’d signed up for. During these first few months, life was relatively peaceful, until my declining health found its way back into the picture.

Crisis #1

One night about six months into our post, I woke up in the middle of the night in excruciating abdominal pain. My first thought was appendicitis, so my husband rushed me to the nearest clinic where I received x-rays and ultrasounds. What they found shocked us: there was something going on with one of my ovaries – maybe it had burst? – and I was also carrying a pretty serious infection. Their next step was to put me on an IV antibiotic and evaluate whether my condition warranted a medical evacuation. If it was indeed appendicitis, I’d need to get to a more well-equipped hospital for emergency surgery.

Meanwhile, just blocks from where I was laying, a protest was taking shape in the streets. The interim president had delayed promised elections, and the military had agreed to let the citizens speak out in protest. Soldiers marched the people into a local stadium where they were promised a safe space to convene. Heartbreakingly, rather than listen to their words, the military locked the doors and opened fire. They publicly raped women. They looted stores. They killed more than 100 and injured thousands. The stadium was one mile from our apartment.

By the time the doctors made the decision to evacuate me, the city was on lockdown. Our task became packing up, notifying our friends and family, and organizing safe transit to the airport as early as possible the next morning. With the help of a few of my husband’s kind colleagues, we made it to the airport safely and boarded an air ambulance, but before we could take off, military personnel climbed aboard to question us. My husband explained our situation (in French) but things escalated to the point where he had to personally discuss our situation with Guinea’s Minister of Transportation on the phone!

Once we finally received permission to take off, we could hardly believe what we saw on the ground below. Fires were burning all over the city. Guns were firing. The entire city – our home – was in chaos. The guilt and shame I felt as I flew away for medical help crushed me. Hundreds of people were being killed but I, the privileged foreigner, was getting airlifted to safety. This injustice is something I didn’t (and still don’t) know how to grapple with . . . painful awareness of privilege is part of my autoimmune journey.

Relocation

A few hours later, we landed at a hospital in Dakar, Senegal to continue tests and determine whether an appendectomy was in order. However, rather than appendicitis, the doctors determined that a cyst on my ovary had burst. I received the necessary treatment and was discharged in a few days, but rather than return to Conakry, we learned that the U.S. Embassy had deemed Guinea too dangerous for the families of foreign aid workers following the bloody protest. It was decided that my daughter and I would be relocated to Ivory Coast while my husband returned to Guinea to continue his original assignment.

As you might imagine, I was a complete wreck by this point. To say nothing of the potential risk my husband was taking on by going back to Conakry, the prospect of navigating life in a new country where I barely spoke the language and would be without the support system I’d had in Guinea, was daunting at best. My health status was far from “back to normal” as well. Even though I was out of the hospital, I continued to experience some pretty alarming symptoms. For the four or five days after I was discharged, my digestive system essentially shut down. I couldn’t really eat, I didn’t go to the bathroom, I didn’t have thirst, and I lost a lot of weight. I was gaunt, weak, and exhausted. I could tell there was something wrong but I didn’t know what.

For this reason, the three of us made the decision that rather than relocate to Ivory Coast, it was best for me and my daughter to return to the U.S., where I could focus on recovering my health. Dave would continue his post in Guinea for another six months while he searched for another job.

This is where some of the “crazy-making” of autoimmune disease comes in. After I returned home, there was a period when I actually started to feel better! My appetite returned and I gained some weight. I regained my strength and emotional stability. I believed I’d survived a painful burst cyst and infection, and that my body was recovering. Unfortunately, I was far from recovering.

Finally a Diagnosis: Endometriosis

A few months later I had another “episode,” just like the one I’d experienced in Conakry. The same excruciating abdominal pain, the same infection. As it turns out, my American doctors were able to determine that the crisis I’d experienced in Africa wasn’t a burst cyst at all, but the result of chronic appendicitis caused by endometrial tissue that had wrapped around my right ovary. Surgery confirmed that I had stage 4 endometriosis and I’d likely been living with it since I was 15. Another piece of my infertility puzzle was finally found.

