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Really Nervious - Help With Questions For My Gastro Appointment Tomorrow

jstanton8

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jstanton8 Newbie
jstanton8
Posted

I am so nervous! I posted the results of my celiac panel a few days ago. Here they are again in case some of you didn't see them:

Tissue Transglutaminase IgG AB 4 (reference range <20 units is negative, 20-30 units is weak positive and >30 is strong positive)

Tissue Transglutaminase AB IgA 10 (same reference range as above)

Gliadin Antibodies IgA 2 (same reference range as above)

Gliadin Antibodies IgG 1 (same reference range as above)

The doc didn't order a total serum IgA or the Endomysial Antibodies. Should I ask for those tests to be run? I really just want to have the endoscopy biopsy and get it diagnosed one way or the other, but it would be about $1500 out of pocket. I'd wait til we have better insurance, but I've been so sick for 3 years that I just can't wait to stop eating gluten if that is what is making me sick. I just don't know what to do! Are there any questions I should ask or tests I should ask for from those of you with more experience? Thanks in advance! I SO appreciate all the support!

Julie

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SaraKat Contributor
SaraKat
Posted

Those results look negative? My results were over 100 and one test was even over 400. I suppose if I were you, I would go gluten-free to see how you feel rather than doing a biopsy since your results look very negative. I am new to this though, so someone else might have a better answer.

Good Luck!

Oh, and I had the total serum IGA test and that one was actually normal!

jester Rookie
jester
Posted

I don't really have anything to add - will be watching the replies for my own appt coming up, though - but I just want to say GOOD LUCK!!!!

Maybe you could ask if they'd be willing to diagnose based on the results a gluten-free trial and then a gluten challenge? I could be wrong but I think others have mentioned some will do that, if the diagnosis is important to you. They might be willing to say gluten sensitivity instead of celiac disease or something. Just a thought.

cassP Contributor
cassP
Posted

my Ttg and Antigliadin results were similar to yours. and my total Iga Serum was deficient, which means my Ttg and Antigliadin results were inaccurate.

but my Endomysial Antibodies were positive.

the total Iga serum & Endomysial Antibodies are important tests to get!

BUT- this (and biopsies)- all depend on how much gluten you've been ingesting. you dont want to go thru all that if you havent been eating enough gluten- then the tests would just be inconclusive and a waste of time and money. so, ya- i dont know what you want to do with that.

i was pretty gluten lite for 10 years... and my doc only had me on a 2 week challenge- which im assuming wasnt enough for a solid test result. so im glad i didnt do the endoscopy. i think...

i wish i had been psychic enough to get all these tests done before i went on no carb diets, when i actually had D everyday... :huh:

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor may not diagnose based on dietary exclusion, resolution of symptoms and then symptom reoccurance when gluten is added back in but your body will. While having a doctor derived diagnosis can be valuable with the high rate of false negatives in testing in the end it's your bodies response that counts for the most.

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    • deanna1ynne
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      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
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