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Confused with my blood results , help please

Frankie13

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Frankie13 Newbie
Frankie13
Posted

 

Hi, I was made a biopsy and apparently was normal only with a mild chronic inflammation, before the biopsy the analytical blood test was made in which I was positive in anti endomysium and antigliadine, I went with an experienced in celiac doctor, and he told me that the results looked very rare and should test me again blood tests, weeks ago before i see this doctor I went into a gluten free diet like 1 month not very strict but avoiding a lot but since I had to do again blood tests I spent three weeks eating gluten, starting the second week I started to feel sick, diarrhea returned, uncomfortable general feeling that i associated with gluten i think, everything was wrong, I noticed also that I get sick very serious flu whenever I go gluten such as flu symptoms, then the three week wait ended and the samples were taken, immediately I gluten free the flu dissapeared and I started to feel much better diarrhea, headaches, decreased fatigue, today after 15 days give me the results of the analytical and everything appears negative (TTG, Anti endomysial, Anti gliadin, Vitamin B12) but there are two results which read:

"The test detects antibodies to deaminated gliadin peptide" (IGG and IGA)

Do not know what this means, I read that is also another test but if its the only test positive I do not think it's likely to be celiac.

Why my anti endomysium and gliadin came out positive before and not now? (Does it affect the fact that I do many periods of leaving and returning to gluten?)

I hoped it was celiac to start a strict diet and improve, because now that I'm doing it I'm feeling really much better and very different, I do not think that my mind is playing with me but again I dont know I feel very overwhelmed and sad about this, all the results suggest that I'm not celiac and I have fear that it could be anything much worse. I hope someone who knows about this or has heard something similar can help me. Thank you very much, sorry for my english haha

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cyclinglady Grand Master
cyclinglady
Posted

It sounds like you had a few positives indicating celiac disease, but your biopsies failed to confirm it.  The small intestine is vast.  It is the size of a tennis court when stretch out.  So, it is easy to miss damaged areas.  GI doctors are supposed to obtain four to six tissue samples at certain locations.  Often just a "visual" check reveals nothing.  The biopsies are critical for a celiac diagnosis.  Did you get copies of the lab results?  Did they follow British and American Gastroenterology procedures?  

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It also sounds like you went gluten free and then back again for testing.  That can cause negative test results.   The celiac blood tests require you to be eating gluten daily for a period of 8 to 12 weeks.  It takes that long for antibodies to build up.  This period of reintroducing gluten once you have been gluten free is called a gluten challenge.  

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I hope this helps!

GFinDC Veteran
GFinDC
Posted

Hi Frankie,

Yes, going on and off gluten can cause problems with the antibody tests.  The usual requirement is to eat gluten every day for 12 weeks before getting tested.

First the blood antibodies are tested,  If antibodies are positive then an endoscopy is done.

Many people make the mistake of stopping eating gluten before being tested.  It's not rare for that to happen.  Some doctors don't understand the immune system and will tell people to stop eating gluten before testing also.  That's a bad idea.

Welcome to the forum Frankie! :)

 

Frankie13 Newbie
Frankie13
Posted
  • Author

Thank you both, Yes maybe my on and off gluten free diet is affecting, but I cant feel the same again, maybe my doctors will say im not celiac but i have to be on a gluten free diet (not 100% strict because I live with my family and its impossible when we go out dinner or something but at least I dont feel as I do when I eat gluten. Thank you for your answers!

jmssl Newbie
jmssl
Posted

I think you know yourself why its negative

You did not follow guidlines that say eat gluten for 3-6months prior to biopsy

So unless u follow this and get tests done again after eating gluten plenty daily for 6months u  get proper disgnoses.

At least if you Get negative then also.. You will know it means negative. And not think it was something to do with eating gluten free. 

Good luck with finding out the cause of  issues wether its gluten or something else

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