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Confused- Please help

adobs80

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adobs80 Rookie
adobs80
Posted

Hey guys, I am super new here so I hope this is the right place. I am really confused about my results. I had an endoscopy and colonoscopy due to bowel problems and dry heaving (also a cancer survivor so they jumped on the tests). Anyway, The endocscopy came back with blunting of the duodenal in my small intestine indicating celiac. The biopsies were tested for bacterial infections and I do not have any. However, I have had 2 negative blood screenings so the doctor doesn't think it is celiac. Has anyone been through this? what else could it be if not anything bacterial? I have read that the biopsies are more accurate than the blood. Any feedback pleae, I am so confused and tired of being sick.

 

IGA Serum result 126 - ref range 81-463

tissue transglutam AB (IGA)  result <1 - ref range <4

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GFinDC Veteran
GFinDC
Posted

Hi,

It looks like they gave you only the typical screening test ttg IgA.  That ttg-IgA test catches a lot of people with celiac but not all.  You could ask them to the full celiac panel.  The full celiac panel  includes DGP IgA and DGP IgG, plus anti endomesial IgA and total serum IgA.  You've had the total serum IgA and it is good, so your body does make IgA antibodies.

There are members on the forum who were negative on all the anitbodies tests but did show positive on just one.  So we aren't all the same even though doctors like to assume we are.  You have to stay on gluten for the testing to work.  It may help to search for a local celiac group and check their ideas of a good doctor for celiac.

Welcome to the forum! :)

cyclinglady Grand Master
cyclinglady
Posted

Yeah.....I am one of them.  I only tested positive to the DGP IgA (biopsies revealed Marsh Stage IIIB).    In fact, even in follow-up testing, I continue to only get a positive on the DGP IgA (when accidentally exposed to gluten).    The screening TTG IgA catches most celiacs, but not all.  Then there are about 10% of celiacs who just test negative to all the blood tests.  You can see based on this diagnostic algorithm:

Open Original Shared Link

Ask for the complete panel.  Even if negative, trial the GF diet.  

I hope you feel better soon!  

adobs80 Rookie
adobs80
Posted
  • Author

Thanks guys! I didn't even realize that there were more tests until checking out this site. He gave me these exact same tests again yesterday and I am waiting for the results, but I predict another negative. I am not sure why he keeps going only the iga. I will definitely ask for the full panel and I htink a new doc might be in my future since he doesn't seem to know what tests to run. He is a GI doc so I thought I was in good hands. Thanks again for sharing your experiences.

Plonkers Rookie
Plonkers
Posted

All GI doctors are not celiac competent.  I had to go to three to get the full panel and I was already gluten-free by that point.  Stay on gluten if you think you can get the tests.  Even if they do come back negative, it sounds like you should try going gluten-free to see if it makes a difference (but only after tests).  Like you, I think biopsies are more accurate since there can be false negatives with blood work.  Maybe you should switch to a GI who has a lot of celiac patients - they are out there.

If you are interested you can find more research based on your pathology report.  Have you already learned about the Marsh scale?  Open Original Shared Link  and another with pictures Open Original Shared Link and a more technical one Open Original Shared Link

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      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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