Learning and Teaching Sustainability

My Auto-Immune Story

before

The Beginning
I noticed the first marks in late November - a couple of red, itchy spots around my ankle. I had been to the desert recently, hanging out with some mangy dogs and doing yoga, so I figured maybe I'd gotten a couple flea bites. I didn't worry too much about it, but several weeks later, they still hadn't gone away.

Then, on Christmas morning, I woke up with a full-blown angry rash. I was covered in itchy red dots all over my shins and forearms. I didn't panic at first. It seemed weird, but I figured it would go away eventually. But a few days, and some deep Google searching later, I was starting to freak out.

Adam and I became convinced I had scabies, a contagious skin infestation caused by burrowing mites. A pimple-like rash that's itchy, and worse at night? Check. Track-like burrow marks, especially around the wrists, elbows, and knees? Double check. "It was those mangy dogs!" I thought, or the yoga blanket I'd laid under during savasana. I went to urgent care and lathered myself in insecticide creams prescribed for scabies infestations, and still my spots kept getting worse. Meanwhile, I hid the marks under long pants and sleeves, terrified and ashamed I might be spreading mites everywhere.

Adam and I went crazy trying to clean the house - vacuuming constantly, washing all the clothing and bedding, and sealing pillows in plastic bags to suffocate any traces of scabies mites or their eggs. But still it got worse. After a month of repeated scabies treatments, and head-to-toe house cleanings, I was feeling really defeated.

Arms - the pictures don't really capture how bad it was
Arms - the pictures don't really capture how bad it was
Legs - I was too upset to take pictures at it's worst
Legs - I was too upset to take pictures at it's worst

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The Diagnosis
It was one of the acupuncturists at my school, Pacific College, who first identified my rash as lichen planus. "The good news is - it's not contagious." she told me. Big sigh of relief. The scabies nightmare was over, but this was something new. She prescribed me an herbal formula that involved boiling raw herbs into a sticky, dark concoction. I was excited to give the herbs a try, but they were time-consuming to make, and tough to swallow. After several weeks of diligently drinking the herbs, I literally couldn't stomach them any more.

Later, I went to see the dermatologist, and she confirmed my condition as lichen planus with a biopsy. She basically told me that doctors don't really know what causes lichen planus, it may be genetic, and there's not much to do for it. She prescribed a topical corticosteroid cream, and sent me on my way.

Lichen what-a? 
Lichen planus is a type of auto-immune condition that effects the skin and mucous membranes. It presents as an itchy rash, and can effect the arms, legs, torso, mouth, scalp, and vagina. While the exact cause is unclear, it typically resolves on its own within months to years.

Auto-immune conditions refer to a wide range of diseases in which the body attacks it's own cells. The "bites" that I had noticed were not caused by outside invaders like scabies mites or bacteria. Instead, my immune system was going haywire - attacking my own skin cells and leaving itchy red battle scars behind.

Living with Lichen Planus
I was hesitant to use the corticosteroid creams prescribed by the dermatologist because Adam and I are hoping to have a baby soon. While small amounts should be relatively harmless, long-term oral corticosteroid use can cause nasty side effects like high blood pressure, anxiety, weight gain, thinning of skin, and increased vulnerability to infection. Essentially, they suppress the immune system to reduce signs of inflammation, but they don't address the root problem. I tried the creams for a few days and didn't notice a difference. At that point, I decided not to use them any more. I was bummed about my diagnosis, but I figured I would just wait it out.

The next few weeks were an emotional roller-coaster for me. Most of the time I felt fine. "It's no big deal", I told myself. "It's just a skin thing. It will go away eventually". But it wasn't going away. It continued to get worse, and I became increasingly depressed. I woke up each day with itchy new spots. They were raised purplish-red bumps in patches and clusters. Some were "umbilicated" meaning they looked like they had belly buttons. I couldn't stand to look at my arms and legs. I called it zombie flesh - my diseased body attacking itself. I wore long sleeves and pants all the time to cover up my skin, so it wasn't really visible to the outside world. But inside I felt distraught and upset. I joined a Facebook support group for my condition, and read horror stories about how bad it could get - sometimes lasting for years, causing hair loss and debilitating pain. "This is my life now", I thought.

The Turnaround
You might think I'm being overdramatic, but the stress and uncertainty of my condition was really getting to me. At this point my rash had been going strong for several months, and continued to get worse. I felt out of control, and disconnected from my body. This was the first time in my life that I've experienced any type of health scare, and it really shook me. I had trouble sleeping, and alternated between feeling depressed and panicked.

That's when I started to do my own research on auto-immune disease. I talked to friends from school who had experience with similar conditions. In nutrition class, I learned about something called the Auto-Immune Protocol (AIP) diet, and discovered a number of people in my Facebook support group who swore by it.

I decided to read more about this life-changing diet. I downloaded "The Auto-Immune Solution" by Amy Myers, MD to my Kindle, and stayed up all night reading it from cover to cover. I learned so much more about auto-immune disease and it's relationship to diet than my doctor ever told me, and it changed my perspective on everything.

