After years of searching for answers, a crazy mad scientist looking doctor was finally able to help me. Today I am sharing my story of diagnosis and the beginning of a journey to recovery.
This past Monday, I got an unexpected phone call from a doctor’s office I have been on the “waitlist” to get into for months. We called in May to finally make me an appointment after months of talking about doing it, and it turns out they didn’t have a spot for me until November. So we said to please put me down for November, but if by any chance you can get me in before then, keep me in mind. And for some reason, they called me and said they had an opening that evening and wanted me to come in. I was referred to this doctor by a family at our church, and they swore that he was this crazy scientist with all kinds of off the beaten path methods, and he would surely be able to help me with all my crazy symptoms and unknowns I have lived with for years now with no real answers.
I have spoken about my health lightly on here in the past, but to fill you in, I have been sick for almost ten years with really no answers. I am always tired, always a little groggy, I have had swollen lymph nodes all over my head, purple fingers, and I have had increasingly bad anxiety and a list of other things that just didn’t make sense for me. I don’t tell you this as a sob story, honestly, it’s just reality and what I have come to consider normal over the years. I knew at 14 years old that something was not right, but every doctor my parents took me to told us there was nothing the matter. I had every kind of test and saw every kind of doctor you can think of. Eventually, I got scared to talk about any of the weird things I experienced anymore and felt ashamed. The doctors basically led us to believe I was a hypochondriac, a child who believed they were sick when they weren’t and often because they wanted attention. Though I knew deep down this wasn’t true, I gave up fighting. I gave up the fight for my health, the fight to be heard, and the fight to be better. By my senior year of high school, I couldn’t keep my eyes open at school and I would come home to sleep about 3 more hours on the couch until my parents came home from work. I finally saw a doctor that got me on the right track in college when my health was so bad that I began forgetting where I was when I was driving. I was convinced I was a 20 year old with Alzheimer’s disease. Finally a friend tipped me off to seeing a doctor about gluten, because my symptoms sounded strangely similar to her own. Turned out I am in fact allergic to gluten and my Adrenal Glands were burnt out. I had never even heard of Adrenal Glands before, and gluten was something I had eaten my whole life. I was shocked, angry, and a little selfishly skeptical. You’re telling me I have to give up my favorite foods?
I battled the diagnosis for another year, slowly changing my diet to gluten free. I would cheat here and there, and pay the consequences for how it made me feel. I would say “it’s worth it, I swear.” That cheesecake, so worth it. The cupcake, I will be fine. But, nine times out of ten, it wasn’t actually worth it. I convinced myself that eating something I am not able to was just an innocent cheat, and it wasn’t doing longterm damage or dishonoring my body. I realized foods with gluten weren’t just something I liked, but I was refusing to do what my body needed because I was stubborn and unwilling to let it go. After I learned my brain was swelling from eating food I cannot process, I ate fully gluten free for about a year and a half and changed up a lot of what I did, but even still, my body felt it was only getting worse. Random spots on my body hurt, my skull felt swollen, I bruise easily, and my eye sight in recent months has began to take a shot. I literally have kept an ongoing massive list of weird, random symptoms I have that have no explanation, but must somehow be connected to all the others. They are kind of funny, honestly. And it is crazy to me that I was told for so long with this list I was just dehydrated or tired. I am serious- I was told that!
So, I find myself in this crazy Einstein looking doctor’s office that looked straight out of Bill Nye The Science Guy Monday. He had hundreds of viles lined up along the wall with different ingredients inside of them, and electric balls and magnets hanging from old filing cabinets, and on the wall an outdated poster of an ear with different markings and body parts on top of different parts of the ear. Paul and I sat in the chairs below the big ear posters, one the American version the other the Chinese, and stared at this doctor as he smirked at me and said, ‘alright, how can I help you?’ I stared at him for a few seconds, because I didn’t know what to say. I have been in this seat multiple times, tested and pat on the head to be told I was okay. Everything in me would scream, “No I am not! I wouldn’t be here if my body was telling me I am fine.” So, I began spitting out in a really informal manner and illformed sentences what all I have experienced the last ten years. I explained what different doctors have told me, what I had studied myself and felt it might be, and that my most recent trip to the doctor was a couple years ago where they told me I am allergic to gluten and my adrenals are shot. The man literally stared at me and giggled a very delayed giggle, and I awkwardly shifted in my seat, slumping over a little with defeat. I was convinced I would find no answer yet again, and this was a waste of my time.
Then, Doctor Von Bergen grabbed me by the hand and stood me up to stare at the odd ear poster above me. He explained to me that our ears tell us what our body is trying to. He began touching my ear digging inside of it, around it, pulling on my left arm all the while. He found a weak spot, and my arm dropped. And he giggled. He said, know what that spot tells us? It tells us your gut is in trouble. He proceeded to have me hold my arm up as he pushed down on it, and then if he covered my right ear, my arm would drop. But, if he covered my left ear, my arm remained strong. This had something to do with the sides of the brain, and my right arm was my weaker arm because it is commanded by the left side of my brain, and my left side of the brain is the side that is affected by all these other things. (Laymen’s terms, clearly, but you follow me, right?) This would also explain why it’s my left eye ball that has dropped in vision significantly the last month.