In March 2010, I had surgery to remove my appendix, along with as much endometrial tissue as possible. Thankfully, my doctors were able to save my ovaries and fallopian tubes. Since my reproductive system was still intact, we were informed that my surgery had opened a window of fertility to us and that many women with endometriosis find themselves with increased fertility following surgery. I was happy to learn this but I was also angry. Years, the “perfect timing” years, had been taken from us. Our doctors had not listened or carefully read the forms and questionnaires we had filled out for them. I had spent needless time in terrible pain. We had asked the right questions, like, “Could this be something more serious?”

It seemed like this was a potential new start for us, but we were also crushingly exhausted by the stress of the whole process. At the same time, my husband got word that he had received a new posting in Sierra Leone (another West African country), where my daughter and I could safely join him. We decided to make peace with not having another child, and that I would move back to West Africa and begin continual birth control (no stopping for a normal cycle) to keep the endo growth at bay. At the time, this was presented as the only option for endometriosis treatment, so I went with it. Unfortunately, I wasn’t aware that this treatment was likely adding to the severity of another yet undiscovered autoimmune disease.

Second Chance Overseas: Sierra Leone

With my new diagnosis and my spirits improving, the three of us were eager to put my medical troubles behind us and have a fresh start overseas. In May of 2010, we moved to Sierra Leone and for the first few months, I felt really good. I started working out, I looked healthier, and my body was coming back to me. I was more prepared this time around than I had been in Guinea and I approached our new post with a tough attitude. “I got your number, Africa!” I thought. For about a year, my family and I felt happily settled…until the day some new symptoms started to crop up.

In the spring of 2011, I started to notice a tingling sensation in my limbs every once in awhile. Eventually the tingling turned to numbness, which was followed by muscle and bone pain. Then, I noticed myself running a low-grade fever on and off, and I saw that my hair was falling out at an alarming rate. The weight loss I’d experienced in Guinea returned and I began to lose muscle mass as well. Possibly the strangest and most disconcerting symptom was an unusual heart rhythm.

Crisis #2

The final straw came when the numbness and tingling in my limbs turned into an intense, deep pain. It was something I’d never experienced before. We consulted our medical evacuation insurance and local doctors who inquired about my birth control use; they suspected a blood clot.

We quickly went to the hospital to have it evaluated and I was given a blood thinner, even though the hospital wasn’t equipped to confirm whether it was indeed a clot. Our medical insurance wasn’t thrilled with this, so they decided it would be best to once again evacuate me to Senegal where I could receive the proper tests. Remembering how disruptive my first evacuation had been, this time I went without Dave and my daughter.

A few days later, after the evacuation hullabaloo was over, I finally got the ultrasound I needed…and it came up clear. No clot. I was, of course, overjoyed that I had avoided such a life-threatening condition. But this brought me back to square one. (Not to mention the fact that my Senegalese doctor was very angry and berated me in French to have done the ultrasound for “nothing!”)

Did the blood thinners dissolve the clot? Was I going crazy? What on earth could be causing these disparate symptoms? How many more evacuations was it going to take before I finally got healthy?

The answer was one more.

Am I Going Crazy?

I returned to Sierra Leone blood clot-free just in time for the rainy season and the end of my daughter’s school year. She and I flew to Montana for our scheduled home leave, while my husband stayed behind to continue working. This presented a great opportunity for me to consult my doctors at home and finally get to the bottom of my steadily declining health. Unfortunately, I didn’t get the answers I needed.

To my dismay, the responses I received were dismissive, condescending and unhelpful. My doctors chalked my symptoms up to the stress of my environment, and even took Dave aside (when he was home for a short break and could accompany me) and asked him whether I was prone to hypochondria or neuroses. No one considered that my condition could be a result of a physical illness. My symptoms were deemed psychological, and no treatment options were given.

Life moved on and we returned to Africa in August 2011. As you can imagine, the stress of my uncertain prognosis and my ever-worsening symptoms was creating a pretty serious storm of anxiety and depression. I started to have strange angry outbursts where I could feel my behavior was unreasonable and irrational, but I couldn’t seem to get ahold of myself. I felt outside my body, and even my mind. I was having a more and more difficult time with my mental and emotional health and I knew it was related to my physical health, but I couldn’t get to the bottom of it.

