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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.
Looking back, it’s clear to Emma what her two biggest allies have been in her recovery: community and plants. (We couldn’t agree more!) As a 20-something struggling to make ends meet, Emma sought out other roommates who were healing autoimmune disease like she was. They shared groceries, cooked for each other, and swapped stories and advice. That, along with the wisdom of her herbalist background, have ushered a remarkable return to health.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
My current biggest issues are glomerulonephritis (or membranous nephritis), Hashimoto’s and lichen simplex. I had my appendix removed in the 6th grade, yet only recently learned that the appendix is an important part of the immune system!
My hypothyroid and proteinuria (the biggest signals to the diagnosis that would take a few more years) were discovered when I was 18 at a routine physical. I was busy neglecting my self-care while attending college in Boston. It being 2008-9, I decided the degree (potentially social work) was not worth the debt and, upon dropping out of college, found the time to dig deeper into my health issues.
I was diagnosed with the membranous nephritis in the Spring 2010 after a slew of urine tests and a kidney ultrasound and finally biopsy. Knowing I had one autoimmune disease led me to basically assume my hypothyroid was also autoimmune in nature, but it was well-managed with 100mcg of Levothyroxine for many years.
I was only formally diagnosed with Hashimoto’s this past Spring (2017) after a nodule grew. I had a thyroid ultrasound and finally got an antibody test (how is this not yet standard care at hypothyroid diagnoses?).
Describe what the lowest point on your health journey was like.
I was about 19-20, and was struggling to make ends meet. I was dropping out of college and worked multiple minimum wage ($8/hour) part-time jobs. I became so fatigued I would manage to fall asleep on the city bus, a bench in a public park, or my own floor. My skin was itchy, I was losing up to 6 grams of protein per day in my urine. I was anxious daily, especially in fast-paced food businesses like Dunkin’ Donuts and grocery stores.
Like many folks with autoimmune diseases at their lowest point, I was a vegetarian. My first-ever job as a teenager was in a bakery, and I continued baking into my 20s. I would bake bread, pretzels and bagels from scratch for myself and my roommates. I was barely surviving on a load of gluten, nutritional yeast and soy, feeling happy that I could afford this super cheap scratch-baked-gluten vegetarian diet. However, I was having diarrhea 2-3 days per week, getting bloated regularly, and had chronic hiccups (yes, every day, even in my sleep, I would hiccup). Also, after never having a dental issue in my life, I suddenly had 6 cavities that needed fillings.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
Specifically, growing up with parents who had autoimmune diseases made me look for an alternative route of healthcare. Both of my parents retired on disability when I was relatively young because of their own chronic health issues. I grew up watching the standard American diet and standard American healthcare system fail time and time again.
Although I give allopathic medicine a hard time in general, I was lucky to grow up in Massachusetts — a state that has a pretty excellent public health insurance program for low-income folks who need access to standard healthcare options. Just sayin’.
As soon as I realized how serious my conditions were, I reached my tipping point. I went to consult with multiple herbalists, began experimenting with dietary changes, got regular lab work with allopathic doctors and started a new prescription. I went a few steps further and apprenticed with local herbalists for years, diving into their holistic perspective on how the body works and what can be done to re-balance it.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
In just over a month of quitting gluten and dairy, and drinking a daily infusion of nettle tea, my Microalbumin to Creatinine ratio (how protein in the urine is measured) went from about 2,700 to 650. Still drastically out of reference range (0-30), but an obvious major improvement.
My chronic hiccups dissipated, and itchy skin subsided (though I still struggle with this from time to time). I became less anxious and more able to handle stress. My digestion improved. At this point, if I got cross contaminated, I would be in bed for at least 72 hours and affected for over two weeks. Over the years, I made a slow-but-steady progression toward a full Autoimmune Protocol diet, which is what I needed to do in order to get other aspects of my life in order in the meantime.
Doing something as drastic as the full Autoimmune Protocol diet does require a certain amount of stability that I did not have in my early 20s. The longer I stay strict on diet, and the fact that I currently eat full-AIP, leads me to a steady progression in lowering kidney inflammation — my MALB/Cre ratio is now in the 120s. It’s not perfect, but it’s not going to cause irreparable kidney damage in the next few weeks or months, as those very high numbers easily could have. I credit nettle (Urtica dioica) infusions with a lot of this, personally.
What resources have you used on your healing journey so far and how did you find them?
I like Dr. Sarah Ballantyne, of course. My biggest resource has honestly been my local community of friends who also have autoimmune diseases. Toward the beginning of my journey, when I first went gluten-free, I also dropped out of college (for the second time), broke up with a partner I had been living with, transitioned jobs and quit all social media platforms. Until recently, I haven’t been connected with the vast majority of folks who share their experiences with autoimmunity on the internet. Also, it’s hard to be social with people when you’re so sensitive to gluten that you don’t even want to sit in a restaurant!
When my dear friend/roommate and I realized that our cross-contamination issues were so bad that we needed to live in a gluten- and dairy-free house, we sought out other roommates who were also healing from autoimmune diseases. We individually had our own practices and styles to take care of ourselves, but generally split CSAs and were able to cook for one another — all some form of Autoimmune Protocol diet. We would have gluten-free birthdays and holidays when our families couldn’t/wouldn’t accommodate us. Not to mention — we’d basically seen hundreds of healthcare practitioners between us, and would swap stories and ideas for care in the greater Boston area.
