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July 30, 2012

Discovering My Adrenal Disorder

Even though this blog is mainly based on disorders and diseases involving gluten intolerances and Celiac Disease, I felt like that I should share my entire story since discovering Celiac Disease was only one half. Most of you probably do not know what an Adrenal Disorder is and what it affects. Before I got diagnosed I had no idea what it was either and how critical it was to living your every day life. This is the other half of my story and journey on getting back to a healthy life style, and being lucky to be alive today.

After about 1 month of being on a gluten free diet and discovering that I had Celiac, things seemed like they were starting to get better and back on track. My stomach pains seemed to be fixed, my headaches were not as consistent, but the one major thing that wasn't right was my energy. I still noticed that it was becoming harder and harder to wake up in the morning and I was starting to get worried. I didn't make that big deal out of it and thought it was still just apart of the recovery stage from my Celiac Disease. I was wrong. One day in school close to the end of April in 2011, I completely lost vision in my right eye, I got very sweaty, nauseous, dizzy, had trouble walking, memory loss, and at one point couldn't even communicate what I wanted to say. With out knowing, I blacked out in the school bathroom for 45 minutes and was taken to the hospital.

Doctor after doctor, test after test, I was never given an answer. I was told I was fine even though I knew this wasn't true and the symptoms continued to happen. My entire life I have been active and played sports. It got to the point where I couldn't physically play sports and do the things I wanted anymore. Being as active as I was, this devastated me. I was tired of dealing with theses symptoms day after day without receiving one possible answer. Although this disorder has caused me to forget most of the summer of 2011, what I do remember is how miserable I was. It's a feeling I can't even explain besides feeling dead. All I remember was feeling this way, inside and out, and not being able to go do a single thing that entire summer. That summer to this day was the worst summer of my life.

It was October of 2011 and I was fed up with being told over and over again that I was crazy, healthy, and  have nothing to worry about. I knew something was wrong and I had to get to the bottom of it. At that point I was about done and was just looking and hoping that maybe, just maybe I would finally get an answer to solve all my problems. But that's not how life works.  I was scheduled to stay in the hospital for only two days to get a series of tests done, but ended up staying for over a week. After having to drink the worst liquid of my life, get every test you could possibly think of done, and go through two surgeries, I got the results back.  Again I was told that there was nothing wrong, and that there was nothing they could find or worry about.

I started to question if I really was crazy, and if I really was imagining these things that I felt everyday. The doctors said they were going to run 1 more test from my blood samples and then I would be on my way. Although I was so excited to finally get out of that place, I could never be so grateful that I stayed 1 hour longer. What the doctors told me next had changed my life forever and how I viewed everything in it. The doctors came back and explained to me that I have a very rare and life threatening Adrenal Disorder. They said there was no cure and that I would have to live with it and treat it forever. I was told I am incredibly lucky to be alive and I would of only had 3 months to live if they didn't catch it. I would have to follow a strict diet and take multiple drugs every day for the rest of my life. But out of all the things they told me, the one thing they told me that mattered the most was...I was going to live.

It was all so much to take in, being told at age 14 that I would have had only had 3 months to live if I would of left one hour sooner. Usually it's not something you would take lightly but really all I could think about was that I was finally going to be better, finally going to be healthy, and finally going to be able to do the normal things a high schooler could do. I really didn't take in how much happened and what it all meant for the rest of my life. but that was something I would need to learn and need to learn fast. Later on I started to realize how long this road was, and how it was only going to get longer. See how I'm living with it today.

13 comments:

Shino90 said...

Truly touching, you inspired and made me cry. I wish we were closer in age and grew up together. I'd have needed someone like you to respond with. I have Celiac Disease, also am lactose, dairy, and soy intolerant. Life was a struggle for quite some time with the fact I didn't know what I could or could not eat, and even though I make everything home made, it became a challenge with rising food costs. I believe I'll have to live my life single, since no partner could ever put up with how different I am, and food is so ingrained into our society of what makes them delicious and the carefree attitude of what goes into your body, WHO CARES? I am glad you are here and living. I want to read more.

Taylor Miller said...

Thanks so much! I'm sorry to hear you've had a hard time dealing with Celiac Disease and your allergies. You also shouldn't think you'll stay single forever. I had someone come into my life a month ago that has Celiac and a lot of the health conditions like mine too. It honestly was the last thing I thought would ever happen to me with all that's going on and I often felt the same way you did too. Just finding someone that understands your diet and what you go through is very important and I'm sure you'll come across that person eventually. I know I'm only 16 and haven't been through as much relationship stuff as most adults, but that's one thing I definitely know just from having Celiac in general. If you want to talk to me more I'm always available and just let me know. Thanks for commenting! :)

Anonymous said...