Weeks went by in this state and I struggled to keep myself together. I began telling Dave that we needed to go home sooner because I was worried about my health and scared about what would happen if we ran out of time in a country that had extremely limited and strained healthcare options. Dave, of course, knew something was wrong but didn’t realize the severity of my condition. He wanted so badly to help but he didn’t know how and I didn’t know what other options we had that we hadn’t already exhausted.

Crisis #3

By late September, I was in really bad shape. My blood pressure started to become an issue and I felt dizzy and faint even when lying down. One night in particular, as I was laying in bed, I started to feel an intense wave of dread wash over me. I don’t know how else to explain it except to say that I was in fear for my life. I explained to Dave what was going on and we decided to go to a nearby clinic.

On the way to the clinic, I started having difficulty communicating and I began slurring my words. I passed out in the car before we arrived and then once again in the waiting room.

Because of the low-grade fever I’d been running, the clinic doctors thought it best to test me for malaria and to our surprise, the test came back positive for cerebral malaria. I was started on an IV antimalarial drug immediately…and I still didn’t get well. Days went by with no improvement so we decided to visit to another clinic for a second opinion. My second malaria test came back negative, which made Dave even more panicked and upset. We were out of options. I had to leave the country again.

At this point because of my medical history, our insurance was willing to evacuate me only if I agreed to permanently repatriate to the U.S. This was a tough pill to swallow since it would mean not only ending our dream of a life in service overseas, but also breaking up my family yet again. But what could we do? My situation had become life-threatening.

Returning Home

En-route to the U.S., I was flown to a tropical disease hospital in Brussels for evaluation, with my daughter and Dave by my side. I underwent a handful of tests – brain scans, malaria tests, etc. – and none showed any signs of malaria, cerebral or otherwise. I was, however, severely dehydrated so the doctors focused on re-hydrating and calming me.

It felt comforting to be back in a more developed country with a medical system that I understood and food that (I thought) was reliable and safe. Ironically, the hearty soup I was served every morning in the hospital, called pottage, was made with a wheat flour base. It wasn’t until many months later that I realized this flour-based soup was only pulling me further away from health.

I remained in the Brussels hospital for four days, during which time my most alarming symptoms had shown only slight improvement. I had, however, regained enough strength to get around on my own so I was released to make the journey back home. The first thing I did when I got out of the hospital? Ate a steak tartare sandwich. If only I’d known! Immediately, the overwhelming sense of dread I’d felt before leaving Sierra Leone washed over me again. I felt numbness in my face and terrible mental anguish. But even worse than the pain was the feeling of deep despair that seemed to follow me around.

No one understood what was happening to me, and it was beginning to seem like no one would ever understand. I was flying around the world from doctor to doctor with my poor family in tow, no closer to answers than I had been a year ago. In the meantime, I was not only pulling my dear husband away from work he loved trying to make a difference in the world, but also unable to fulfill my responsibilities as a mother. I felt ashamed. Adapting to the developing world is challenging, I thought, but why can everyone seem to cope except me? Am I not sane?

I decided that when I got back to America, I would consult a psychologist.

Full-Time Patient

As soon as I made it back to the States, I made it my full time job to see doctors. Dave returned to Sierra Leone to wrap things up so I set out on my own to get myself well. Like the last time I sought answers in the U.S., the results weren’t encouraging at first.

My first step was to work with a tropical disease specialist to determine whether the malaria I’d been diagnosed with in Africa was out of my system. To everyone’s surprise, new tests revealed that not only was I malaria-free, but I’d never even had it. As with my blood clot incident, learning I was disease-free was a relief, but moving back to square one was nearly unbearable.

Next, I started consulting a psychologist to address the depression, anxiety and panic I’d been feeling. It had become the norm for me to wake up multiple times in the night drenched in sweat, certain I was about to die. My psychologist diagnosed me with PTSD, which I later learned was a misdiagnosis. Aside from therapy, there weren’t many options for treatment, and my symptoms continued.