Then and there I committed to making a dramatic change in my eating habits, saying goodbye to all my favorite foods like pizza, cookies, and cheesecake among many other things. I was hoping to see miraculous results in a few days, but it took about 3-4 weeks before I really started to notice the difference. I wasn't getting any new spots, and the ones I had were starting to heal. Besides that, I was feeling really good and healthy. I lost a few pounds of excess fat, and the mild acne on my face was clearing up.

I stayed on the AIP diet very strictly for a solid 6 weeks, reintroducing a few more foods after that. It's been over 2 months since I first started the diet, and my lichen planus is 90% improved. My spots are mostly healed, but the scars left behind can take up to a year to fade completely. Still, it's a million times better than the angry dots I had before. They almost just look like freckles now.

Arms improving 1 month into AIP diet
Arms improving 1 month into AIP diet
Legs improving 1 month into AIP diet
Legs improving 1 month into AIP diet

What is the Auto-Immune Protocol (AIP) Diet?
The Auto-Immune Protocol is a very restrictive diet that has been helpful to relieve symptoms for many people suffering from auto-immune conditions. The idea is to eliminate all inflammatory foods from the diet: No gluten or grains of any kind. No dairy. No eggs. No legumes. No nuts or seeds. No nightshades (tomatoes, potatoes, peppers, and eggplant). No alcohol. No sugar! So what can you eat? Basically fruits, vegetables, and high-quality animal proteins like fish and grass-fed meat. It is, in essence, a stricter variation of the Paleo diet.

It's important that you follow the diet very strictly for at least 4-6 weeks, and you can start reintroducing some foods after that.  When I first heard about the AIP diet, I literally thought, "That's impossible!" I didn't think I could go a night without dessert, let alone bread or cheese of any kind. But over the past few months, I've learned that it is totally doable. It's not always easy. I do a lot more cooking, meal planning, and grocery shopping than I used to, but that's not a bad thing. I'm eating healthier than I ever have in my life, and it's fun learning to cook and become a master in the kitchen.

But why, though?
So what does diet have to do with auto-immune conditions? Well, it all traces back to a condition known as "leaky gut". While it sounds messy and gross, leaky gut is another way of describing that your intestinal lining has been compromised. In fact, the border between your body and all the gunk in your intestines is a single layer of epithelial cells. And when it becomes damaged, all hell can break loose.

These cells should be packed extremely tightly to prevent any substances from leaking through. Unfortunately, zonulin - a protein secreted from gluten consumption -  can cause these tight junctions to open up, creating microscopic gaps in the intestinal barrier. Tiny, undigested food particles can leak through these gaps and into the bloodstream, where they are detected by the immune system and cause a reaction.

Over time, these gaps can become larger allowing increasing amounts of toxins to enter your body. This puts a strain on the immune system and creates a cycle of chronic inflammation. The crazy thing is that it can effect people in so many different ways. Rheumatoid Arthritis, Hashimoto's Disease, Multiple Sclerosis, Lupus, Celiac Disease, and Type 1 Diabetes are all considered auto-immune conditions. They all involve the body attacking itself, with the main difference being which body cells are being attacked. And incredibly, this wide range of conditions can all be linked back to the digestive system. If you want to learn more, this article by Paleo Mom is a great explanation of Leaky Gut.

I'd always thought I was fairly healthy, and had no idea that seemingly harmless foods could cause so much damage. The past few months have really opened my eyes, and changed my perspective on healthy eating. The research on this is relatively new, and it's not widely taught in medical school. But more people are starting to talk about it, especially nutritionists, acupuncturists, naturopaths, and functional medicine practitioners.

Whole foods on the AIP diet
Whole foods on the AIP diet

Where I am now - The Grey Area
After 6 weeks of following the diet very strictly, I've started to loosen the reigns a bit. I reintroduced eggs on week 7, and it seems to be going well. I love eggs because they are delicious, protein-rich, and nutrient dense. And while they are still an animal product, they've helped me cut back on meat consumption since starting the AIP diet, which tends to be heavier on meat than the vegetarian diet I had previously been striving for. I've also tried to reintroduce nut-butters, but notice some itchiness if I have too much.

Lately, I've been a little bolder and have tried very small quantities of chocolate, nightshades, cheese and pasta. And nothing bad happened (knock on wood.) But I'm still extremely cautious. I won't die if I eat a bite of gluten, but I could trigger a flare-up if I overdo it. It's a fine line, and I'm still discovering the right balance. If you already have one auto-immune condition, you are more prone to developing another. I'll never forget the past few months of fear and uncertainty, and my eating habits are changed forever.

My plan is to continue following the auto-immune diet with a little room to cheat now and then. My lichen planus seems to be in remission, but it never really goes away. A period of stress or bad eating could set me off, and I can't be too careful. I am thinking about doing some food sensitivity testing in the future to narrow in on my triggers.

I never thought something like this would happen to me, but auto-immune conditions seem to be on the rise and we're not quite sure why. The modern world puts a lot of stress on people, and exposes the body to so many more chemicals than previously ever existed. Plus, the food we are eating is more refined and processed than ever before. All of these factors add up, taxing the immune system, and causing a wide range of health problems. I plan to do further research, and will keep you posted on what I learn. Stay healthy out there, friends!

Life after lichen planus. Zoom in to see the "freckles" on my arm
Life after lichen planus. Zoom in to see the "freckles" on my arm
About the author: Laura Weatherbee
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