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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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    • SilkieFairy
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      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
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