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Just Tested


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#16 Skylark

 
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Posted 17 April 2012 - 05:39 PM

Scalloping is common with celiac. You'll have to wait for the full report though.
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#17 banjos

 
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Posted 18 April 2012 - 06:53 AM

i'm curious if it is possible to have scalloping yet the biopsy be completely normal? has anyone had that experience?
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#18 banjos

 
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Posted 27 April 2012 - 11:50 AM

just spoke to my dr's nurse. and i have to say i'm a little frustrated. they said that based on my endoscopy i am probably negative for celiac (which is fine if i completely believed them). she said that i basically have ibs and shouldn't eat gluten OR dairy. obviously, i need to talk to my dr. i also asked for them to send me a the diagnostic report.

i'm just feeling so confused! i feel like i've been thrown into this - i was tested on a whim from my dr and then to get a mild positive blood test and have the visual scalloping - i would have never thought that i was gluten intolerant before getting the testing done. but now that i am not eating gluten i am already seeing a difference in symptoms. i feel like i didn't realize how bad i felt until now. so this kind of feels like one big mind game - like is something wrong with me for real or am i just imagining things?

also, i asked how many samples they took from the endoscopy and she said two. from what i've read that doesn't seem like enough to definitively diagnose positive or negative.

i'm not going back on gluten and will be going off dairy as well (although i'm not exactly sure why yet - at least with the dairy). but i feel like after reading what so many others have gone through trying to get a proper diagnosis that i'm dealing with dr's that aren't as up to speed or educated on diagnosing this. like maybe another dr. might interpret my results differently. and that's another thing - aside from the gene testing it seems as though diagnosis is left up to the dr's to interpretation - like there is this huge grey area in diagnosing.
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#19 beachbirdie

 
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Posted 27 April 2012 - 12:32 PM

just spoke to my dr's nurse. and i have to say i'm a little frustrated. they said that based on my endoscopy i am probably negative for celiac (which is fine if i completely believed them). she said that i basically have ibs and shouldn't eat gluten OR dairy. obviously, i need to talk to my dr. i also asked for them to send me a the diagnostic report.

i'm just feeling so confused! i feel like i've been thrown into this - i was tested on a whim from my dr and then to get a mild positive blood test and have the visual scalloping - i would have never thought that i was gluten intolerant before getting the testing done. but now that i am not eating gluten i am already seeing a difference in symptoms. i feel like i didn't realize how bad i felt until now. so this kind of feels like one big mind game - like is something wrong with me for real or am i just imagining things?

also, i asked how many samples they took from the endoscopy and she said two. from what i've read that doesn't seem like enough to definitively diagnose positive or negative.

i'm not going back on gluten and will be going off dairy as well (although i'm not exactly sure why yet - at least with the dairy). but i feel like after reading what so many others have gone through trying to get a proper diagnosis that i'm dealing with dr's that aren't as up to speed or educated on diagnosing this. like maybe another dr. might interpret my results differently. and that's another thing - aside from the gene testing it seems as though diagnosis is left up to the dr's to interpretation - like there is this huge grey area in diagnosing.


You are correct, two biopsy samples are insufficient. The damage can be patchy, and with so few samples they easily miss it. Also, there is a lot riding on the skill of the doc who takes the samples, as well as the pathologist who interprets. If I heard "probably" negative, I would feel very insecure.

If you feel good off gluten, sounds like a good thing.

Do you *need* a doctor's diagnosis for a particular reason? If so, sounds like a new doc might be more helpful. If not, and gluten-free living takes care of your symptoms, that sounds like a good choice.
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1999 - Hypothyroid
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2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#20 Skylark

 
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Posted 27 April 2012 - 02:51 PM

i'm just feeling so confused! i feel like i've been thrown into this - i was tested on a whim from my dr and then to get a mild positive blood test and have the visual scalloping - i would have never thought that i was gluten intolerant before getting the testing done. but now that i am not eating gluten i am already seeing a difference in symptoms. i feel like i didn't realize how bad i felt until now. so this kind of feels like one big mind game - like is something wrong with me for real or am i just imagining things?

Trust yourself! It's not unusual to realize you always felt kind of bad when you go off gluten. Enjoy feeling better. :)
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#21 pricklypear1971

 
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Posted 27 April 2012 - 04:35 PM

And if it's "probably negative" based on the naked eye that's not diagnostic. They look for microscopic damage when the lab reviews the samples and writes the report.
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#22 banjos

 
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Posted 27 April 2012 - 05:14 PM

thanks everyone. i guess i don't *need* a solid diagnosis. the only thing that concerns me is that celiac is genetic and i do have a son. although he eats a gluten full diet and has no problems that would warrant concern.

part of me wanted them to say yes, it's positive because then it makes it a little more real. but i am absolutely going to remain gluten-free for 3 months and see how i feel at the end of it.

the probably negative was based on the two samples they took from my small intestine. i haven't actually seen the report or even talked to my dr yet - the nurse (who didn't really seem to know much about it and just read the results off of a sheet of paper) let me know. so we will see what my dr says, i'm really curious as to why she is recommending no gluten or dairy if the test was negative?

also, with the blood tests - is it possible to have a complete zero of gluten antibodies? or does everyone have a little? i'm just wondering because my test was mild positive and maybe that's not that big of a deal?
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