I had also started developing sensitivities to other foods with anaphylaxis-like reactions. I had chronic digestive pain and my belly was distended almost constantly. In retrospect, I know this to be a symptom of small intestine bacterial overgrowth (SIBO) but I couldn’t identify it as such at the time.

My weight also remained very low, regardless of how much I ate or how hard I worked to gain. The fat layer under my skin began to atrophy and indentations developed in my chest and above my hips. If you can believe it, one of the MDs I consulted told me that I should “eat all the cookies, pasta and ice cream I could stand.” Of course, not only did this advice not help me gain weight, but it put me in even more digestive pain.

Eventually, my symptoms became neurological. I had trouble with fine motor skills and speech. Words evaded me. On one particularly disconcerting occasion, I remember dropping a pen on the floor and bending down to pick it up three, four, five, six times before I was able to grasp it.

Despite the variety of my symptoms (or perhaps because of it), I was told more than once that I was neurotic, that there was nothing physically wrong with me and that my symptoms were all in my head. I felt completely isolated in my pain and questioned my sanity.

I had spent nearly three months relentlessly digging for answers and had come up empty-handed. I was leaning heavily on loved ones for practical support (like driving) and childcare support and I knew this couldn’t go on forever. Utterly spent, I decided I had to pursue my worst-case-scenario option: check myself into a psychiatric ward for evaluation.

Finally a Diagnosis – Celiac Disease

Just days after beginning the conversation about psychiatric evaluation, one of my doctors referred me to a gastroenterologist to further examine my digestive problems. If it wasn’t for this referral, I would have been on my way to a mental health ward.

The gastroenterologist was initially concerned about ulcers, but she decided to run some blood tests just to cover the bases. One of these was a gluten antibody test which came back very high positive. She told us she wanted to do an endoscopy to look at my small intestine and take biopsies.

I’ll never forget the moment I woke up from anesthesia. Noises were far off and my sight was just coming back into focus. Dave was sitting next to me and he took my hand as the doctor returned to the room. In four words – less than 10 seconds – she ended the suffering I’d been going through for the last 10 years. You have celiac disease.

I started to cry…with relief. The doctor went on to tell us that as soon as she had begun the procedure, she knew. The damage to my intestines was extensive and she told me my treatment was to eat a gluten-free diet for the rest of my life. In that moment I was deliriously happy. I was not losing my mind! I was not making this up! Something really was wrong. Very wrong.

A Disease of Malnutrition

If you catch celiac disease early enough, a gluten-free diet may be sufficient to bring you back to health. In my situation, it wasn’t enough. From my diagnosis in February 2012 to mid-May of that year, I continued to struggle with my digestion and mental health and my weight had hit a low of 94 pounds. As I later came to understand, celiac disease is a disease of malnutrition. I wasn’t getting the nutrients I needed and I hadn’t been getting them for a long time. At that point I had probably been sick with celiac disease for 11 years.

I became disheartened and extremely desperate, worried that if this diet wasn’t working, I’d have nowhere left to turn. I began asking friends for ideas, and one of them suggested I research something called “lectins,” a component of wheat that is very damaging to the gut. That keyword led me to Robb Wolf, which led me to Sarah Ballantyne, which led me to her emerging research about the Autoimmune Protocol. At that time AIP blogging wasn’t a thing; Sarah was only just beginning to self-experiment with the protocol, and it was nowhere near as complete and definitive as it is today. Still, I knew I had to give it a try.

On May 1, 2012 I started the AIP cold turkey and just three days later, my anxiety and mental anguish melted away. I had been taking Xanax as a desperate measure to cope with my rollercoaster of emotions, and never needed it again after that day. For so long, I felt like my body was a traitor to me, like my personality was changing in a horrible way and my life was handicapped. Jumping into the protocol was a challenge, but compared to the inconvenience of being desperately sick, the inconvenience of the protocol was nothing.

