Just Tested

[banjos]

hi everyone. i am new to all of this and looking for a little advice. i was tested for celiac, my dr. said it was a three panel test and two were negative but one was mildly positive. she said it was a 21 and negative is 19 and below. i've been searching the forum for others experiences with having tests come back as mildly positive or weakly positive. most seem to know the names of the tests (igg iga etc) but i didn't think to ask her. so she said that while she doesn't think i have celiac disease she wants me to get the biopsy done because of my very consistent low vitamin d levels (i'm on and off of very high doses to keep it up)

so it seems a little extreme to go through the biopsy for a weak positive. i'd be interested to hear other more experienced peoples opinions on if i should bother with the biopsy or maybe just try going gluten free for a little while? i'm pretty confused.

thanks in advance!

[Skylark]

If I were you I'd go on with the biopsy. It would help if you knew which test but it's kind of hard to get a false positive celiac test. Sometimes there is a low positive test but a biopsy can turn out to be really clearly celiac.

I would want to have the extra information from a biopsy. I mean, what if there is autoimmune damage?

[Bubba's Mom]

  On 4/9/2012 at 3:36 AM, banjos said:

hi everyone. i am new to all of this and looking for a little advice. i was tested for celiac, my dr. said it was a three panel test and two were negative but one was mildly positive. she said it was a 21 and negative is 19 and below. i've been searching the forum for others experiences with having tests come back as mildly positive or weakly positive. most seem to know the names of the tests (igg iga etc) but i didn't think to ask her. so she said that while she doesn't think i have celiac disease she wants me to get the biopsy done because of my very consistent low vitamin d levels (i'm on and off of very high doses to keep it up)

so it seems a little extreme to go through the biopsy for a weak positive. i'd be interested to hear other more experienced peoples opinions on if i should bother with the biopsy or maybe just try going gluten free for a little while? i'm pretty confused.

thanks in advance!

I'd get the endoscope. Your blood test might be mildly positive, which might not keep you from consuming gluten? If you get the scope you can get a better picture of whether this is affecting your health?

If you decide to not get the scope..will you go gluten-free..or wait until there's more damage and a higher test score(some Dr.s actually recommend this!)? If it was caught early you will have saved yourself from all sorts of health issues.

[banjos]

thank you for the replies!

my thinking is that regardless of the endoscope i will go gluten free for 3 months and see how i do. i feel like i've read so many experiences where people have had the endoscope and it turns out negative yet they go gluten free and feel so much better. i almost feel like the weak positive blood test and my symptoms are enough to warrant going gluten-free yet maybe if i get negative endoscope it would deter me from going gluten-free (i hope that makes sense!)

i actually have a best friend who is gluten intolerant and has been telling me for a while that she thinks something is up with me and gluten. she and my dr. both have said how you feel off gluten as opposed to on is probably the biggest indicator of what you should do.

also, i feel like not all of my symptoms are exactly what you would see on the celiac list of symptoms. so i think it's been hard for me to actually admit that maybe this is what's going on. and maybe i think i feel better than i actually do? like once i go gluten-free i will actually feel good and realize how bad i am feeling now. kind of like how you get used to feeling bad?

[banjos]

oh and i just talked to my dr.'s nurse and she said the test that was weak positive was the Deamidated Gliadin IgA. i have a 21 and 19 or less is considered negative.

is this a pretty sensitive test?

[nora-n]

this is a new and very specific test.

Now were you off gluten off and on beforehand?

That could explain the low numbers.

[banjos]

the only time i was ever off gluten was for a week when i did this clean eating cleanse (i basically ate protein, veggies, fruit) no dairy no bread. i do actually remember feeling kinda crappy for the first two days but then felt amazing the rest of the week. (ha! maybe that should be a good indicator!) but then went back to my normal eating after that. i would say that was like the first week in march.

[Skylark]

  On 4/9/2012 at 2:31 PM, banjos said:

thank you for the replies!

my thinking is that regardless of the endoscope i will go gluten free for 3 months and see how i do. i feel like i've read so many experiences where people have had the endoscope and it turns out negative yet they go gluten free and feel so much better. i almost feel like the weak positive blood test and my symptoms are enough to warrant going gluten-free yet maybe if i get negative endoscope it would deter me from going gluten-free (i hope that makes sense!)

