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Waiting, And Feeling Worse

Posted by ohsotired, 10 August 2008 · 576 views

Diagnostics
I had a follow up with my GI doc on Thursday, and he said that everything is 'normal' (colonscopy/biopsy, stool samples, blood work). We talked about the high values on some of my previous blood results and he said it was really nothing to worry about, but that we could do testing for B12/Folic acid levels.
I pushed for the rest of the Celiac Panel blood tests, and his response was that the TtG IgA was the most sensitive, but that we would go ahead and do the rest of them anyway. (Gee, thanks. Why didn't we do them all in the first place?)
He also mentioned gene testing, but that he'd have to research it since he didn't know much about it.

His MA came in to do the blood draw, and told me she thought she'd just go ahead and take two vials of blood since she didn't know how many they needed - they'd never ordered these particular tests before.
This tells me that this doc A) has never dx'd or possibly even treated a Celiac patient before and B) he's not terribly knowledgeable about it.

So I sit here waiting for test results. Feeling worse. Not so much in my gut, although that has been somewhat troublesome over the last few days (as usual). Now I have something new. Joint pain.

It started a week or so ago with me waking up one morning with my jaw locked into place (right side). I had TMJ in my late teens, but it was primarily the left side that was affected, and it never hurt like this or locked up completely.
After some gentle maneuvering and a loud pop, I managed to unlock it and get it moving. It's been painful ever since, and has locked momentarily on a daily basis - I'm always able to get it moving again with a little help.

Knees and hips are not happy either. There's been what I would call a low grade pain in both knees and both hips for probably two weeks now. But yesterday? Yesterday was BAD. I felt kind of like a 98 year old woman might feel - or maybe I could liken it to being hit by a truck? I don't know, I just know it HURT. And the pain felt like it was deep in my bones.

I fell asleep around 4pm yesterday afternoon, and napped off and on until around 10pm. Then I got up, ate something, and went to bed and slept until around 9:30 this morning. We're looking at almost 16 hours of sleep!
When I got up this morning, my knees & hips were only slightly pained, but the lower half of my back felt like my vertebrae were fused together.

I've also been running a low grade fever for at least a week. Haven't seen it go above 100.1, so I don't know how concerned (if at all) to be about it, but it seems too coincidental that all these things started happening at about the same time.

I also feel like my brain fog is getting worse. I've noticed I'm having trouble with remembering words for things. Things that come up in regular conversation. I'll go to ask my husband or my daughter "Do you seen the.............." and can't remember the word for the thing that I'm looking for. This morning I started a cup of coffee without putting the cup under the spout (single serve coffee machine). I just stood there and watched it pour into the drip tray.

My husband is actually encouraging me to start the gluten free diet (tomorrow), but I feel like I should wait to make sure my GI actually ran all the tests this time around. But part of me just doesn't care. I just want to feel better.
I don't know if my husband actually thinks it will help me to feel better, or if he's just tired of hearing me complain.
I'm trying not to complain at all around him, because I feel like he doesn't want to hear it and thinks I'm being over dramatic, but it's not easy.

I'm rambling.......so I guess that's it for tonight.

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I can never understand this!! What is there deal, why cant they just take it from the arm we say!! Gosh just thinking about it makes me angry. My dr has been really patient with me. She sees me every two weeks to check on me. When she gives me my blood work paper, I can go to whom ever I want. There is this little independent place and there is one lady who draws the blood. She is fantastic. I think this is why I have gone back to school. We need more sympathetic people in the health field. Do you work? or school?
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I really wish I understood this too, but I don't.
I need to find a new GI doc; this one isn't real versed in anything Celiac.
I just started working full time again - and it's been quite the adjustment period.
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Ive decided to go back to school, health field. I dropped to one class because this is so hard. Not feeling well is horrible you dont know how your gonna feel from one day to the next
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