In a few weeks I started gaining weight for the first time in years. My energy levels steadily increased, my brain fog lifted, the numbness and tingling down the center of my face and in my extremities faded away, my neurological symptoms corrected themselves, and my heartbeat went back to normal. In June, six weeks after beginning AIP, I had my gluten antibodies retested and they had dropped by half. Six months later, they had returned to the normal range. I felt like I had a new body.

The deeper I got into the protocol and the more improvement I saw, the more I started to understand how lichen sclerosus, endometriosis and celiac disease were linked. I started to recognize what had likely been the triggers of my disease development, and to understand how diet and lifestyle were involved. At this time I also decided to discontinue hormonal birth control, I knew it was depleting many of the nutrients I needed and disrupting my hormones. I weighed my options and decided I would start to look for other options to help manage endometriosis.

New Body, New Career

Diehard fans might remember this as the period I started blogging about my health journey on AlternativeAutoimmune.com. I was experiencing such profound improvement that I felt other people needed to know about this. What if they didn’t have to get as sick as I got? What if sharing my journey could help other people find answers without the years of turmoil and despair I had gone through?

I started sharing my story to interested folks in my personal and professional circles and found that I received deep satisfaction and fulfillment from offering this kind of guidance. In December 2012, I helped a group of my coworkers implement a Paleo challenge and the experience lit a spark inside me. What if this was something I could do as a career?

I decided that I wanted to channel the immense gratitude I had for regaining my health toward helping folks experience that same physical and mental transformation, and in spring 2013, I enrolled in a health coaching program. Within 6 months of my graduation I was able to transition away from my previous job and begin health coaching full-time.

Within the space of two years, not only had I changed everything about my diet and lifestyle and completely recovered my health, but I’d changed my entire career path as well.

More Endometriosis Surgeries

It would be easy for me to end my story here, when the bulk of my recovery was complete and my life was “back together.” But it would be dishonest of me to say that my health has only gotten better since that time. I’ve continued to experience ups and downs, though far less severe.

In July 2014, I had my second laparoscopic surgery to remove endometrial tissue. This second surgery was more extensive than my first, and its effects lasted for about two years, but by 2016, I knew I needed to go one step further.

In July 2016, I had my third and hopefully final endometriosis surgery. The procedure was done by an extremely skilled surgical team who used a technique called excision, the most advanced and effective treatment for endo. During this surgery, I had my sigmoid colon resected in order to remove a 4-inch portion that had been severely compromised by endometrial growth. Unfortunately, my colon healed with some significant scarring which has had lasting effects on my digestion. Luckily, I’m very in tune with my body’s needs in this regard, so I’m able to keep everything functioning properly through diet and lifestyle.

These days, I feel the way I felt on my second post in Africa: ready for anything. What are you gonna throw at me, body? Whadda’ ya got that I can’t handle? I’m more in tune with my body than many people will ever be, and the gratitude and appreciation I feel for all parts of my renewed life are impossible to put into words. I’m certainly not “best friends” with my autoimmune diseases, but I have come to a place where I recognize the gifts that the autoimmune journey has given me . . . most especially the deep empathy and passion required to help others on this path.

About Angie Alt

Angie Alt is a co-founder here at Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with celiac disease, endometriosis, and lichen sclerosis; one nutritious step at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She is a Certified Health Coach through the Institute for Integrative Nutrition, Nutritional Therapy Consultant through The Nutritional Therapy Association and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol and The Autoimmune Wellness Handbook. You can also find her on Instagram.

31 comments

  • LIza says

    Wow, what an amazing and heart felt story. My jaw was wide open as I read about your story. When it comes down to it, one has to navigate one’s own healing. If I listened to my Conventional DR’s here in France , I would be injecting myself with insulin and be on 2-3 medications for my heart etc. The Doctors are really very lame…(of course ,not all doctors) but they would rather give us a pill then investigate into where the root of the cause of our illness came from.Thank you for sharing your story. The more we can listen to ourselves and our bodies, the more we will be able to navigate our AID. Good health to you and your family.

    • Angie Alt says

      Thanks for reading, Liza. I’m glad my story was meaningful to you.

