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Test Result Accuracy .. Please Help

Mady84

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Mady84 Newbie
Mady84
Posted

I am sorry I couldnt wait any longer I've been miserable for a year and even more after delivering my daughter 2 months back and I have been reading for hours online and getting different answers.

I have a lot of symptoms that looks like celiac ..

Lower abdomen bloating, gurgling and gas, tingling in my legs and arms, what feels like dizziness sometimes (which might be a lack of sleep too with the new baby well I don't really know where does all symptoms come from)

I had hpylori before and GERD later on and Zantac seemed to help.

I went to see a gastro 2 weeks after delivery because of stomach pain at night had an endoscopy and he saw some bile in my stomach and thought it caused it he took a biopsy too and said I was lactose intolerant! I am trying not to consume milk products since then and then my lower abdomen bloating started I went again and this time he tested me for celiac (no he did not take a biopsy for that before!)

I was tested for transglutaminase antibody IgA ant IgG with Normal results for both and no deficiency in the IgA with a 2.0 u/ml

However I have a friend with celiac disease who asked me to ask to be further tested because this test was not accurate for her (I am on a normal gluten containing diet)

My question is : is this test accurate ? Or should I keep on suspecting celiac and ask for more tests because now my dr is testing me for a stomach bug! Don't know which one thu I am so tired of going back and forth with 2 kids and a newborn to take care of!

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cyclinglady Grand Master
cyclinglady
Posted

The tTg tests (often given for initial screening) are very accurate for MOST!  Like your friend, my ttg was negative and only one DGP was positive!  You could ask for the complete panel, or wait for the results of the other tests you took (e.g. parasites, bacterial overgrowth, etc).  Lactose intolerance is very real and a majority of people have it.  So, get off all dairy products for now!  How is your gallbladder? You might need a HIDA scan.  I had a non-functioning gallbladder, but no stones!  

 

Here's the list of all celiac tests:

 

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysila antibodies) 
  • AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
  • endoscopic biopsy - 6 or more samples taken

Source:  NVSMom, Forum Member

 

 

I know you are overwhelmed and I am so sorry!  Please do not give up!  There is a reason your gut is bothering you!  

Mady84 Newbie
Mady84
Posted
  • Author

The tTg tests (often given for initial screening) are very accurate for MOST!  Like your friend, my ttg was negative and only one DGP was positive!  You could ask for the complete panel, or wait for the results of the other tests you took (e.g. parasites, bacterial overgrowth, etc).  Lactose intolerance is very real and a majority of people have it.  So, get off all dairy products for now!  How is your gallbladder? You might need a HIDA scan.  I had a non-functioning gallbladder, but no stones!  

 

Here's the list of all celiac tests:

 

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysila antibodies) 
  • AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
  • endoscopic biopsy - 6 or more samples taken
Source:  NVSMom, Forum Member

 

 

I know you are overwhelmed and I am so sorry!  Please do not give up!  There is a reason your gut is bothering you!

Thank you for your reply so I think I still have a chance of a false negative.

I had an ultrasound everything seemed normal gallbladder, kidney etc. but my Dr think there is an inflammation in my stomach, small intestine and colon. I think they are running the DGP test next along with testing for bugs but that would take a while and I feel that the stress of waiting is wasting all my energy.

cyclinglady Grand Master
cyclinglady
Posted

I always had a normal ultrasound on my gallbladder.  That test primarily looks for stones.  A HIDA scan checks the functionality of the gallbladder which is a reservoir for bile (bile is created by the liver).    Bile is squeezed out when you eat something like french fries!  If your gallbladder works on and off or does not squeeze enough bile out to digest your french fries or bacon, then you are going to feel sick!  Mine reached a point where it had 0% functionality and then started to rot (infected).  I had emergency surgery while I was on a business trip.  But I suffered for over 25 years with it!  As did the rest of my family -- it is a family curse!  

 

Your doctor did see some bile in your stomach.  Your gallbladder could be squeezing too much releasing way more bile than you need to digest whatever you have eaten.  A good sign is that you feel okay in the morning, but after eating, you start feeling pain the rest of the day.  Worse, if a heavy/fat-filled meal is consumed.  My Dad lived for 30 days on Pepsi and Chicken broth due to the pain just before his surgery.  They thought he had cancer due to his rapid weight loss, but it was his gallbladder.  Yep, he's one of seven siblings and six had non-functioning gallbladders.  

 

I am not discounting a celiac diagnosis.  That is still on the table!  

Mady84 Newbie
Mady84
Posted
  • Author

I always had a normal ultrasound on my gallbladder.  That test primarily looks for stones.  A HIDA scan checks the functionality of the gallbladder which is a reservoir for bile (bile is created by the liver).    Bile is squeezed out when you eat something like french fries!  If your gallbladder works on and off or does not squeeze enough bile out to digest your french fries or bacon, then you are going to feel sick!  Mine reached a point where it had 0% functionality and then started to rot (infected).  I had emergency surgery while I was on a business trip.  But I suffered for over 25 years with it!  As did the rest of my family -- it is a family curse!  

 

Your doctor did see some bile in your stomach.  Your gallbladder could be squeezing too much releasing way more bile than you need to digest whatever you have eaten.  A good sign is that you feel okay in the morning, but after eating, you start feeling pain the rest of the day.  Worse, if a heavy/fat-filled meal is consumed.  My Dad lived for 30 days on Pepsi and Chicken broth due to the pain just before his surgery.  They thought he had cancer due to his rapid weight loss, but it was his gallbladder.  Yep, he's one of seven siblings and six had non-functioning gallbladders.  

 

I am not discounting a celiac diagnosis.  That is still on the table!

After the stomach pain stopped they told me it might have been temporary because i had a long labour and it might have settled after my organs went back to place because I've never had a problem with my gallbladder before or surgeries. But thanks a lot for your time and detailed reply I'll try to wait for my test results and then might ask them to look for that too

nvsmom Community Regular
nvsmom
Posted

The rates for false positives in those tests can be as high as 25% for the tTG IgA, and 60% for the tTG IgG.  Conversely, the tTG IGA has a sensitivity between 75 and 95%, so it does catch most celiacs, but not all.  The tTG IgG is not nearly as sensitive.

 

This is where I got my info:

tTG IgA info on pages 10-12:  Open Original Shared Link

 

tTG IgG info:  Open Original Shared Link

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