No, you can't just go gluten-free for three months and see how you do. If you decline the endoscopy you must accept that you have celiac disease because the DGP test is 98% specific. You will be strictly gluten-free for life.

[banjos]

  On 4/9/2012 at 4:17 PM, Skylark said:

No, you can't just go gluten-free for three months and see how you do. If you decline the endoscopy you must accept that you have celiac disease because the DGP test is 98% specific. You will be strictly gluten-free for life.

thanks for your reply! i understand that you can't have the endo once gluten free or rather you would have to go back to eating gluten to get the correct results from the endo. but what i mean is that i would go gluten free to see how i feel - if symptoms subside then i would remain on the gluten free diet.

but you are pretty much saying that even the weak positive test indicates that i should be on a gluten free diet?

[Skylark]

The weak positive is still likely an indicator of celiac disease. I misspoke earlier because I missed that the test was DGP-IgA rather than IgG. The specificity on that one is not as high as some of the other tests unless you are IgA deficient. Are you? If you have normal total IgA the specificity is more like 85%.

As I said, if you decline the endoscopy you need to be prepared to live as if you have celiac disease. You can't just say "I don't feel much different so I'm going to eat gluten again". Without knowing for sure whether or not you're celiac eating gluten risks all the problems of untreated celiac like other autoimmunity, osteoporosis, cancer, etc. If I were you I'd get the endoscopy now so you know for sure what you're dealing with.

This IS indication of your immune system recognizing gluten, no matter what the endoscopy results are. You also have to make a decision as to whether you are interested in eating gluten given that your immune system is reacting to it.

[Bubba's Mom]

If you test positive it's a good indication that you should be gluten-free? It would be good to have the scope now though, because it could show if there are other things going on? It also shows the state of your intestine right now. Sometimes they find ulcers, or other things that should be treated so that you truly get well on the gluten-free diet.

If the scope shows no damage..that's great! It means the Celiac was caught early.

[pain*in*my*gut]

The DGP test is often positive before the TtG. Mine was 89 and my TtG was normal. My Endoscopy was normal, and my GI dismissed me....nothing wrong. My rheumatologist took one look at my DGP and said I had Celiac, no doubt. Biopsies are not accurate unless you have extensive intestinal damage or you get lucky and they happen to biopsy a bad spot. I have 4 of the 5 criteria (positive bood test, positive genes, symptoms consistent with Celiac, and positive response to gluten free diet). It would be pretty ridiculous to just say I don't have celiac just because they didn't get anything on biopsy!!!

It sounds like you may have latent celiac, which means your body hasn't done too much damage to your gut yet. Try going gluten free and see how you feel. I bet you will be pleasantly surprised!

[banjos]

thank you all for your replies. it's making more sense now. i've decided to go ahead and get the biopsy. i have it scheduled for next week. i also think that regardless of the results i will be going gluten free.

[banjos]

just had my endoscopy earlier today. wasn't as bad as i thought it would be. i'm still a little loopy and tired but i feel ok.

i got the initial results that say:

1. irregular z line

2 mild scalloping of the mucosal folds in the second portion of the duodenum - biopsied

they said i need to await pathology results and wouldn't confirm or deny celiac.

so it looks like tho that scalloping is an indication of celiac?

[pricklypear1971]

I would wait for the biopsy report, since they are looking for microscopic damage. However, they do see damage...milk and soy are sometimes listed as alternative causes of damage on lab reports. If you had a positive serological test that was Celiac specific I'd say yes, you probably already have your answer.

Glad you feel ok, hope the loopy goes away soon.

[Skylark]

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

[banjos]

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

[banjos]

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.

[beachbirdie]

  On 4/27/2012 at 7:50 PM, banjos said:

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.

[Skylark]

  On 4/27/2012 at 7:50 PM, banjos said:

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.

[pricklypear1971]

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.

[banjos]

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?