  • Sarah Sanden says

    Wow thank you so much for sharing! I was looking for a good kick to the pants to get me eating clean again to wipe out my psoriasis and mild depression. This sure helped !

  • Patricia McLean says

    Angie – I am so thankful you shared your health journey! My own mirrors yours and after I cried for a bit I knew I had to reach out to thank you. I have stage 4 endo, probably had my last surgery in 2015 and have been on hormones for so long I have hormone-induced osteopenia. I have been searching for decades for help dealing with endometriosis and your story resonated with me. Pain is my biggest motivator so over the years I have made many changes and restrictions to my diet but never strictly AIP. I am committing to this today. So grateful!

    • Angie Alt says

      I’m so glad this story was meaningful to you Patricia! Keep going! You are worth the fight! <3

  • Damaris Ababio says

    Thank you so much for sharing your story with the world Angie. I was very touched reading your story, especially when I learned that you have endometriosis because I have it too and I’ve been trying on my own to implement natural supplements to help me cope with this diseases as opposed to using birth control because I just never felt right when I was on it and believe I’m still suffering from side effects of it. I look forward to making a lifestyle change through the numerous recipes and tips you 2 share on your blog. Once thank you both for this life changing information.

    • Angie Alt says

      Thanks so much for being here w/ us, Damaris. I’m sending you good energy for endo healing.

  • Hortencia Servin says

    What happen the the lichen scoliosis?

    • Angie Alt says

      Hortencia, in general it has been well-controlled w/ an AIP approach & I rarely have flares or discomfort.

      • Cindy says

        Today I was diagnosed with lichen sclerosis and was searching for help and found this site. I hope to get started on aip but not sure how to start yet.

        • Angie Alt says

          Cindy, sign up for our newsletter & we will automatically email you a start-up guide.

      • Sally says

        Angie, Thx u so much for taking the time to relive your painful story with us. My questions are: do you do anything else in association with the AIP to manage your Lichen Sclerosis? Do u think it is in remission?

        • Angie Alt says

          Sally, I’m very, very conservative using words like “remission” or “cure” w/ autoimmune disease. I have had long periods of very well controlled LS for most of my AIP journey. I do see a gynecologist who specializes in vulvovaginal disorders & use medication in conjunction w/ other natural approaches if I have a flare.

  • Hi Angie,
    Thanks for sharing, and congratulations on gaining a healthy life. I started AIP last week and love the read stories of inspiration, especially those that have cleared their skin conditions. (I have been diagnosed with Lichen Planus, yuk).
    Our suffering can be a catalyst for change, and suffering sucks, right, so it’s change time. I’ve done it before and have come out of the struggle a better person.
    I wish you well dear lady.
    Cheers from Oz.

    • Angie Alt says

      You’re so welcome, Stephen! Wishing you wellness w/ your healing journey too!

  • Anya says

    Thank you for sharing your journey with so much vulnerability and grace. My heart goes out to you <3 I have Hashimoto's, Celiac, SIBO, (possibly more; trying to get diagnosed). I can relate to so much of what you went through, especially the feeling of dread and heart palpitations. I felt that nearly daily for over a year and am still traumatized by it. Worst feeling ever. For me, it was caused by food reactions, especially gluten. It's so frustrating when you know something is wrong but nobody else can see it and Doctors won't validate it. I am so fortunate to have gotten into the natural medicine world early on in my journey so I haven't had to face as much medical negligence. I have tried AIP in the past, but it wasn't a catch all for me. I'm hoping to find healing soon!

    • Angie Alt says

      Thanks for reading, Anya! Even if AIP isn’t all of your answer, it sounds like you are really adept at navigating the options & looking for underlying issues.

  • Susan says

    I am so grateful to have found your website. In two days, I have had more of my questions answered and thoughts confirmed than I have had in 6 months since discovering AIP. I really needed to hear personal stories such as yours and Mickey’s. I have only been on the elimination phase for two weeks and I’m happy to say the brain fog has lifted from my most recent flare up. I was diagnosed in 2008 with celiac, but probably have experienced symptoms my whole life . Since that time, I have developed other allergies and have gone through a full course of doctors, symptoms and knowing something was wrong, but not able to get the help I’ve needed. I now feel like I found the resources that I need and will be consulting an AIP CHC coach, since you are no longer accepting new patients. I look forward to receiving two of the books that you and Mickey have written.

