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Confused About Borderline Test Result

samuella

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samuella Apprentice
samuella
Posted

I was diagnosed with celiac about four months ago via a positive skin biopsy for DH and a positive ttg blood test (over 100). I immediately went gluten free. I just had a follow-up ttg test and the results were borderline, 15.5. Obviously a LOT lower than it was, but still not *quite* negative. I also haven't noticed much change in digestive symptoms - hardly any at all, in fact. (And my DH was gone before I went gluten-free.) We did the test so soon because I haven't noticed much change, to see if my levels were still up - my GI said he'd expect levels to be at a negative level after a few months gluten-free and if they weren't then I might be getting glutened somehow. I only got to see my GP for the results so haven't had a chance to talk to my GI (and won't for a while) and she wasn't sure how to interpret it - she said it could just be I need more time for my levels to get all the way to normal.

So am I getting glutened somehow, just a little but enough to keep my results slightly high and keep my symptoms from going away, or do I just need more time to heal?

(I was diagnosed with IBS about 12 years ago so it's possible that I have celiac and IBS, but I was rather hoping for just one, please and thank you! But I know a lot of people with DH don't have digestive symptoms, so maybe my digestive symptoms are IBS after all?)

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

I think IBS is more of a symptom of unknown cause rather than a disease? It could be an intollerance to another food or additive? MSG causes me those crazy IBS symptoms.

It's possible you are still getting a bit of gluten somewhere? Did you replace your toaster, any scratched cookware, colander, tooth brush, wipe down the keys on your phone and keyboard or laptop? Are you still using the same cutting board you may have used for cutting bread or pizza, or meats with gluten seasoning?

Have you checked the spices and condiments you use..salad dressings?

I can't speak to the question of how long it takes for blood work to come back absolutely normal. Maybe someone that's been retested that soon after initial Dx could answer that? Your levels could be the "norm" for that time frame AND everyone's body heals at different rates, amount of damage to your system may enter in etc?

This seems to be a "learn as go" condition? Most Dr.s are not educated in diagnosing and treating Celiac. My own GI specialist couldn't answer a lot of the questions I had when I went in to recieve my Dx results. :blink:

Good luck to you and wishing you a speedy recovery.

beebs Enthusiast
beebs
Posted

Dom't forget to check lip gloss, liptstick, chewing gum, breath mints etc - these are all the things that caught me out!

mushroom Proficient
mushroom
Posted

If you are living in a household with gluten eaters, the possibility for cross-contamination is very high.

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