Testing/ Son Is Going In For Biopsy & Blood Testing

[skurtz]

Never thought to ask Dr but when they do blood testing do they check for allergies to foods, or is it strictly for celiac? Also I was kind of suprised to learn , when they do the biopsy its down the throat? I thought they did by a colonoscopy. any info would be great!!!!!!!!

[Guest nini]

regarding your first question, celiac testing and allergy testing are two entirely different things. make sure they are doing a complete Celiac Panel of tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

when they do the biopsy make sure they take at least 6 to 8 samples. If they do not they are more likely to miss any damage.

[Rachel--24]

They do an endoscopy to diagnose Celiac...so yes, its the one thats down the throat.

[skurtz]

rachel maybe you know the answer to this: so if a colonoscopy is performed can they find out that way also?

[Guest nini]

rachel maybe you know the answer to this: so if a colonoscopy is performed can they find out that way also?

not from a colonoscopy as far as I know...

the Dr. that spoke at our Celiac Support group meeting this past weekend said that the damage starts in the Upper part of the intestines which is why the endoscopy down the throat.

[skurtz]

RACHEL:thank you very much for the quick response. My son is 11 & has aspergers ( high functioning autism)

He's been having stomaches since sep we thought it was anexity from school. we did the gluten free det for the 1st 2 weeks of jan. we both felt GREAT!!!!!! & then he got amothing by accident & he broke out with tiny blisters on his face, and stomach pains & d. I told the ped gastro today even if he comes back neg hes going right back on it It made a HUGE difference in mood everything rash gone.... I also went off diet and I feel like crap!!!! wainting to see the outcome with son before i go. So I have till the 20th fill him up with gluten little hard because now he doesnt want anything cause he knows he will feel like crap & the rash is down right ugly its on his face. thanks again

[Guest nini]

sorry, I kinda jumped in on Rachel, (I'm not Rachel btw )

because he's already been gluten-free the likelyhood that damage will be mostly healed and you will have a false negative. also because of the autism and aspergers, he should be gluten free anyway. so knowing that, I wouldn't bother going through with any further testing. Just go ahead and get him healthy by keeping him gluten free. Just my personal opinion.

[skurtz]

thanks for the input I think we are still going to go ahead he was only gluten free for 2 weeks the 1st 2 in jan

hes been eating whatever since. I do appreciate the info. Do you happen to know anything about dermititis herpetiformis? Is it caused by an allergy?

[Rachel--24]

sorry, I kinda jumped in on Rachel, (I'm not Rachel btw )

LOL....No, you're *not* Rachel....you're Cornholio!!

Stop stealing my answers Cornholio!

thanks for the input I think we are still going to go ahead he was only gluten free for 2 weeks the 1st 2 in jan

hes been eating whatever since. I do appreciate the info. Do you happen to know anything about dermititis herpetiformis? Is it caused by an allergy?

DH is a skin condition associated ONLY with Celiac Disease. If your son has DH then he would most definately need to remain gluten-free 100% as its the only cure for DH.

[Guest nini]

LOL....No, you're *not* Rachel....you're Cornholio!!

Stop stealing my answers Cornholio!

oh ok... I'm sorry! pffffffft!!!!

[skurtz]

They do an endoscopy to diagnose Celiac...so yes, its the one thats down the throat.

rachel you said if I had any questions you could probably help me.The test my son is going to have are:

blood- BCB DIFF ESR AMYLASE LIPASE CMP TSH ATT

ALSO AN EGD

IS HE GOING TO GET EVERYTHING HE NEEDS???

SKURTZ/ (STEPHANIE)

THANK YOU SO VERY MUCH

[happygirl]

I'm not sure what all those letters mean!

I personally would call your dr/nurse and ask what tests they are running (in layman's terms). Tell her you specifically want to make sure the FULL Celiac panel is run. I would even tell her specifically what you want (the tests that nisla listed for you). Unfortunately, dr's don't always fully "get" Celiac....it is best to be as pro-active as you can! You should also tell her that you are requesting mulitple biopsy sites---many dr's do not practice that.

Good luck!

[Guest nini]

rachel you said if I had any questions you could probably help me.The test my son is going to have are:

blood- BCB DIFF ESR AMYLASE LIPASE CMP TSH ATT

ALSO AN EGD

IS HE GOING TO GET EVERYTHING HE NEEDS???

SKURTZ/ (STEPHANIE)

THANK YOU SO VERY MUCH

again, not Rachel here, BUT... these tests AS FAR AS I'M AWARE have NOTHING to do with Celiac. So either they are looking for something else with these tests, OR the Dr. has NO IDEA about Celiac. Please request that they do the tests that I posted earlier in this thread... Very important.

[Rachel--24]

As Nini already stated.....those tests have nothing to do with Celiac. The TSH is a thyroid test and the others are for various other things but nothing related to Celiac.

The Celiac bloodtests were already posted by Nini in the second post of this thread....those are the tests the doctor needs to order. If your son is having an endoscopy/biopsy looking for Celiac then the GI needs to take several samples (not just a couple) from the intestines. Usually bloodtests are done first and then the biopsy if necessary.