People with autoimmune diseases are everywhere, and I think we should be friends. If you’re local to Boston or if you have the same kidney disease — hit me up! (Also, check out the Massachusetts AIP Meetup Group!)
Otherwise, plants have been my biggest allies in being my own healer. While many plants contain constituents that actually encourage human bodies to perform their own healing work, the plants that grow in my community have just taught me how to be. Plants offer many lessons that folks with chronic/autoimmune illnesses can benefit from remembering: how to take your time, live seasonally, throw shade, stay grounded, be in community. Spending time makes you realize, some plants take the perfect conditions in order to flower, and others just flower over and over, seemingly despite their environment.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
I take an ACE Inhibitor drug (5mg Ramipril, a “really small dose”) for my kidney disease. The pill does not traditionally treat kidney disease, but is used for high blood pressure, and often folks with high blood pressure also eventually have protein loss through their urine. ACE Inhibitors have been found to lower proteinuria, so, although I have never had high blood pressure, this is the only conventional medical way of treating my glomerulonephritis. I tried several different ACE inhibitors before sticking with Ramipril, all of which made me dizzy and fatigued with weak muscles. One of them, (Lisinopril, I think) made me pass quarts of urine nearly all day long. It was absolutely ridiculous.
I was looking for “other methods” the whole time I was also seeking conventional treatment. I decided to apprentice with local herbalists and ended up attending 4 years of herb school, to a clinical level. One of my main mentors has multiple sclerosis (which my mother also has) and manages it with diet and herbs, often shunning the conventional approach to any autoimmune disease. The programs I sought out heavily focused on chronic illness, autoimmunity and diet. Now, I do a significant amount of my own healthcare and locally work with clients who are interested to do the same. This integrative approach, using medications when absolutely necessary, while focusing on diet and medicinal herbs, is clearly what has given me my health today. And I’ve got years of lab work to prove it.
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 feel very fortunate to honestly say: my job brings me joy. As a self-employed person, I have varied work responsibilities, but I primarily work as a birth doula around Boston, MA. Because I’ve taken such specific care of my health in the past eight years, I’m now physically capable of expending the amount of “stress” it takes to be an on-call birth worker full time. I can recover from pulling all-nighters with laboring clients a few times per month. It is always absolutely incredible to watch a family welcome their new babies into the world, no matter the circumstances that get them there.
When I first attended a birth doula training in 2010, I was truly moved. I found the exact thing I’m supposed to be doing with my time, I thought. Back then, there was no way I could imagine actually having the energy to spontaneously go to a birth, let alone with any regularity. Fatigue is real. As I paced myself making dietary changes, getting extra sleep, and interpreting lab work from doctors, I gradually increased the number of clients I took on. In the past, I would need a full 12 hours of consecutive “recovery” sleep after many clients’ births, and still experience drawn-out flares of all kinds. The more practice I have (both with self care and in birth work), the swifter my recovery becomes. These days, the responsibility of being on call nearly 24/7 keeps me in check with food, sleep and stress-reduction practices.
Otherwise, I get lots of joy from spending time cooking, walking in the local woods, dancing obnoxiously to electronic music and occasionally going camping when I’m not on call for babies.
Learn more about Emma’s work as a doula and herbalist on her website.
Would you like to share your Story of Recovery? Let us know by filling out our interest form.
Just want to say I keep returning to this post because I am searching for others with IGAN who are trying the AIP diet. My results continue to get worse regardless of the diet and I am supposed to be eating A LOW PROTEIN diet for this condition….so how to do AIP without lots of protein? I am at a LOSS. Any help very welcome!!! Thank you for featuring Emma!
Hi Kristina! I’m sorry to hear you aren’t experiencing success with your elimination, the best advice I have is to seek out help from a practitioner who is an AIP Certified Coach and can help guide, troubleshoot, and modify due to your needs. We have a huge directory here: http://aipcertified.com. Good luck!
Hey there. I have Stage 4 Chronic Kidney disease, as well as autoimmune issues.
I started a pseudo-AIP in early-to-mid-March of this year (2021,) and after seeing gradual [albeit surprising] improvements in my symptoms; energy; and general quality of life rather quickly over the first week or so of my initial experiment,.. i used a couple weeks to transition my diet&lifestyle accordingly, and had committed to [a total & Extremely STRICT] Full AIP by the 1st of April, 2021. 🙂
Although it’s only been [slightly over?] Three Months that i’ve been steadfastly committed to this protocol, my progress has been astonishing! Im certainly by no means in perfect health, nor am i “cured,” but the reduction of my most dibilitating symptoms including: the intolerable physical pain, the severe-soul-crushing “fatigue,” the exhaustion& weakness, vertigo, constant unbearable itching, fluctuations in blood pressure, night sweats, that cruellest INSOMNIA that makes sleep utterly unattainable despite feeling on the verge of physical/mental collapse
Alyce! Wow! Thank you for sharing your incredible story here. Wishing you continued recovery!
Thanks for this. I am just trying to find out some info on nettle tea—which I’ve also been using a lot for my healing journey. I see on hte Paleo Mom site, that they say “Agglutinins from nettle (typically consumed only cooked) increase intestinal permeability.” https://www.thepaleomom.com/worse-than-gluten-the-agglutinin-class-of-lectins/ So I’m confused about whether they are okay or not.
Thanks so much,
Bear, I think in light of the info Sarah shared above, it would be best to avoid nettle during the elimination phase, and then reintroduce later. Hope it helps! -M