Getting Tested
 

My dd called her regular doctor to set up testing and the secretary told her she had never heard of Celiac and didn't know what the testing was! I told dd to ask for these tests:

antigliadin IgA, IgG
anti-tTG
anti-endomysial
anti-reticulin
total IgA

Will the doctor even know what she is talking about? What else should she say? My dd is a young adult and lives over 1000 miles from me so I can't go with her :-( Cyn

If they write that on the lab instructions, the lab doing the blood draw should know what to do. If at all possible, get the sample sent to Prometheus or Mayo for testing.

With that being said, some labs have eliminated the Antigliadin IgG and IgA. I don't know if this has happened in the US but it has happened in New Zealand
Anne

Cross your fingers.

Often, the doctor will recommend a GI specialist because they do feel uncomfortable ordering tests outside of their speciality when they aren't familiar with medical condition they are testing for, and they aren't familiar with the appropriate tests. That, and I think there is some sort of professional courtesy involved with referring to an appopriate specialist. This is where you sometimes need to be ready to ask really nicely (beg), and explain the "rush" on the situation for accurate results if she's already stopped eating gluten, etc.

I know that I asked our pediatrician to run the entire panel, as you stated it above. He ended up checking with the local children's hospital in the closes big city, and they told him the only tests required were the anti-tTG and total IgA. He called me personally to say the tests were all normal. It wasn't until six months later when I requested copies of all of her past labwork that I learned only two of the tests had been run. I had to go back and ask for the antigliadin antibodies (she was still eating gluten because all the tests were 'normal'). They tried to say the important tests had been run, and I had to convince them why the antigliadin antibody tests were important to me. (It was the only clue we had for my youngest child, and she had already responded remarkably to a gluten free diet).

The doctor may very well not know what she is talking about because not all doctors are familiar with celiac disease. It has really only been increasing in recognition for about 5 years, and many of the antibody tests are less than ten years old.

If the doctor wants to test using only the anti-tTG and Total IgA (based on newer recommendations) your daughter may have to be prepared to explain she would also like the test for antigliadin antibodies because she is interested in any degree of gluten sensitivity.

She could take along a copy of this article, as it has a flowchart that includes the antigliadin antibodies, at least:
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)


Have her ask for the celiac panel through Prometheus Labs, listed in my post below!

I know this is probably totally confusing... sorry about that.

Cara

Last time I checked I think Prometheus still included the antigliadin antibodies in their "celiac panel".

This is what we are working against :( . Recommendations that call only for a anti-tTG ...out of one of the major celiac centers.
http://www.celiacdisease.net/Portals...Testing-SG.pdf

Mayo, too :(
http://www.mayoreferenceservices.org...sease-1105.pdf

I'll post back when I find the current Prometheus Lab celiac panel... hope it hasn't changed.

Here it is...I'd settle for the 5-marker panel from Prometheus Labs~ March 06

http://www.prometheuslabs.com/pi/Pro...t_March_06.pdf


Have her take a copy of this Prometheus Labs product sheet, too.

Cara

Looks like Prometheus does everything but the reticulum antibodies.

http://www.prometheuslabs.com/pi/Tes...ruary_2006.pdf
Anne

Cara remains her title to the fastest keybordist. She beat me to this info.

Anne, did you see I found the update algorithim from Mayo (edited it into my post above)? I don't see antigliadin antibodies. Disappointing :(. Sometimes I feel the great divide is closing in, and other times I feel like it is only widening.

Cara

Although Dr. Nelsen wrote the article you mentioned, Gluten Sensitive Enteropathy (Celiac Disease):More Common Than You Think, he only tested tTG IgA and tTG IgG when my Enterolab results came back so high. :confused: Of course they were negative. I was only getting slight contamination with birdseed - at least I hope that was all the gluten exposure.
Anne

They are giving 2 different sets of info. I see that your PDF was updated 3/06. Granted...your link are for screening tests and my link is for followup testing. I don't know what the difference is. If gluten is in your system - you can tell it.


http://www.celiacdisease.net/CeliacD...5/Default.aspx

Yuh!...... seems a little like they are talking out both sides to say the antigliadin antibodies are important for monitoring gluten free diet compliance, doesn't it???

It is because the anti-tTG is specific to the villi damage, but isn't a good indicator of dietary compliance.

Positive antigliadin antibodies DO INDICATE someone is having an immunological response to gluten. They just aren't as strong of a predictor of villi damage/celiac disease.

How can they say they are meaningless in one breath, and in the next breath use the tests for follow up because they are the best measure of dietary compliance?

But it is what it is. Statistically, anti-tTG is the best test in terms of correlation with villi damage. The antigliadin antibodies are the best test for measuring dietary compliance. What is missing? common sense

This makes me nuts :rolleyes: :( :mad: .

Cara

I kinda lied...I guess I do understand WHY it's not really used for DX'ing. But geeez if it's good enough to test for dietary compliance, why not include it in the entire panel. I know the answer to that one too...$$$$$$ :) :p

Yup - makes ya crazy!!

...seems a little like they are talking out both sides
LOL!!! That was my thought too...