[jerseyangel]

An EGD is an endoscopy with a biopsy. So that test would be for Celiac.

[Guest nini]

An EGD is an endoscopy with a biopsy. So that test would be for Celiac.

I meant that those blood tests have nothing to do with Celiac. The specific Celiac panel is already listed at the top of this thread.

When he has the endoscopy, they Celiac Specialist Dr. that spoke at our Support Group Meeting on Sat. said that they will need to do AT LEAST six to eight samples for biopsy. Because he's already been "low gluten" be prepared that there may not be much if any damage... but as I said before, with autism and aspergers, he would need to be gluten free regardless of if he tests positive for Celiac or not.

[skurtz]

Thank you everyone for the quick response, The Dr. came highly recommended He's one of the best gastro peds out there, he's out of Pittsburgh PA. I am going to call his office on Mon. One of the mothers that recommended him, told me thats how he handles it when looking for celiac if he suspects that is the cause.

Bloodwork & EDG.Thats what he did for her son. I talked to the nurse at my Drs she said it all sounded like standard blood work except for the ATT & the RES? Anyway just to make sure I ll double check on monday.

She also told me that if the intestines are inflamed or irritated & its not celiac it could be irritated by a parasite or a food allergy. Very interesting. Thanks again. Oh ya 1 more thing if you have a wheat allergy

& you dont take care of it canit somewhere down the road turn into celiac?

skurtz (stephanie)

[skurtz]

According to the nurse at my drs (she just emailed me) The current GOLD standard for diag suspected celiac in children is performing a EGD, because children are more likely to give a false negatvie blood test beacause their bodies have not had suffcient time to amke the antibodies being tested. & the blood test that are be performed are to make sure nothing elses is going on.

[Guest nini]

According to the nurse at my drs (she just emailed me) The current GOLD standard for diag suspected celiac in children is performing a EGD, because children are more likely to give a false negatvie blood test beacause their bodies have not had suffcient time to amke the antibodies being tested. & the blood test that are be performed are to make sure nothing elses is going on.

Just FYI The current thinking by the "experts" is that within 6 months or so the biopsy will NO LONGER be accepted as the gold standard. The specific blood panel that has been mentioned all over this sight is becoming accepted as more accurate, especially since more labs are becoming familiar with how to read it.

Children are also less likely to have damage in the intestines show up too because they are young enough that in some cases the body is reacting but damage hasn't occured on a measurable level yet.

[skurtz]

To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

[Rachel--24]

To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

I think many of use here have learned the hard way that the "specialists" really don't know all that they should regarding Celiac. Of course you should do what you feel feel best for your child but my advice is to do your own research and be aware that your son could have a negative biopsy and still have Celiac. Also as far as the bloodwork....those tests are unrelated to Celiac. You should look them up and then look up what the appropriate tests are for diagnosing Celiac. You will find that they are not the same. If these are the only bloodtests the doctor is running then I would be very concerned about his knowledge of Celiac.

Good luck to you.

Also, it is true what Nini wrote regarding the biopsy. Celiac specialists are coming to realize that the biopsy is a bit outdated and will no longer be considered the "gold standard" due to more accurate ways of testing. Biopsies often give false negatives so they basically can only rule Celiac in but can never completely rule it out.

[Guest nini]

To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

I'm done here, you obviously don't want my help, you've pretty much ignored all my posts and now this.

[ianm]

Skurtz you are going to find that the majority of doctors out there know little or nothing at all about celiac. I went to dozens of doctors and not one of them ever mentioned celiac or even entertained the thought of a dietary problem. All those so called professionals wanted to do was write me a prescription or twenty. You will find that the majority of people here are far more knowledgable than most doctors are.

[skurtz]

ALOT of you people are very negative !!!!!!!!!!!!!!!!!!

There are some DRS & some Specialist That are very good at what they do & very knowledgeable, they maybe far & few between But there are some really good ones!!!!!!!!!!! Maybe you just havent taken the time to be more persistant, it sounds like nini you would just rather be scarcastic & be right. Sorry my children are very important to me & I dont settle for mediocure. & if I did my son would have been labled ADD & he would have been placed on ritalin. So I think I m gonna have to go with the Specialist From Pittsburgh PA.

[Rachel--24]

I'm sorry but it seems to me that you are *asking* us for opinions and advice and then when its offered to you...you want to either disprove it or insult the person who offered the advice. I for one, will no longer respond to your questions. You spefically asked if the tests the doctor is ordering are sufficient for your son. I, and the other posters all have responded that "No....these bloodtests are not correct if you're looking for Celiac. If you are not happy with the responses then I would suggest not asking for advice.

Frankly, I'm not sure what it is that you're looking for here.

It is a well known fact that the biopsy misses lots of Celiacs due to false negatives. Just ask how many people here have Celiac Disease but had negative biopsy. The best advice I can give you is to learn all you can but if you're only here to "attack" those responding to your questions that is not the purpose of this message board.