The Dreaded Diagnosis

Alright. I have finally made it to my GI appointment.
 It was actually pretty boring, he just asked me a bunch of questions about my symptoms, and then suggested we do a colonoscopy...and an upper endoscopy... Two fun words that I didn't know what I was in for.  First off, if you are young enough and have never needed a colonoscopy, you know they give you this gallon of nasty stuff that you have to drink.  Fun fact, I couldn't drink anything accept water without getting an upset stomach.  So trying to down a gallon of nasty potty activator is difficult. I tried putting it in water, juice, milk, soda, and anything else you can think of.  Needless to say, it didn't go over very well and I couldn't finish the that jug.  I was up all night too trying to do this, because you can't go to sleep the night before since you will be up going to the bathroom all night.
I went to my appointment the next day, and of course they put you under, and they stick tubes down my throat and in my bottom.  After I woke up and came to, they told me they could not do the colonoscopy due to my colon not being clean enough, which of course I couldn't drink that nasty stuff, so I was very nervous I was going to have to try this again.

Good News: I did not have to have do another colonoscopy!
Bad News:  I had Celiac's disease.
I remember on my way home I was very bummed. I knew the basics of what I couldn't eat. First of all being flour. That was the extent of my knowledge.  So in a protest on the way home from the hospital we stopped and got KFC. Sort of like a going away party for everything that I was going to have to give up.

Here's the fun thing, and by fun, I mean not fun.  The GI doc literally just told me, you have Celiac don't eat gluten again, have a nice day.  WHAT?! What does that mean?  What is gluten?  What happened to my body? How did I get it? 

Its hard to find a good doctor, and in our small town there are not a lot of other options to try and fit your needs.  What is sadly super common however, in the medical field, is the LACK of information.  Why can't we explain things to people? Why am I required to ask the questions when I don't even know what questions to fully ask. I have no idea what Celiac actually means.   We depend too much on medication, because we want instant gratification, instant relief. Everything we do comes at a price. Not only have we ourselves created it this way because of our demands, but the medical/pharmaceutical companies have also because of greed.  I'm not saying this is everybody across the board but it is a majority in our society today.   Celiac's wasn't a widely diagnosed allergy because there is no medicine you can take to make you feel better! So there is little research in it because there is no money in it!
Thankfully I have a mom who is really good a researching to help me find out what it means to have this allergy.
I still was not prepared for what was a head of me.

Gluten Detox

Have you ever tried a detox? Sometimes diets will have a detox of of sugar, or a 3 day detox.  If you have ever done anything like that, you will know that you usually don't feel good for the first few days, you usually get flu like symptoms. Body aches, chills, fatigue, sweaty etc.    Maybe someone you know has gone through a detox like that, or even a detox off of something super serious like drugs or alcohol.  I am sure you can understand how unenjoyable it is.   If you don't know detoxing off of gluten is AWFUL!   I had no idea there was even such a thing a gluten detoxing! Like it's just food!!!  I was not on drugs, I ate gluten, that's it.

There are several phases of the detox. It can last up to two years depending on your body, of course.

The first rough patch was extreme migraines. I don't not fully know if this is part of the detox, but I was not allowed to take ibuprofen for two weeks after my upper endoscopy due the fact that ibuprofen can cause stomach bleeds. Since I had a piece of my stomach removed for a biopsy, you have to let it heal.   Now, remember I have no idea that my headaches can be related to my gluten. I have had headaches my whole life. I was just told to take ibuprofen. 

I was able to take Tylenol for the two weeks, but I had never taken Tylenol before. Let me tell you with the intensity my migraine was at, it did nothing.  I was stuck in bed for 5 days, I was so much that the doc gave me heavy pain blocker, (I don't remember the name.) It did nothing for my headache. All it did was knock me out hard core. I couldn't work, I didn't eat, I couldn't talk. I couldn't even open my eyes. I was out of work for a full week.  The docs didn't really know why I was experiencing this. It could be because of an ibuprofen withdrawl, and of course, I couldn't have any type of anti inflammatory.  Did you know that like a caffeine headache, you can also get a headache from not eating carbs or gluten if your body is accustomed to it?  

After a week I was able to function a little better. I was able to eat and move around. I tried to go work that week, but at that time I was working at a daycare and couldn't handle working with the lights or the loud noises. I ended up going home early that day and not returning to work until Friday.  I went to the doc that afternoon, and I got some Tramadol to help with my headaches. I took my first does Friday night and Saturday I was finally able to start fully functioning. I started rotating between Tylenol and Tramadol until the Tylenol was the only thing I need to manage my headaches.  

Now, while the extreme intensity of my headaches did  not get to migraine status after that week, I still suffered headaches everyday.  I had drifted away from ibuprofen because I thought that was the reason my head hurt so bad, I didn't want to go through it again. Also since I have Celiacs, ibuprofen isn't good for you due to the possible damage in your stomach, and my stomach is already damaged. So I switched to Tylenol for almost all my headaches, unless it got to be too extreme. (Disclaimer: I do not recommend taking either of these on a regular basis. If you have to take medicine everyday  to manage pain like that, there is a reason. Don't let anyone tell you that they can't find a reason!)

So minus managing my headaches with pills like I did everyday before I went gluten free, I had to move on to the next phase of my detox, night sweats.   It doesn't sound like that big of a deal, and unless you have experienced them, you won't understand them fully.  Every night I would wake up in the middle of the night it terrible terrible terrible sweats!  I got so bad that I would have to keep a spray bottle by my bed, with a fan on, and also get to the sink to splash icy cold water on my face until I could semi cool off.  This just started one random night and it happened every night. I slept with the window open, I didn't use any blankets, I had to take my pjs off at some point in the middle of the night.  This went on for a couple months. When I started looking into it, I found out that this happens when you detox from gluten.  It can last several months but it will pass. Also you feet can swell up, did you know that?  That is so random. This was not the worst part of the first half of my detoxing.  That's right there is more. 

The next phase, I transitioned too was body shakes, dry heaving, and my body not being able to decide between feeling hot and cold, and having bathroom issues.
 Two really fun facts: One, of course I had no idea why my body was doing this. Two, I never knew when it would hit me. I could be out at the store, I could be just chilling at home, it could happen right after I hate something, or if I didn't eat anything, or if was active that day or if I wasn't active that day. There was to rhyme or reason that I could figure out. I knew I was still detoxing off my gluten but didn't know what exactly that meant, I didn't know if it was because I ate gluten on accident, because if I did eat gluten, I had the exact same reaction. It sucked.  This lasted almost a year. I had to cancel events, I had to leave events early, I had to dress accordingly. I had to wear certain clothing, I had to know where the bathroom was at all times.  I would get high anxiety if there wasn't any bathroom available, if there was going to be more than a few close people. What if I had to run to the bathroom? How do I explain this? Its very awkward and embarrassing.
I had got to a point where I just didn't go out hardly at all. Even when I started getting better, I was so paranoid that under certain situations I probably caused a little of bit of my sickness due to stress.

Shortly after I developed a lot of sinus issues. That is a separate ball game that I did not even know about until recently.  At the time I just figured it was normal, sinus infections and pressure headaches.  I will get into that later in my journey.