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should I get the endoscopy?


Madame Trixie

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Madame Trixie Newbie
First off, thank you so much for this page., it has helped me immensely in the last year. I need the  communities help me understand my test results and wether or not I should get a biopsy done. My t-Transglutaminase (tTG) IgA was <2 or negative, BUT my Immunoglobin A, Qn Serum was 64 Low. I have read that is can cause a false positive. "In some cases, the TTG IgA test result can be “false negative” – that is, results come back negative, even though celiac disease is actually present. False negatives can occur for various reasons, but the best known cause is a condition called IgA deficiency that people are born with. This immunodeficiency occurs in about one in 600 healthy individuals but is much more common in those with celiac disease." I have been gluten free for the last year and feeling a lot better.
It seems the next step would be the endoscopy and biopsy. How important is it to get a firm diagnosis of Celiacs for my health, if i just continue to eat gluten free? Thank you, Nicole

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kareng Grand Master

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."

 

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Madame Trixie Newbie

It does look weird. Let me re-post it.

First off, thank you so much for your web page it has helped me immensely in the last year. I need the community's help to help me understand my test results and whether or not I should get a biopsy done.

My t-Transglutaminase (tTG) IgA was <2 or negative, But my Immunoglobin A, Qn Serum was 64 Low. I have read that is can cause a false positive.

"In some cases, the TTG IgA test result can be “false negative” – that is, results come back negative, even though celiac disease is actually present. False negatives can occur for various reasons, but the best known cause is a condition called IgA deficiency that people are born with. This immunodeficiency occurs in about one in 600 healthy individuals but is much more common in those with celiac disease."

I have been gluten free for the last year and feeling a lot better. It seems the next step would be the endoscopy and biopsy. How important is it to get a firm diagnosis of Celiacs for my health, if i just continue to eat gluten free?

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    • trents
      Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks.  When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.
    • melthebell
      Will definitely keep you posted. We live in Japan and will fly to Australia for the endoscopy end of April so until then, for the next ten weeks, we will just start adding gluten daily. 2 slices of white bread a day is what the guidelines seem to say.    But I welcome advice from members here who have done successful gluten challenges. I know they are not always successful.    I have also read I should monitor his growth. Is that really a concern for 10 weeks of gluten consumption? He is growing and has always followed his curve but he’s no basketball player at 20-25th centile. 
    • trents
    • trents
      @melthebell, keep us posted. We are learning more and more about gluten disorders as time goes on. One of the things that has become apparent to me is that gluten disorders don't always like to fit into the neat little pigeon hole symptomatic and diagnostic paradigms we have created for them. There seems to be a lot more atypical stuff going on than we once realized.
    • melthebell
      Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 
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