Missa's latest diagnosis. (Celiac)'

So I have not blogged at all about this (up until tonight). Mostly because we have just been trying to figure out what is going on, and honestly I didn't want any opinions on what it might be. Missa has had her fair share of "bumps" and they just keep on coming. I didn't need a million "what if's" running through my head.... believe me I had enough of my own thoughts to deal with.
So for the past 7 months she has had a ton of diarrhea. (I will warn you now, this is going to be a poop filled post) it started back in January when our entire family was taken out 1 by 1. We all had (what we are pretty sure was..) the "Noro-virus" It was horrible!!! Anyway, for Missa it was all in the form of Diarrhea. I believe she vomited only once, very unlike the rest of us. It hits everyone different though.
Well of course it was crazy at first since she was sick.... but it didn't stop. I honestly didn't really think much of it at first, I just figured it was lingering since it was making it's way through the house.
It definitely slowed down a lot after we all got back to being "healthy". She was having Diarrhea about once a week. Honestly i just  kinda thought... "what the heck did you eat?"
I'm not going to lie, I kinda dismissed it for a bit, not thinking much of it. She was healthy other wise, and I brushed it off as things she ate. After awhile it started to get more and more. i made an appointment with her pedi. he mentioned this thing called "toddler diarrhea". Apparently toddlers can get diarrhea a lot just because, and out grow it. First of all this sounded crazy, but I looked it up and a lot of kids do. It still just didn't sound right. Her pedi. had us do a food diary to see if it was things in her diet, or maybe she had a food allergy. We couldn't pinpoint anything. We tried going dairy free for a few weeks with her and it didn't change a thing. He then had us get a stomach x-ray done. It came back showing that she was constipated (a lot). So our next game plan was Miralax. We did this every day in her morning juice for 2 weeks. Holy Moly!!!!!!! What a mess! It was extremely wet. (gross I know... sorry, I warned you!) She ended up with the worse rash i have ever seen. My poor baby girl cried her self to sleep on her belly in the middle of the living room on a towel with her naked bum in the air. I felt horrible!!!!!!! That's when I decided "screw the freakin' miralx, we are done with that!" I called her pedi. in the a.m. and told him I wasn't doing it anymore, and he agreed. We decided together then to see what the next few days brought... with any luck the miralx and all that wet mess, had cleared out the constipation, and we would see some normal "stools" soon. Given the x-ray had shown constipation, this seemed like it should have worked and we would see results within a few days. No such luck :(    Still lots of diarrhea! Of course I called her pedi. again. This is when he set us up with a G.I. specialist at Dartmouth Hitchcock http://chad.dartmouth-hitchcock.org/pc/dh_manchester.html. (Which happens to be where her pediatric cardiologist is also). They were very fast at getting us in. Within days we had an appointment. At first I was disappointed, I just felt like we were getting no where, and I heard those words again.."toddler diarrhea". I knew it wasn't that. I also heard "maybe she needs more fiber"...."maybe she needs more pro-biotics". All I could think at this time was "maybe you don't have a damn clue!!" I was just getting frustrated.
I do have to stop for a minute and give our pediatrician some major credit, because the man is amazing. He really did work awesome with us every step trying to figure this out, and he knew I wasn't going to quit. Also, if it wasn't for him we probably still wouldn't know she has a heart condition, because other pediatricians in the practice told us straight out, they would have just dismissed it as a simple "quiet murmur". The man is great at what he does, and I hope he doesn't retire until my kids are all grown!
Also the G.I. specialist from CHAD, as much as I was getting frustrated, she really is getting us answers...unfortunately blood work sometimes takes longer than one would like to get results. Yes we had blood work done, a lot. Also I had to get 4 different stool samples, and you can't get the sample out of a diaper, because something in the diaper effects the sample. MmmHmmm... try doing that with diarrhea. Was a week of messy fun and a few different trips back to the hospital lab to deliver.
As for the blood work... "no news is good news". My father in-law stopped by about a week after she had the blood taken and happened to ask about it. I told him (like I just said) "no news is good news, and we haven't heard anything. That night while I was out and daddy was out back in the yard, the G.I. specialist left us a message saying she wanted to discuss blood work results. **GULP** Now it's 9pm when we hear this message and of course the office is closed... sleep on that right!?
Turns out her counts were high and she was positive for Celiac Disease. We were told they are 99% certain she has it... however in order to 100% confirm, you must get an upper endoscopy done. Which is a biopsy of the small intestine. So as of now, we are waiting on that. The G.I. specialist is meeting with her pedi. cardiologist because she will need anesthesia for this, which makes it a "higher risk" procedure with her heart condition. Chances are this will be done at Children's Hospital in Boston because of her heart. Honestly I would feel better that way anyway.
In the meantime we can't change anything in her diet because it will mess with the biopsy results. There is no cure for Celiac. You keep your symptoms under control with a life long gluten free diet. Talk about a major change.... some may not think so, but when you have never thought of something like that and you now have to do this, not because you feel like going on some "cool new health kick" but because you have to in order to keep your babies health under control, it can be overwhelming. We have to change what our whole family eats... well for the most part anyway, because obviously that would be easier than keeping things away from her or telling her she can't have something the other kids are having. As far as the "health kick" some people try, well, it can be hard to make a gluten free diet healthy if you don't do it right.
As of right now the Dr. is thinking the endoscopy will be done in Sept. Although, I will probably be calling this week to see if we can get things moving. The poor girl can't eat anything without telling me "my belly hurts" and exploding everywhere minutes later :( details... yup, but thats where we are at.

Yes this was a long post... But summing it up in a "long story, short" deal wasn't working for me, so I went with the long version.

Our poor girl is going to have a specialist for every part of her little body. Praying for some relief for our baby girl as soon as possible, please pray for her!