Taylor thanks for writing this post. It's an amazing testiment to how important it is we listen to our bodies. You knew something was wrong, you advocated for yourself and by doing so you saved your own life. You are definitely the hero of this story! I enjoy your page for all of the great recipes. Please keep them coming:) And Shino90, having to eat a certain diet does not make you unlovable. First and foremost, you have to believe you are worth being with. I am celiac, lactose intolerant, have three other major health problems and am in a great relationship. Does it effect our day to day? Yes, but the pros by far outway the cons and we can laugh about the not so good stuff together. Cook using Taylor's recipes for delicious food, learn from his amazing attitude on life & believe that you are worth loving.

Anonymous said...

I stumbled upon your post when looking to see if an Aveeno product was gluten free. I have a 17 year old daughter who does not have Celiac but is highly intolerent to gluten, soy, dairy and eggs. She too has improved health eating without all these allergens. What really got my attention though were the symptoms you suffered with the adrenal disorder. She too has suffered with extreme fatigue, sweats, nausea and fainting. She is a competitives swimmer and has always been in great shape. She is on an adrenal support supplement. (An alternative medicine person told us she really needed adrenal support.) She feels much better on the supplement. Wondering what the test was that eventually identified your disease.

Taylor Miller said...

Hi! Tests that you can get done would be needed from an endocrinologist. I'm not sure exactly what the tests are called but seeing that doctor would deal with everything involving the Adrenal Gland. There are actually many forms of my disorder that do have names so I would definitely recommend getting tested if you can! If you want any more info from me you can use the contact me button at the top of my blog and I would be happy to share some more stuff with you to help your daughter!

elaine bell said...

hi i would just like to say you are a very brave inspirational young man, my son roan is 12 and just being tested for celiac we found your blog and my family and i wish you all the best and we will continue reading! i hope you keep well and happy as you have achieved so much so far! all the best from the bell family in blackpool uk

Taylor Miller said...

Thank you very much for the support and kind words! I hope you figure out everything with your son. I know it can be frustrating not to get answers so whether it be Celiac or not, I wish you all the best luck. Thanks for commenting!

Pam said...

Hi Taylor, so happy to have come across your blog spot while searching for dairy & gluten free recipes on Pintrest. I was diagnosed last Jan with hypothyroid autoimmune disease, but now that I have identified and eliminated multiple food allergens, I am no longer taking thyroid medication that I've been taking for the past 12 years. I was amazed when I read your story about your life threatening adrenal dysfunction. Wow that's incredible that you persisted until someone was finally able to get to the bottom of it, but so glad they did! I can't wait to try some of the dessert recipes that you shared! I am just now becoming interested in making things other than the basics.

Anonymous said...

All the best to you and your family. My 10 yr old daughter was diagnosed with an intolerance to gluten and dairy and other items. It's been a journey of stomach aches and headaches for a long time. Going from doctor to doctor with no resolve. After we got an alcat test done, we then changed our diet with the help of a dietitian over the past 2 months and she is feeling so much better. Writing from Bahamas. Nicol

Nieki Neill said...

Do you know what test exactly that the doctors ran to find out about the Adrenal disorder? After reading your article it's got me wondering. I went gf in January of this year and the first few months I felt great, but after about 2 months I started not feeling right. I felt weak most of the time, I get dizzy like crazy. I've talked to my doctor and she's done a full work up on my blood, but told me they couldn't find a reason why I'm having these symptoms. I was afraid I might be becoming diabetic, because both my parents are, but according to my blood sugar numbers everything looks good there. A lot what you said made sense; I've been going thru some of the same stuff. I've had quite a few tests, but no answers. I'm going again to talk with my dr this week, I hope you can get me the name of that test; maybe I can get her to run it and hopefully get some answers.
Take care and I'm glad I found your blog. :)

Anonymous said...

You say you have a "rare type of Adrenal disorder". Is there a name for it? Can you please tell me what test was done to determine it?

Adrienne Davidson said...

what is the name of the adrenal disorder

Taylor Miller said...

Unfortunately, my adrenal disorder does not have a name for it since it is the first of its kind seen in the medical community. However, Addison's Disease or a severe Adrenal Insufficiency would be the more common ones that I would get tested for by an endocrinologist.

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