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Waiting, And Feeling Worse



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 constantly have days where I can't remember the word I want to use. My husband and kids say they are getting tired of figuring out what I want to say. Of course they laugh about it then. It does get frustrating. I also have not been diagnosed, but have damaged villi in the small intestine. I try to eat fresh food. And once in awhile I like my chocolate, and I have no clue if this is bad or not. The only reason I do this is because my stomach is crazy right now.

I just thought this brain fog comes with age. Hang in there.

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My daughter actually laughed out loud at me the other day because I couldn't remember the word for something.......and I snapped at her. :( I felt terrible about it, but it's so frustrating and it seems to be getting worse.

Your damaged villi weren't enough for a dx?
I've started taking a B-Complex vitamin, which supposedly will help with the brain fog, but I haven't been on it long enough to notice a result.
I've always heard that it comes with age too, but I'm only 33 and shouldn't have it this bad, I don't think!

Good luck to you, mirabella!

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Im only 44 and doing daily chores just makes me wanna scream. Everyday I clean the horse stahls and this usually takes 1 and half hours, but lately takes me 3hrs. Then I feel exhausted, so you are not alone. I have so many people think this all is my nerves. I try not to snap even though everyone seems to drive me nuts some days. I also dont wanna feel this way. I walk away lots of times. I either go swimming or take my paddle boat to the lake. I dont know what I am gonna do when winter comes.

Ya know the dr. did the endo and colon. on the 16 july and said I had the signs of celiac so I took the blood test and she biopsied. but all came back negative. and my follow up appt. is not till sept.16 My family doctor got so mad at the gi. family dr. told me to get probiotics and essentual enzymes to put the bacteria back in my stomach.
Try this maybe this will help you.

remember to be good to yourself, treat yourself to something fun.

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What about those b-complex? Is b12 in there? I am going to ask today for a b12 shot I hope this boosts my energy.
Does the complex give you energy? How long does it take to feel the relief?
Let me know if Im getting on your nerves by talking to much.

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mirabella - of course you're not getting on my nerves! (I do have to apologize for taking so long to reply though! Been a rough few days!)

I wish I could tell you how well the B Complex vitamins are working for me, but I have been VERY bad about remembering to take them. I think maybe I'll put them right next to my coffee maker, as that's the first thing I consume in the mornings. Maybe then I can remember to take them.

Did you talk to your doc about a B12 shot?

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Yes I did talk to my dr. about B12. Last Wednesday she took blood work because she said she couldnt give shot until she seen what my level were. Monday she called and said my blood work is in and I have an overactive thyroid. So yesterday I went for more blood work. I May have to go to a specialist.(endocrinologist) At least I know I am not going CRAZY. Have you ever had your tsh tested for thyroid??

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That seems somewhat bittersweet, huh? You're not crazy (which is good) but your thyroid is overactive (not good)........
I did have my TSH tested, and the results were within the normal range. But to my knowlege the TSH was the only thyroid related test they did, and I know there are others that should be done as well (FREE something or other). I know some other people had 'normal' thyroid results, and in fact were dx'd with thyroid issues just a short time later.
I hope you get the thyroid stuff under control quickly!

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I believe there are three together T3 free T4 free and TSH.
The strange thing is every two weeks I have been tested and this is the first for hyper. Another wierd thing is they started taking blood from the other arm because the vein was more productive meaning the flow was better. I wonder if this could be true??

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You got it - I don't believe I've been tested on the T3 free and/or T4 free - just he TSH.
I do believe the better flow thing from a different vein. Mine is in my right arm, and I always have to put up a fight to get them to go for the right arm when I have blood drawn. They always seem to want to go for the left, where the vein disappears as soon as the tip of the needle touches my arm. While the in right arm, the vein gets bigger and is really easy to see - I could probably draw the blood myself from that arm! LOL

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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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