"What do you mean, you're sick?"

I get this, or similar questions quite often, by well-intentioned, genuinely concerned people. I wish I had a simple answer, but I don't. Here goes my best explanation. I'll try to condense as much as I can, but it's gonna be wordy and probably pretty long. But I figure I owe an explanation to more than a few people, especially after almost passing out at church yesterday. (No biggie, just embarrassing). Here goes...

Simply put, my GI doc has labeled me as "non-celiac gluten-intolerant." However, the path to this diagnosis (almost 10 years in the making), and dealing with it, has been anything but simple. Let me explain.

Growing up, I was one of the healthiest people I knew. I had an amazing immune system and would almost never get sick. Even when a crazy bout of flu was going around and everyone else was getting sick, my trusty immune system would hold strong. I've always been conscious about healthy eating, exercising, and taking care of myself.

Over the past several years however, things started to change. Over time, new seemingly unrelated, but unexplained health issues started to creep into my life. I've been to multiple doctors, each who have found another piece of the puzzle, but each who at one point have also told me something along the lines of "hmm, that's weird.. lets try this... or that." Basically, "I really don't know what to do with you, I'm just guessing at this point."

Years ago, it started with unexplained chronic fatigue and clinical depression. Then years later, we found unexplained iron deficiency anemia. Severe enough that every few months I had to go to the hospital to get iron through an IV. And despite my high dosage of iron supplements, it wasn't getting better.  I was deficient in more vitamins and taking more supplements than I can remember. Turns out I wasn't absorbing it or much of anything. I cringe thinking about how much I must have spent on meds and supplements my body wasn't even using. This balancing act of deficiencies and supplements went on for years before we finally added malabsorption, hypoglycemia, and hormone imbalance to my growing list of unexplained diagnoses.

Then a year ago, May 2012, is when things really started to go downhill. I would get dizzy and nauseous and lightheaded a couple times a week. I would fatigue easily and would feel exhausted all the time no matter how much sleep I got. Even so, I had a few good days where I felt pretty normal. Up until July 28th, 2012. I remember the day because it was the day after my best friend's wedding. For the wedding, I had been running around the whole day helping with things and had been doing fine. I was tired, but feeling ok. Waking up that next day I felt so awful and fatigued. I didn't get out of bed that whole day, and haven't had a completely normal "I feel great!" day since.

Since then, things have been a day to day, up and down, better to worse kind of thing... to today... still trying to figure it out.

Hold tight... we're only half way through the story. If you've maintained interest this long, you're a trooper. If you continue to the end... well then you're a saint. Or maybe just incredibly bored. Maybe you should find a more fulfilling hobby than reading people's medical journals.... :)

Over the following months of severe fatigue, I continued to boggle my doctor, as blood test after test came back negative. Still feeling worse than ever and my doctor didn't know what else to do for me.

At this point, my fatigue became enough of a problem that I was forced to cut back my hours at work. And the days I did work were a real struggle. It wasn't until early Fall 2012 that my stomach problems started to surface. I would feel lightheaded if I didn't eat regularly every 2 hours, but when I did, I would feel nauseous and need to lie down after eating anything. I felt uncomfortable like I had indigestion all the time. Sick if I didn't eat, but sicker if I did eat. It was a problem.

My immune system was also shot. I would get any sickness going around and it would take me a month to recover. Between the 4-5 colds/flu's I got over this past year, I literally spent half the year sick in bed. And when I wasn't sleeping, I felt like I should be.

One fortuitous day, when I was feeling well enough to be at work, I met one of my patients, a nurse practitioner, who changed my life. She was telling me how she specialized in a condition called Adrenal Fatigue. The more she described it, the more it sounded like my situation. I made a consultation appointment with her as soon as I could.

Things changed dramatically after my first appointment with Karsen. (I'm putting a link to her website just in case someone reading this needs her help too) She has a fire inside her and a desire to help her patients like none I've seen before. She gave me hope again that we would figure things out together and that I would get better. I can't tell you how many times I broke down crying in her office, but still left feeling hopeful.

So after a few tests, I was diagnosed with severe adrenal fatigue. Basically, from how I understand it, it is when your adrenal glands stop functioning properly, due to some external stress, physical or mental. Adrenal glands produce all the body's hormones, so when they become overworked, your hormones become unbalanced, leading to a myriad of other problems, including fatigue, hormone imbalance, and depression. (All things I have inexplicably had for years). But something has to cause adrenal fatigue... it doesn't just happen. Karsen also was the one to discover my malabsorption problem. This knowledge along with my adrenal fatigue diagnosis led Karsen to believe that something more serious was going on in my body to cause the adrenal fatigue. So she sent me straight to a GI specialist.

This is getting lengthy, so I'm gonna try to wrap up here. Gastroenterologist suspected celiac. He did an endoscopy and biopsy and found my stomach lining had some definite damage, but my biopsy was negative, despite having every other symptom of celiac. In January of this year, he recommended I try eating gluten-free anyway and see if that helps. It did help mostly, so in April he gave me the diagnosis of "non-celiac gluten intolerant," which is just a way of saying, "it looks like and responds like celiac, but we can't tell you it's celiac for sure."

At this point, I thought I was out of the woods as long as I kept eating gluten free. Of course it hasn't been that simple. After eating gluten free for 6 months now, I feel tons better than I did before, but I still get sick (fatigue/dizziness/nausea) usually a couple times a week sometimes more. Apparently I should be feeling better by now, so something else is going on. Still looking for the next puzzle piece.

Several of you kind hearted people ask what you can do for me... to be honest, I don't even know what to do for myself. Usually when I'm not feeling well, I just have to sleep for a long time. BUT here are a few things I've thought of:

-Be Patient with Me: I can't remember the last time I felt really great, but I'm trying to live a normal life as best as I can. When I'm out doing things, I'm prob feeling fine that day, but there's a chance that may change quickly. Please be patient if I have to bail out last minute on plans. I can't plan for when I start feeling ill. Also, after a few days of feeling really awful, it gets harder to control my emotions. You've been warned. :)
-Remind me it will get better: For personal reasons I won't explain here, I have faith and full confidence that I will get better and be healthy again, I know it's just going to take time. So on days when I'm feeling discouraged, maybe just remind me that this is temporary.
-If you have a question, ask!: I won't be offended. Your curiosity means you care. :)
-Just keep being the awesome friend that you are!: Good friends like you are what make it worth getting through the tough days. Thanks for being in my life!

Whew! That was long. Thanks for staying strong. :)