FASCINATING, y’all! My jaw was on the ground half my appointment.
The next thirty minutes I held a magnet in my right hand while he put vile after vile of ingredients up to my left side with a magnet. Anything my body is sensitive to, my arm would drop. It was truly fascinating. He is the first doctor who ever made me feel like, wow, I am not crazy. So then the diagnosis. Basically, right now, I am allergic to everything. My body is so shot from so many years of going undiagnosed that my body is literally unable to process just about everything. He literally looked at me and said, “I could cry for you, because this will not be easy.” That’s encouraging… but actually, in a weird way, it sort of was. It was the first time I felt fully acknowledged for all that I had experienced for so many years. What he came to the conclusion of is that I have been allergic to yeast my entire life. Allergy to yeast causes your immune system to take a shot, and then, because I was sick as a kid so much, I was put on antibiotics that only knocked my immune system out more and made my yeast allergy more intense. I would spend the next 15+ years of my life battling tonsillitis, strep, mono, and all kinds of other sicknesses for which I was put on antibiotics, and it was a downward spiral for my body. I literally had strep 9 times in the 4th grade, and my doctor just told my parents I was a “carrier of strep.” What the heck does that even mean?! Month after month I was on amoxicillin or penicillin, and my body was becoming more and more weak. This is why I became allergic to gluten later in life. And over the last couple years, even though I have been gluten free, I have been piling yeast into my body still, thus no recovery. Yes, all my gluten free items- packed full with yeast. We did some serious pantry cleaning Monday night.
So, why am I telling you this?
WELL, first off, because I hope that if any of you are going through similar experiences, you can know you’re not alone and perhaps you are allergic to yeast or a random ingredient like me. Second, because I am now on a journey to recovery and am actually excited about it. I am on a diet that consists of meat and vegetables. I cannot even eat fruit, because I have leaky gut and cannot eat sugar of any kind. My Adrenal Glands are so swollen, that when he was testing them, even water made them react negatively, so I have to prioritize sleep and dwindle down the coffee intake. Say WHAT? Yes, so I am on a journey that will be tough. But, I am so hopeful and so ready. I am all in for this one. The Lord responded to prayers by way of a mad scientist, and I am so grateful. Now, it is time to heal and honor my body in a way that it hasn’t been for majority of my life. I am ready to take on this journey, grabbing the bull by the horns, if you will. 😉
I am excited to share with you along the way what all I learn, what I find, and how I am feeling. And, truly, I know that I am meant to write about this to help others. If you are my age, you are the product of a generation that was on meds left and right. It wasn’t our parent’s faults, it was just where medicine was at the time. I know I cannot be the only one who suffers now because of what was put in my body then. Chances are, there might be quite a few of you who struggle with similar things in a more mild form that you just have counted off as normal. Don’t call it normal! I promise, you don’t want to, or you’ll find yourself where I am.
I hope this encourages you, and I hope that it spurs you on to take care of your body. We get only one, and it truly is a temple. To put anything in it that we know is bad for us is to poison our temple. It’s so funny that a couple years ago, had I been told this, I would have wept and been so angry. But, I left smiling and affirmed Monday night. I felt like I actually had all the answers I have wanted for so long. I didn’t even care that it was drastic and life changing for Paul and me. I am just thankful to be heard. I feel like I just took off from the start line, and I feel equipped for the race. God cares, y’all. He really does.
Happy Wednesday, friends! I love you so much. Thanks for being part of my life.
xoxo- Han
leslie says
please keep us updated as you continue through this journey, especially the things you change and the differences you notice
Kristyn Cole says
Paying for you sweet girl. I can’t imagine what you’ve gone through but I’m so happy you’ve found answers.
Paige says
Wow. Just wow. From someone who suffers from autoimmune madness I pray this is it for you. That you can take steps to truly heal. Hang tough, Hannah!
Kaycie says
This is crazy similar to my story! Been to hundreds of doctors, and I finally went to a mad scientist Doctor like you did…in Canada for answers. Figured out I was allergic to gluten and it has changed my life. I still battle with the struggle of other things that I have like rheumatoid arthritis, but taking gluten out of my diet has been a miracle worker! I’m only 28, so I feel your pain. I hope this helps, and I’m confident it will!
Ps I love your pup, we have a goldendoodle too and are in love!!
Rachel says
You continue to encourage and inspire others as you walk gracefully through life and the struggles that come along with it. You are right – God is good and I will be praying for you during this time of change! So glad you have these answers!
Hannah Gaines says
Wow! So many of the symptoms you mentioned I have been struggling with as well. I often say to my husband, "I just don’t feel good. I don’t know what’s wrong but my body hurts and I’m so tired." I always feel like I’m complaining because it’s hard to describe how you feel, and you’re often looked at as "being dramatic." I feel encouraged to get checked out, and even change up my eating habits to see if that’s the case with me also. So, thank you for sharing!