We are still searching for the answers……
What seems like just a few short months ago, I shared with you the story and background on how I lost all of my hair. If you are new follower or missed the original story, you can read it here: Life Throws Us An Unexpected Curveball
Since publishing that article 6 months ago, we have received so many words of encouragement, thoughts and prayers from all of you and we can’t express enough how much we appreciate your support and kindness.
We haven’t talked about it publicly on the website since that time. There is too much gardening, DIY projects and recipes to cover for that!
However, over the past couple of months many of you have reached out to check in on me to see how things were going. Because we truly believe that you are an extension of our family, we thought now would be a good time to give you an update and how we are still searching for the answers.
First, let’s take a minute to go back to October 2017. At that time I was diagnosed with a sudden onset, autoimmune disorder called Alopecia Totalis. That meant that I lost nearly all of the hair on my scalp.
This condition has no definite cause and no cure. However, if you read the story of how we got to this point, we definitely could find some likely triggers to the onset of the disorder.
The good news is that I have a non-scarring form of alopecia, which means that regrowth is likely!
The Dermatologist that I was seeing wanted to do an experimental treatment with me. He had heard from other physicians that a popular oral medication used to treat Rheumatoid Arthritis helps you grow your hair back. Because a newly introduced medication seemed to tip off my alopecia, this wasn’t a route that I was willing to take.
After receiving hundreds of emails and comments from our readers who generously shared their own experiences with not only alopecia, but other autoimmune disorders, I decided to do some more research on potential causes and treatment options.
I went online to see what I could discover. However, the internet can be a dangerous place when you are searching for medical answers. From personal experience stories to web-MD, I found conflicting information on potential causes and treatment options.
During each article I read a common theme kept showing up. I quickly learned that food can be a trigger to a lot of medical conditions. Even foods that we perceive as healthy for us (like tomatoes, peppers, potatoes, etc..) can be toxic to some people. See Dr. Grundy’s Book – The Plant Paradox
I have always been a fairly healthy eater. I enjoy tons of garden vegetables and eat little red meat. Yes, I do love a good pizza or chicken wings now and then, but I hardly ever over indulge myself on junk foods.
I just couldn’t imagine that the food I was eating would be able to cause that much harm to my own body.
The only thing that I could do was eliminate foods that have the high potential to cause an inflammatory response in the body. I basically began to eat mostly vegetables (minus those in the nightshade family) and limited sources of grass-fed, or wild-caught meat.
My hair began to grow back, but in patches. I had a huge ‘target’ on the back of my head where the center patch grew in, but the surrounding perimeter was still without hair.
I also had several patches on the crown of my head that refused to grow hair, while the sides and top part of my head sprouted new growth.
My hair was coming back curly and with more gray than I remember. But I didn’t mind, at least it was hair!
I would stick to the nutritional limitations for a couple of weeks, and then it happened….. Family functions, sporting events, just one cheat meal, etc…
And of course, just one piece of pizza reintroduced gluten, dairy and nightshades all in the same bite. Sure enough, I would wake up the next day with a rash on my face.
The rash first started on each side of my mouth and down to my chin. This rash I was familiar with before I lost my hair.
Looking back at it now, it was the first sign that something in my body was different.
About 1 year prior to my hair falling out, I noticed that I would get a light rash on my chin. It would itch a little and it really wasn’t that noticeable to anyone else.
My skin has always been sensitive so I first chalked it up to poison something that I surely got while working around the farm. This rash kept coming and going and sometimes even needed a small dose of Prednisone to relieve it.
But now, each time I let something slip back into my diet, the rash got brighter and started to spread to my cheeks and eventually spread to my eyebrow and hairlines.
Not only was the rash getting worse, I noticed that the hair that began to grow back was beginning to fall out again.
I was frustrated!!!! It was now February and not only did I begin to lose my hair again, but my face was speckled with a bright red rash most days of the week.
This is when the sadness hit me. I was okay with having a rash OR losing my hair. But both seemed like way too much for me!
I have never been one to wear a lot of makeup. But I found myself spending more time trying to cover up the rash with concealer than I had ever spent getting ready for an evening out. It just wasn’t ‘me’.
Jim would always tell me how beautiful I was and how he loved my patchy wavy hair as it began to grow. He gave me lots of hugs, encouragement, and he always stood proudly by my side when we were out in public.
He never batted an eye when someone would look strangely our way or when I told him someone said I looked like my head had been pecked by a chicken. Really, that did happen!!!
We would smile and eventually laugh through it all, but I knew something had to be done.
Still searching for the answers…..
I wanted to find someone to help me find the root of the problem and not just treat a condition. I looked through our insurance providers and we didn’t have a Functional Medicine Physician approved in our network.
So I went the next best route – allergy and immunology testing!
I finally got into an Allergy clinic with hopes that skin testing for certain food items would lead me to know what was causing this awful rash on my face.
I arrived at the office in such a good mood, knowing that answers could be on the horizon. Little did I know, there would be another bump in the road.
As I stated before, I have always had very sensitive skin. I get poison ivy just by looking at it and if I get a mosquito bite, it turns bright red and swells up to the diameter of a softball.
One review of my medical history form and a simple test, and the Physician knew that I couldn’t have skin allergy testing completed on me.
He took the top of a rubber stylus and ‘wrote’ on my back. Five minutes later he returned and he could visually see what he wrote on my skin – HIVES. A condition known as dermatographia (writing on the skin).
This meant that my skin would react to whatever possible allergen was introduced. Not because of a true allergy, but because my skin would automatically release histamines to try to protect itself from being touched.
He didn’t think the rash that was on my face was a true allergy to anything, especially not food. But when I explained and reexplained my history and research, along with shameless pleading, I convinced him to do some blood allergy testing.
Since each blood allergy test is food specific, I was asked which ones I thought could be causing the reaction. I listed the most common inflammatory foods, along with foods that I eat consistently in hopes to narrow down the culprit.
AND THE SURPRISING UPDATE…….
After a week of waiting, I finally got the call. All nuts, dairy, gluten and nightshade family foods came out negative!
The one test that came out as positive for an allergy – EGGS! Both egg whites alone and combined egg white and yolks.
The one food item that I didn’t eliminate from my diet because I only ate the eggs from our own pasture raised chickens. In fact, I probably ate more eggs than I had before because I had limited my dietary intake to so little foods.
So, now the next step in the road to recovery begins. I am not sure it is the last step, but it is definitely a step in the right direction!
It has only been a few days since we discovered the news, so I am adjusting to a new set of dietary restrictions. However, I am sooooooo happy that I can have my tomatoes, peppers and potatoes back in my diet!
And I am also excited that I was ‘forced’ to try foods that I would never have considered through this process. Who knew coconut aminos would become my soy sauce replacement. And I never thought I would eat, and like so many types of mushrooms!
I would like to thank all my friends, family (including my internet family from around the world) for all of your love, support and kindness during this crazy bump in the road that we call life. You have made the process easier to handle and on the hard days, your kind words continue to lift my spirits up.
I look forward to the next update post when I can hopefully show you the newest hair style or tell you more funny stories on the things people say!
Mary and Jim
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