My First Celaic Panel Lab Results

[Random Guy]

here they are:

Endomysial AB IGA Positive (Reference Negative)

Endomysial AB Titer 1:160 High (Ref Less than 1:5)

Gliadin AB (IGA) 43 High (Ref Neg <11, Equivicol 11-17, Pos >17

IGA, Serum 114 Normal (Ref 81-463 mg/dL)

TTG AB, IGA > 100 High (Ref Neg <5, Equivicol 5-8, Pos >8)

TTG AB, IGG - test not performed (why not?!?!)

so it looks like my labs are pretty out of whack (sorry if i'm being to technical)

but i don't know, since it's my first celiac panel, if it really means anything

my current plan is to eat all the pizza i can now (i have no symptoms) while i still can (sorry if that's like waving a drink in front of an alcoholic, really, i am sorry), and call a GI.

what's a good way to figure out if a GI is well versed in Celiac?

thanks

-rg

[Canadian Karen]

Yep, you got it......... the numbers don't lie!!!!

I can't really tell you how to go about finding a Gastro guy, here in Canada, we get referred by our GP.

Pig out while you can, and please, have a Whopper for me. At least I can live vicariously through someone else!!!!

Karen

[KaitiUSA]

Yes, from those results it's like almost definite you have it. The EMA and tTG are the best tests for celiac ..very accurate and sensitive so...you have it.

The tTG IgG was not performed but that does not matter because that is not as sensitive of a test as the tTG IgA

If you go to the home page of this site and scroll to the bottom you have a link to recommended doctors from other celiacs. This may help you find one near you.

Remember though, biopsies can rule celiac in but not out..I know it may be hard to realize you have it since you do not have symptoms but the numbers just do not lie.

[Random Guy]

ok katie,

so if a biopsy can't rule it out, are you saying that i will definitely not find out that i don't have it, or that i won't not find out that i don't not have it or not?

i checked the list, and there's no one listed on long island.

did i mention that i live on long island?

(for those not from long island, it's part of new york state. it's an island. and takes a long time to drive across it)

thanks

-rg

[Canadian Karen]

ok katie,

so if a biopsy can't rule it out, are you saying that i will definitely not find out that i don't have it, or that i won't not find out that i don't not have it or not?

Huh?

I know it's been too long of a day when I read a paragraph three times and still can't wrap my mind around it!!!

Karen

[cornbread]

I think RG's question pretty much meant, why bother with a biopsy? In his case, with positive bloodwork, all the biopsy could do is maybe rule Celiac in. If the biopsy was negative he could still have celiac disease, and based on the other tests, probably does.

I have the same question - my Dad just got his results back and had positive antibodies all around, plus double Celiac genes. He can't afford a biopsy - I'm urging him to just presume this is celiac disease (he's asymptomatic, but I'm not and I only have one celiac disease gene...)

[KaitiUSA]

I'm saying that you can't just rely on the biopsy...there are very accurate blood tests that also play a key role in diagnosis and you just had those done..some doctors use certain blood tests in place of biopsies while others require them to be done.

Basically, now if you have a biopsy that they say comes back negative you still most likely have celiac due to the way your blood results came back. You see if you have it in beginning stages you may have little damage or sporadic damage that they can easily miss. They only take a few samples so it's very easy to miss a diagnosis.

If you want to get a biopsy to see how much damage, that they can see, is done at this point then that's fine...but diagnosis doesn't lay with whether that comes back positive or not.

[Canadian Karen]

Okay, makes sense now - I either have brain fog right now or am suffering from lack of sleep (my collagenous colitis has it's own internal clock - wakes me up at 2:00 a.m., and constantly going to the can/having cramps until 5 or 6 a.m.). Those are my nights on a regular basis pretty much.......

The only reason I could think of that he would HAVE to have the biopsy (especially with those numbers!) would be insurance purposes? I am not sure how it goes in the U.S.........

Hugs.

Karen

[Random Guy]

thanks katie, i was really just kind of having a little fun with the oddness of it, but thanks for clarifying.

-rg

[Nantzie]

I think we've found our class clown!

I totally thought at first you were serious too RG and I was trying to figure out what exactly you were trying to ask.