    Thank you from the bottom of my heart for helping to change my mindset. I feel so hopeful that I have a path forward and that AIP is not a diet , but a lifestyle that I will eventually learn to embrace.
    Susan

    • Angie Alt says

      I’m so glad we could help & support, Susan! Wishing you wellness.

  • Deb Schankula says

    I feel so fortunate to have found your story at this point in my life. I self diagnosed with Lichen sclerosus the past year. My gyn has treated me with Clob. She doesn’t seem to support alternative “treatments” like borox or diet. I am definitely going to try altering my diet with the hopes of improving my immune health and hopefully prevent the development of additional autoimmune conditions. Thank you for sharing your story!

    • Angie Alt says

      You’re very welcome, Deb. Glad it was helpful!

  • Dorota says

    your story touched me. How much suffering. I’m so sorry. I was diagnosed with LS. At the moment, I do not only suffer from whitening. I got clobederm. I am very afraid of this disease. I am struggling with fear, he cannot cope anymore. I will try AIP. Are there books that I can translate into Polish?

    • Angie Alt says

      Dorota, I’m sorry to hear about how much you are struggling w/ LS. I don’t know about any LS-specific books that you’d want to try translating to Polish, but you might consider reading our Autoimmune Wellness Handbook. Wishing you so much wellness!

  • Erin says

    I arrived at your site investigating an unusual pneumonia/septic event that landed my otherwise very healthy partner in the hospital for a few days, worried that there’s an underlying issue.

    But I’m blown away by the similarities we have – IBS, SIBO, abdominal pain, completely illogical depression, growing anxiety, losing my words (I call them my “bad days), and pain deep inside my limbs that I can’t really explain to people.

    I’ve never connected these dots before. Between that and my Raynaud’s I’m certain it’s worth looking at all of this through an auto-immune perspective.

    Thank you so much for sharing your story.

  • Martha Wiles says

    Today I discovered AIP and AutoImmune Wellness. Thank you for your acts of bravery and persistence. I look forward to physically being strong again. Three auto immune diseases have taken their toll, but my nutritional needs have been ignored – until now.
    Sincerely,
    Martha Wiles

  • Jennifer says

    Never have i seen a story so similar to my own and it gives me great relief to and hope to know that AIP might help me. I grew up in Brazil with a very natural diet of unprocessed food however i consumed wheat, dairy and lots of rice and beans. My earliest memories of IBS are from the age of 3 when i had extreme constipation and constant stomach pain. The pediatrician gave me a horrible tasting medicine for my liver at that young age. The vulvar itching started at about age 12 but i did not get an official diagnosis of LS until 11 years ago. As an adolescent i had extremely bloody , painful 2 week periods. Later i developed constant optical constant migraines. At 40 i had my first diverticulitis flareup. I had a colonoscopy at age 50 and was told i have a lot of scar tissue in my intestines. I tried every diet under the sun including Paleo to see if i could find relief from the migraines, IBS, brain fog, memory issues, anxiety, arthritis, muscle pain, fatigue and LS, but nothing worked. My LS flare-ups are constant. For the last 5 years i ate Vegan but it made the LS and HSV2 flare-ups even worse! The irony of all this is that I am a non practicing Certified IIN Coach but not until this week did i think to look into AIP and low and behold i find your story here to bring me hope!

    Thanks so much for sharing your story. Can you indicate a professional specializing in LS that would work with me one on one? I just received my DNA report and due to several gene mutations it indicates i should be on a low fat low carb diet and i am finding it difficult to come up with AIP recipes that fit that bill.

