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First Time Here: Questions

whtswrongwithme32

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whtswrongwithme32 Apprentice
whtswrongwithme32
Posted

Hello,

   I am coming with questions. I have been having issues for a month or so now. It started with a really bad pain in my right side. I have one more test to rule out gallbladder. I have been nausiated, feeling full when I eat a few bites of food, having bizzare bowel movements. I had a colonoscopy and an endoscopy. Both came back "normal". I am anemic (that is not under control right now). I tire very easily. I also struggle with anxiety. My maternal Grandfather does indeed have celiac disease. My Mom passed away several years ago. She started her period when she was 16 1/2. Never got above 100 lbs and was 5 ft 3. She had severe anemia and depression. She passed away from a cancer that got into her lymphnodes and spread throughout her body. I have been studying up on celiac and glueten intolerance the last few days. I am wondering if it's not my gall bladder if maybe it's celiac or both? I did not have a biopsy done during the endoscopy, if it looked normal does this mean I do not possibly have celiac. Any experiences or info you have would be helpful.  

                                                                                                                  Me

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SMRI Collaborator
SMRI
Posted

Ask to have blood work done.  Depending on how they did the scope, they may or may not have found damage but that doesn't mean you are not Celiac.  Get the full IgA and IgG testing and see what they say.  Continue to eat gluten until you have your tests done though.

nvsmom Community Regular
nvsmom
Posted

It could be celiac disease.  Most celiacs look normal in an endoscopy, you need a biopsy to see the damage in most celiacs. Even then, the biopsy can miss up to 1 in 5 celiacs.

 

Ask for these tests:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG  (deaminated gliadin peptides)

EMA IgA total serum IgA (control test of immunoglobulin A)

AGA IgA and AGA IgG (anti-gliadin antibodies - and older and less reliable test)

 

Keep eating gluten until the testing is done. Get as many tests done as possible as these tests can miss people too so the more tests done, the greater the chance of finding the disease.

 

Good luck and welcome to the board.  :)

whtswrongwithme32 Apprentice
whtswrongwithme32
Posted
  • Author

It could be celiac disease.  Most celiacs look normal in an endoscopy, you need a biopsy to see the damage in most celiacs. Even then, the biopsy can miss up to 1 in 5 celiacs.

 

Ask for these tests:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG  (deaminated gliadin peptides)

EMA IgA total serum IgA (control test of immunoglobulin A)

AGA IgA and AGA IgG (anti-gliadin antibodies - and older and less reliable test)

 

Keep eating gluten until the testing is done. Get as many tests done as possible as these tests can miss people too so the more tests done, the greater the chance of finding the disease.

 

Good luck and welcome to the board.   :)

 

It could be celiac disease.  Most celiacs look normal in an endoscopy, you need a biopsy to see the damage in most celiacs. Even then, the biopsy can miss up to 1 in 5 celiacs.

 

Ask for these tests:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG  (deaminated gliadin peptides)

EMA IgA total serum IgA (control test of immunoglobulin A)

AGA IgA and AGA IgG (anti-gliadin antibodies - and older and less reliable test)

 

Keep eating gluten until the testing is done. Get as many tests done as possible as these tests can miss people too so the more tests done, the greater the chance of finding the disease.

 

Good luck and welcome to the board.   :)

Is there anything I can do to help with nausea in the meantime? Thanks. 

cyclinglady Grand Master
cyclinglady
Posted

Well, if it is celiac disease, my opinion (from someone who avoids drugs since I am allergic to many) is to tough it out until you get testing done.

If it is your gallbladder, keep eating gluten but try to avoid fatty foods (but temporarily since fats are good for you), eat more soups and easily digested foods. I hope you are getting a HIDA scan to determine functionality of the gallbladder. An ultrasound looks for gallstones. A HIDA scan finally caught my non-functioning gallbladder and I never had a single stone. I was at 0% (not releasing any bile) and it was infected and rotting.

Good luck!

whtswrongwithme32 Apprentice
whtswrongwithme32
Posted
  • Author

Well, if it is celiac disease, my opinion (from someone who avoids drugs since I am allergic to many) is to tough it out until you get testing done.

If it is your gallbladder, keep eating gluten but try to avoid fatty foods (but temporarily since fats are good for you), eat more soups and easily digested foods. I hope you are getting a HIDA scan to determine functionality of the gallbladder. An ultrasound looks for gallstones. A HIDA scan finally caught my non-functioning gallbladder and I never had a single stone. I was at 0% (not releasing any bile) and it was infected and rotting.

Good luck!

I am supposed to get a HIDA done, but I do not meet my Primacy Care CNP until September 4th (before this I never went to a doctor unless to have a baby lol) and am going to be waiting to see her so she can order it as well as discuss all these issues with her. It's frustrating I had pain so bad I went to E.R. They found nothing referred me to an O.B. He did alot of tests and couldn't figure it out either. So then he had a specialist meet with me who did a general xray (but not the HIDA) of the gallbladder, the endo, and the colonoscopy. The prep for the latter procedures had me feeling the best I have felt in a long time. The specialist did state that I needed to have a HIDA scheduled though. After finding nothing they sent me home to return to my "regular diet". Which I am on a budget with two youngsters so u can imagine from there..lol...and now my symptoms are all returning. I know it's not too far away, but feeling like this makes it seem super far away (sept 4th). Thanks for the advice though. I have noticed fatty foods bother me, but also most of the time they have glueten as well so it's a toss up. 

nvsmom Community Regular
nvsmom
Posted

Is there anything I can do to help with nausea in the meantime? Thanks. 

I'm the wrong one to advise you on that. Luckily I am rarely nauseated, and if I am then chances are I'm pregnant.  ;) LOL

 

I just know the usual tips for dealing with nausea: ginger (tea or ginger ale), gravol, and homeopathic remedies for nausea (we've use a good one for motion sickness - occuline I think?).

 

Perhaps start a new thread in this forum or in the "Coping With" forum to ask advice specifically on how to help with an upset stomach.

 

Good luck.  I hope it's not so bad for the entire challenge.

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