Nancy

[VydorScope]

IMO, skip the biopsy, you have celiac disease. The biospy is just extra expense and risk and get you no additional information. Welcom to the elite celiac disease club

Thats just my opinion and I am not a doctor just some geek with a PC an t1 line

[VydorScope]

my current plan is to eat all the pizza i can now (i have no symptoms) while i still can (sorry if that's like waving a drink in front of an alcoholic, really, i am sorry), and call a GI.

HORRIBLE PLAN. Worst one I have seen on this board a a while. Your plan now should be to go gluten-free right way. You have postive blood work, the bispoy is pointless, and doing what you suggest could have serious negative medical impact.

IMO thats like saying "I know drinking battery acid is bad, but I will dirnk as much as I can till some one tells me to stop!"

Agian, as I mention above, I am not a doctor nor do I play on on the internet.

[nettiebeads]

I agree that the biopsy would probably be a waste of time and money. It can rule in celiac disease, but not rule it out - false negatives can happen. At one time biopsy was the golden rule, but not so much any more. But of course, if your curious as to if damage has been done and if so, how much, go for it. But the biopsies can miss the damaged area or be so slight that only a highly trained experience tech could accurately read the results. Your choice.

[floridanative]

To pick a GI, I'd ask how many cases of Celiac they see a year. My GI said he'd seen only a few in his career (he's 50+). When he talked about the biopsy, I knew he didn't know how to do one correctly, saying he'd take a biopsy IF he saw something. You can't see all damage, even with the scope. So now I'm with another practice that explained that they had to take several biopsies during the endoscopy in order to get an accurate result. Good luck!

[FaithInScienceToo]

Hi, Guy from Loooooong Island....

I will write my answer in 'parts:'

--------------------------------------------------------------------------------

PART I

Definitey gotta 'vote' for the biopsy isn't worth it UNLESS:

1) you NEED one for insurance, or to officially write-off costs of gluten-free foods (which typically amounts to very little in the USA, due to IRS rules).

2) your GI doc can convince you that there is a possibility that 'something else' might be wrong with you... that's how my doc got me to get both an endoscopy with biopsies, AND a colonoscopy with biopsies, even though he knew I was already 70 days post gluten-free at time of biopsies - I'm glad that I went through with it, though, since at age 47, it wasn't a bad decision to go ahead and get a full check.

3) you want to find out how much damage has been done (BUT, even that can vary from time-to-time in Celiacs).

[There may be add'l reasons...those are the ones I know of]

------------------------------------------------------------------------------------------

PART IA

"False negatives," in case you do not know yet, occur when there is current damage that should have been detected via biopsy, but one of the following 'went wrong:'

Not enough areas were bisopsied, if damage is not 'complete' [which is how the damage typical occurs - "in patches"]

Cuttings were not done at the proper angle (the doc doesn't know how to do it)

The person 'reading' the biopsy 'blew it'

[There may be more problems that can go wrong - these are the ones I am aware of.]

-----------------------------------------------------------------------------------------

PART II:

Summary of reasons I can think of to NOT get the biopsies done:

1) Your test results are "POSITIVE" already

2) You can go gluten-free ASAP

3) You will never have to tell your insurance company that you got diagnosed with 'a disease' and, in the USA, that may very well mean lower LTC insurance costs (long term care insurance), and possibly lower costs of independent insurance in case you ever need to buy that, etc...

4) You will save time and money by not having it done...

5) It's an invasive medical procedure and so has real risks involved.

Good luck with your decision. I know it's not an easy one -

Gina

[jajus100]

I would have the biopsy done. Jut for the fact that it is the "gold standard." It might also lead other family members to go ahead and be checked. It would also be good to know how much damage you have.

[julie5914]

I did not have biopsy. Your numbers are all high and all positive - you have it. I ate lots of gluten and felt like crap for a month after getting lab work higher than that while waiting for a GI appointment because I though he would want to do a biopsy. Waste of time. They took one look at the results and put me on the diet that day. I shouldn't have waited a month. Sounds like you don't have many symptoms, but you do have celiac, and there may be things you think are unrelated that will be better when you start the diet. Just decreasing the extremely higher chances of cancer that come with consuming gluten when you have celiac should be some good motivation.