    Thanks!
    Jennifer

  • Cindy Darling says

    Angie, heartfelt thanks and gratitude for sharing your health/illness journey. My heart ached for you as I read what you wrote. You must have amazing strength and fortitude. Upon examination my dermatologist was sure I had LS but the biopsy came back as LIchen Planus. I have been flaring recently following total knee replacement surgery and SAIDH (syndrome of inappropriate anti-diuretic hormone) immediately after the surgery, and I wonder if it is from the stress of the surgery and low sodium. I need to get back on the AIP elimination phase. I started AIP in 2014 and within a week felt better than I had in my entire life – clear thinking, energy. I did not do the re-introduction correctly and eventually fell off of the plan. I am not sure what is going on because celiac disease was ruled out with blood tests and biopsies. My heart goes out to you and I wish you the very best. Cannot thank you enough for sharing. I live near DC and am thinking of reaching out to you for coaching.

  • Cindy says

    Angie, heartfelt thanks and gratitude for sharing your health/illness journey. My heart ached for you as I read what you wrote. You must have amazing strength and fortitude. Upon examination my dermatologist was sure I had LS but the biopsy came back as LIchen Planus. I have been flaring recently following total knee replacement surgery and SAIDH (syndrome of inappropriate anti-diuretic hormone) immediately after the surgery, and I wonder if it is from the stress of the surgery and low sodium. I need to get back on the AIP elimination phase. I started AIP in 2014 and within a week felt better than I had in my entire life – clear thinking, energy. I did not do the re-introduction correctly and eventually fell off of the plan. I am not sure what is going on because celiac disease was ruled out with blood tests and biopsies. My heart goes out to you and I wish you the very best. Cannot thank you enough for sharing. I live near DC and am thinking of reaching out to you for coaching.

  • Marian says

    Hallo Angie, dankjewel voor het delen van je verhaal. Ik probeer al zo lang mijn eigen leven te begrijpen met alle kwalen die ik in het verleden heb ondervonden. Ik herken verschillende dingen uit je verhaal. Ik heb als jong meisje de pil voorgeschreven gekregen omdat ik niet ongesteld werd. Viel vaak flauw in mijn tienerjaren. Mijn menstruaties waren heftig. Later bleek ik endometriose-cysten aan mijn eierstokken te hebben toen ik zwanger wilde worden wat niet lukte. Ik moest de pil blijven doorslikken, na hormoonbehandelingen, om mijn menstruaties te verminderen. Vaak had ik last van mijn darmen, voeding en een opgeblazen buik. Ik vermeed zelf al bepaalde voeding zodat ik me beter voelde. Testen voor lactose en gluten wezen niet veel uit. (misschien glutenintollerantie?). Ik ging speltbrood eten en meer salades i.p.v. brood maar at ook veel (zure)zuivel; melkkefir, biogardekwark, Griekse yoghurt, (geiten)kaas, zaden, noten, superfoods. Ik kreeg later Lichen Planus (is uitgeblust), Lichen Sclerosus en nu ook Frontale Fibroserende Alopecia. Ook astma (vaak bronchitis) en uitwendige aambeien kwellen mij met regelmaat. Ook een acute blindedarm ontsteking. Vaak ook last van hooggevoeligheid, overprikkeling en een laag energieniveau. De laatste tijd voelde ik me veel beter toen ik verschillende supplementen ging nemen. Heb onbewust mijn leven al jaren zó ingericht dat ik aan mijn eigen lichaam en behoefte tegemoet kan komen. Maar daarvoor laat ik ook veel, en leef een wat eenzamer bestaan. Nu in Nederland met het AIP protocol begonnen, om te kijken wat dit oplevert. Heb nu alles geëlimineerd en ben heel blij dat ik nu zelf iets kan doen. Heb me altijd verbaasd over de specialisten die allemaal op hun eigen eilandje symptomen aan het bestrijden zijn. Niemand heeft ooit verbanden gelegd of mij op voeding gewezen. Ik kwam het AIP-protocol per toeval tegen. Ineens voelt het alsof mijn leven zin heeft. Ik krijg inzicht in mijn medisch verleden, na al die jaren (ben inmiddels al 56 jaar). Ik kon het nooit begrijpen. Ben nu erg gemotiveerd om het AIP-dieet helemaal te volgen en mezelf hierin te ontdekken.
    Vriendelijke groet, Marian.

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