Monday, August 30, 2010

two steps forward, one step back...

Ugh. Turn for the worse. Again.

The day after Duke, I (Amy) noticed her complexion going pale again. The dark circles around her eyes became prominent. And wouldn't you know, the poops went back to the yeasty kind. (if you don't know what that means, that's okay. Just trust me on it. I don't have the energy to explain it all. And face it- you're probably not THAT interested in hearing the variation of colors & textures of poop.) :) Discouraging.

But I was really posting to tell you all that some of the results from our Duke day are in, and most things that came back were normal. We are still waiting to hear back on some of the other tests, particularly the celiac bloodwork. (which I'm very interested in seeing what happens to those numbers after being gluten free for 6 months) However, one of her stools tested positive for giardia, a parasite. (I know! GASP!) Don't know how long THAT'S been in there!-- sounds kinda scary, right? But as I'm reading, I'm understanding now that it's a very common thing to have in your gut when you have these sorts of intestinal issues. And it's probably been in there for quite some time- more like a chronic giardia than an acute attack. And guess what? Giardia can cause loose stools, skin issues, live in your gut for months and months and "wax and wane." Many people don't ever know they actually have a parasite because their symptoms go away and improve for a little while before they return.

Anyways, as exciting as it may seem to figure out something that we can actually treat, it's most likely NOT the entire problem. But it's a part of the problem, and hopefully we'll see some more long-term improvement after we treat it with some medication this next week. Anyways, this may explain some of why her body's been trying to heal, but things seem to worsen spontaneously.

Who knows, though?! I'm so sick of thinking this may be "it" only to be heart broken again when things begin to improve and then fall apart again. I'm thankful, though, that it still seems like it's 2 steps forward and 1 step back overall.

I'm just waiting to wake up someday from this bad dream and it'll all be okay... and maybe my family will be able to eat gluten again. :)


  1. Let's hear it for somday ordering regular pizza and only worrying about the calories. I think that that day will come. Glad you are finally getting a comprehensive look at her case. Who would have thought??

  2. It's ok. You're doing all the right things. AND you're learning to cook all kinds of different foods! Leah and I had so much fun today! We'll go again soon. Do you want to go eat some gluten for lunch one day? Caroline can stay with Marc and Leah can stay with Paul and we'll go to Isabella's and eat BREAD!

  3. Every little step is a step in the right direction. One more thing that can be helped to make her better!! Yaaaaaaa! Keep hanging in there. One day it will happen. Things will be normal. Maybe a new "normal". Love y'all.

    Nanny & Papa

  4. Amy and Marc, I remember years ago (30 years)going to a a mountain climbing training class in Seattle. The topic was about purifying your water while being in the wilderness, or a foreign country. Any way, the speaker talked about giardia. on e quote I remember is that "giardia can cause "explosive diarrhea" . How's that for a description?

  5. oh Amy! I am so sorry. I had giardia when I first moved here and it did take awhile to get rid of. I really feel for Caroline. I love you love you and praying for you

  6. oh! maddening! sometimes i just feel completely furious with sin and the fall and stupid things like parasites and sickness and leaky guts! i'm pretty sure there were no giardia pre-fall...or if there were they were happy little bugs that brought joy and spontaneous rainbows to the world around them. oh wait...maybe that was unicorns...