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A Few Well Wishes Needed


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19 replies to this topic

#1 Rowena

 
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Posted 06 July 2013 - 12:33 PM

Well I've had radiology done to see if I've gall stones... No luck.  Now because I'm still having problems, my PCP is sending me specifically to a GI...He's asking the Gastrointestinal doc do a zillion tests, possibly including a biopsy to again get results for Celiac.  H pylori and allergies are all possibilities... I'm scared to death!  I've been looking for complete solutions for years.  So wish me luck and hope they find something!  Sometimes I feel like a Hypochondriac cause doctors can't find something, but I know I'm not!


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


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#2 1desperateladysaved

 
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Posted 06 July 2013 - 02:18 PM

I hope you will get some definitive answers soon, and will get some direction.

 

When your test is negative, it doesn't mean your symptoms are not there, it means that they cannot be defined yet.  Many of us have been told it was all in our head.  Now, I can tell you that mine was in my head, my tail, and all over in between.  Keep on looking, because it isn't without a cause.

 

Get well soon!  ***

 

D


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#3 Rowena

 
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Posted 06 July 2013 - 02:50 PM

Yeah my blood test for Celiac was negative, but that doesn't mean I don't have a gluten intolerance... Because I sure do...  If I didn't have a gluten problem, my cycle wouldn't have miraculously regularized when I stopped eating gluten... But I've got to figure out why I'm STILL feeling nauseous, and got soft sometimes diarrheatic stools.


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#4 w8in4dave

 
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Posted 06 July 2013 - 07:15 PM

Absolutely!! You are NOT going crazy!! You know your body!! If your experiencing something and they cannot figure out why then it does not mean it is in your head! It is something but they just cannot put their finger on it!! Good luck!! I hope you find the answer !!! Huggzz!! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#5 Rowena

 
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Posted 08 July 2013 - 02:25 PM

ARGH!  Just got the call from the GI to schedule my appointment... August 1st, I have to wait that long when I can barely eat anything?  NO FAIR!  I'm tired of not being able to eat without feeling sick... and I did actually vomit a bit yesterday!  SOMEONE HELP ME PLEASE!

 

I did get on the wait list for something sooner, but I doubt anything will happen.


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#6 kareng

 
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Posted 08 July 2013 - 06:38 PM

I know you had a baby not long ago. Could some of this be from hormones? They took about 6-7 months for me to get back to normal - I wasn't breast feeding. I think it takes a few months after you stop breast feeding. Just one more thing to think about?
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LTES

 
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#7 Rowena

 
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Posted 09 July 2013 - 02:01 PM

I asked my OB about it at my six-week pp appt, and he says no, which is why he directed me to my PCP in the first place... and they thought originally it could be gallstones because when they pressed on my gb I lept off the bed... Radiology showed nothing though... Wish it were as simple as hormones..

 

Edit:  Miracle of Miracles!  The wait list was worth it!!!! I got an appointment sooner!  Tomorrow at 1:45 US MST!!!!!!!!!! SOOOOOOOOOO Happy!


  • 0

Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#8 1desperateladysaved

 
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Posted 10 July 2013 - 01:54 PM

I hope you will get encouraging help.

 

D


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#9 Rowena

 
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Posted 10 July 2013 - 02:16 PM

*Sigh*  Here's what happened today:

Doc listened to my story.

Doc says, 'Well lets get you to the lab check your liver panel again.' (I'd recently had elevated enzymes...)

Doc says, 'Lets schedule you for an EGD and a colonoscopy'

I schedule appointments, get my labs done (which by the way, I had a HORRID phlebotomist or however you spell it...) and go home...

 

So basically, I know nothing more than what I did when I went in today... if the other tests show nothing, I'm going to be livid!!!!


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#10 Rowena

 
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Posted 26 July 2013 - 02:03 PM

Okay, well, I had my colonoscopy/endoscopy on Tuesday along with a CT scan and blood draws...  (And the CT scan I had the IV done three times cause my veins kept rolling away!) Anyway, SO FAR this is what I know.

My colon/EGD turned up okay, however they did do some biopsies. Only noteworthy thing on the biopsies from what the report says is I have a 'mild case of chronic esophagitis'.
CT showed a bit of my liver being 'thick'.
Blood tests still show elevated enzymes, and disaccharide tissue testing shows maltase, sucrase, palatinase are all abnormally high.

 

Still waiting for doctor to review results and decide what that means and what he'll do.


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#11 foam

 
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Posted 29 July 2013 - 09:01 AM

lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.


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#12 GottaSki

 
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Posted 29 July 2013 - 09:21 AM

Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 w8in4dave

 
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Posted 29 July 2013 - 06:41 PM

Absolutely!! Hang in there!! I wish you all the luck!! I know it is hard looking for a diag. But ya gotta do it!!! You may be Celiac or sensitive or what ever to Gluten, but you may have some other stuff going on! Just try your hardest to do what ya gotta do sweetie!! Huggs and good luck...


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Recovering Gluten Eater 

DX'd June 17th 2013


#14 Juliebove

 
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Posted 30 July 2013 - 01:46 AM

Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.


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#15 Rowena

 
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Posted 30 July 2013 - 11:13 AM

Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)

No, liver enzymes being elevated is a new thing, as of 3 months ago.  They thought it was cause I was at risk for pre-eclampsia, but I had my baby right after I had the first enzyme test done, and 3 months later, I still have enzymes high.  And yeah, I do have copies of all my results.  All my labs get put online on my patient portal and testing too, as long as its done through this hospital group.  So that's actually how I already know my results, my doc just hasn't called to tell me what his diagnosis is.

 

 

Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.

 

I'm only slightly overweight, but that's mostly cause of pregnancy, I'm still working off that weight, and its fading fast since I can't eat anything.  And good luck with the Colon/Endo prep. Its a beast!  (Though gotta say, the procedure itself was a piece of cake by contrast).  However, as for what you can't eat, that's awful!  I discovered a couple years ago, rosemary does the same thing to my mouth gluten does!  (It cracks the corners of my lips)  And it also makes my throat constrict.  Which means a lot of italian food is ruled out unless I make it myself.  I also think I have a problem with corn, plus I'm fairly certain dairy is giving me hell.  Obviously though there is something more since I'm still not well, and frankly, I cannot eat without being nauseated or achy.

 

lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.

What the heck are you going in that often for?

 

 

Meanwhile, I think I might call my doctor's office because this is getting absolutely ridiculous, I NEED to eat something more!  But physically my body is unable too, and now I'm tired, weak, sore, braindead... I'm pretty sure soon I'll be lucky to remember my own name!


  • 0

Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff





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