The only reason to do biospy (IMO) would be out of curiosity to see how much damage is done, to get a definitive diagnosis if your GI is one of those gold standard types, to make sure nothing else is wrong if that is suspected, or to get a baseline in case you still have or develop symptoms on the diet and they need to check out what has or hasn't changed in there.

These are decent reasons, but knowing what I know now, I would have started the diet the day I got my lab results.

[elonwy]

My blood tests were very positive as well, but my doc demanded a biopsy. I hadn't found this place yet, so I went ahead with it. It was horrible and there was "no gross evidence of sprue" which means he couldn't tell.

The good part was, they foud some ulcers caused by my taking so much alleve for my pain for so long. So now I can't take alleve or advil.

He diagnosed me with celiac disease anyway, because I went gluten-free the day after the biopsy and felt better after about three days ( not 100% but alot better) and because my blood tests were so high.

I did SPLURGE on gluten up until the biospy though, cause there was a two week lapse, and although it made me horribly horribly sick for those two weeks, it really helped me pyschologically because I "said goodbye" to all my favorite gluten foods. Kinda like going on that last bender before going on the wagon, to continue with your alchoholic reference.

Welcome.

Elonwy

[jenvan]

Lots of good input here. Your blood work definitely looks like Celiac... I don't blame some peeps for opting out of the biopsy/endoscopy, but I wanted to go ahead and do the procedure...I didn't have to wait very long for it either. I have had 4 endoscopies and they all went fine. If you read and ask around you will see that the majority of people here had endoscopies that went very smoothly. The hardest part is usually not being able to eat for a day! It is really not a biggie. Once I had a slight sore throat for the day, but that was it. As I said, I understand why some do not choose to have a biopsy, and that choice can make sense based on your circumstances. One of the reasons I like the biopsy is because it is a great tool for measuring progress and healing. Blood work doesn't always correlate with whats going on in the intestines...so the biopsy gives you an initial point of reference and a helpful marker for the future. The information comes in handy especially if someone has trouble with intestinal healing...or something like refractory sprue. It is also handy in some practical ways like making you eligible for case studies etc...as we found recently.... Good luck making your decision

[Random Guy]

see, this is why i love open forums to discuss medical issues.

without this discussion, i wouldn't have thought about some of the things that you are all bringing up regarding the great shakesperian question:

to B(iopsy)e or not to B(iopsy)e

instead i just would've shook my head and said "uh, okay dr. whatever you say"

not that I won't do what a doctor suggests, but you've brought up questions to ask.

so thanks very much. very good to hear different perspectives.

I have an appointement with a GI on Wednesday, the day before thanksgiving. I hope that I'm not told to go gluten free at that appointment.

For if this is what I am told, i shall cry out, in as dramatic a way as you can imagine

"Oh , but please, great doctor, Please! One more day of Gluten is all I beg of this life"

thanks

-rg

[jajus100]

LOL

For what it is worth, IMO, waiting one or two days to go gluten free wouldn't be the end of the world for you... If he tells you to start on Thanksgiving, I think I would start the day after....

[FaithInScienceToo]

LOL...people sure do take you VERY seriously...

Enjoy your feast, and good luck at your doc appt -

'To be or not to be' - good one.....

[floridanative]

Sorry to tag on but I don't want to start a new post over this.

My results were just faxed over (Celaic panel) and the doctor didn't call, his nurse fill in just faxed them over and said it looks like everything is negative. I don't think she knows what she's looking at.

Antigliadin Abs, IgA - negative (no number given)

Antigliadin Abs, IgG - negative (no number given)

T-Transglutaminase (tTg) IgA - 7 *flagged as high, 4-10 being weak positive*other GI ran this test too and it was an 11 in Sept. So I'm not sure why it's gone down - anyone? Under this part there is some info regarding that this antibody is 99% specific for gluten sensitive enteropathy.

Reticulin IgA Ab - negative (no number given)

Reticulin IgG Ab - negative (no number given)

Immunoglobulin A, Serum - 197 (70-400 normal)

Help! I asked the doc to call back but I'm not sure he will do so today and I don't want to stress all weekend over this.

Thanks!