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Blood Test Still + After 10 Months Gf?!?!

jen-schall

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jen-schall Rookie
jen-schall
Posted

:( hi, I was diagnosed in December after being gluten-free one month. I continued to be gluten-free and had antibody blood tests re-done in the spring which showed, reportedly, that I was still getting "significant" gluten. I did find out there was barley and oats in a nutrition bar that I had thought was okay previously (because I looked at it so early on in the diagnosis and didn't recheck!)

since that major bummer, I have been SO vigilant. now it is 10 months that I have been gluten-free and my antibody tests still show up as positive! ! !

has this happened to anyone else?

what do I do? I am not eating any gluten- and I know ALL about the hidden places, and I am not taking any risks, and even my make-up is gluten-free, and I don't know what more I can do.

someone please help if you can! I can handle being celiac and going gluten-free but if it never actually gets *better* (although I haven't felt sick at all!!) then what do I do???

:angry: Jen

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FreyaUSA Contributor
FreyaUSA
Posted

I don't know if your doctor has suggested this (are you seeing a nutritionist who is aware of celiac disease?), try documenting every single thing you put in your mouth (including brand names.) From toothpaste to water. Then, have either your nutritionist look at it or post it somewhere so that others who are aware (here on the board? I'm new here so I don't know the procedures yet, but it might help. :) ) Or maybe do both things. Also, where do you work? This may sound silly, but if you work in or near a bakery, you could be inhaling your gluten. Imo, you are getting into it somehow, it just might take some time to figure out exactly how. (And, if you're getting into it unknowingly, chances are others are or will to. Maybe some company isn't documenting their ingredients like they should be. :o )

tarnalberry Community Regular
tarnalberry
Posted

Well... _how_ high? I mean, if they've gone down 50%, maybe you're body is just slow at healing on this one. If they've gone down 10%, maybe it's time to have the GI dig really deep into those "other reasons" to have a higher IgG that I keep hearing about but have never heard anything _specific_ about...

lovegrov Collaborator
lovegrov
Posted

What's still high? One of the tests is very slow to fall. After 14 months of being extremely careful one of mine, I think the Iga, was still one point above the line. My doctor said to continue being careful but that I was doing a good job.

richard

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    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      The IGA TTG (aka, TTG-IGA) is the centerpiece of celiac disease blood antibody testing. A high value in this test indicates probable celiac disease, though there are other reasons (some other diseases, some medications and in some cases, even some non-gluten foods that can cause it to be elevated. And it is not unusual at all for other celiac antibody tests to be normal when the TTG-IGA is high. Normally, when the TTG-IGA is elevated, the physician will order an upper GI with biopsy of the small bowel lining to check for the damage characteristic of celiac disease. The biopsy is then sent out for microscopic analysis. This is to confirm the results of the blood testing and is considered the gold standard diagnostic test. You should not begin a gluten free diet until the endoscopy/biopsy is complete. This is very important because otherwise the results will be invalidated.  This article on celiac disease blood antibody tests might be helpful to you while you are waiting for feedback from the physician:  
    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      Thanks that's what I didn't know about soy hidden with wheat. I know it's autoimmune but want sure about sensitivity to corn or eggs. There's no tests for these which are non gluten is there? I have had gluten free tortillas pastas made with corn and have had eggs so I don't think it bothers me but I was curious if there was a test that does sure sensitivities to these non gluten items for gluten-free people. Thanks
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      And of course I get these results (the ttg iga marked high at 646 mg/dL) on a Friday in my portal, my doctor wasn't in, and now we are in the weekend—leaving me to have to try and figure things out on my own until sometime next week. None of the nurses at the office would talk to me. 
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      peptide iga, peptide igg, and ttg igg were all marked normal with limits noted as <15.0
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      Gliadin peptide iga was 0.7 U/mL Gliadin peptide igg was <0.4 U/mL IGA TTG was 646 mg/dL (marked high with limits noted as 40-350) IGG TTG was <0.8 UmL
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