My Test Results-did They Miss One?

[Gaye of PA]

I've had a difficult time with our local hospital blood lab (after reading things here, I wish I had sent it off to one of the good labs listed here) and wanting to know if everything has been covered now:

I asked to be tested for AGA (both IgA and IgG), EMA (IgA), tTG (IgA), and Total IgA level. After the blood tests came back, the doctor told me I was negative. I asked to see the paperwork, and saw that only 2 of the tests had been done! So after much calling and tracking down, the lab admitted they had goofed and not done all the tests. I went back in, had more blood taken, and now these results are "positive." Here's what I have:

Transglutam IGA-negative

Reticulum IGA--negative

Gliadin AB (IGG in range, IGA--positive)

IGA serum--positive

I thought they were supposed to do endomysial too (or is the transglutam taking its place)? I know that I specifically asked for the EMA.

My question is, Is this enough, or should I raise a stink and get blood taken again?? My doctor is going to retire soon, and I worry about going to a new doctor who tells me that what I've got on paper isn't good enough.

Any help you can give would be so appreciated!

Gaye

[happygirl]

Your total serum IgA shouldn't be "positive" or "negative" ..... if its very low, it indicates you are IgA deficient, which will affect testing on the rest of the bloodwork.

It actuallly sounds like it might be good to start with a new doctor who knows what tests to run and knows how to interpret them?

Which Anti Gliadin (AGA) test was postive----both IgG and IgA or just one?

tTG and EMA are not interchangable. They are both pretty specific/sensitive, but they aren't interchangable.

[loraleena]

I need help with this too. My son just got tested. I thought there should be 5 tests. When I got the results only 2 were done. The endomysial was negative and one of the IGA was done and it was 6.5. Supposed to be under 20. What are the tests needed and what ones are the most telling?? These docs and labs are clueless!! I hate to stick my poor son again!

[Gaye of PA]

The total IGA serum was 418, with a reference range of 59 to 366.

The gliadin AB (IGG) was "in range" (<20 ) with 3

The gliadin AB (IGA) was "out of range" (<20 ) with 31 H

Thanks for any help!

Gaye

[happygirl]

Gaye, I'd go back and have your tTG IgA and EMA IgA done. Make sure that your doctor writes the correct prescription for the bloodwork, and then make sure the lab has a clue

Good luck!

(This is not an uncommon experience. Even the the tTG and EMA are the "best" tests, they are 'newer' ... i.e., not 50 years old!, and many doctors don't keep up on the right testing. My original doctor only ran the AGA IgA and AGA IgG, way before I knew a darn thing about gluten)

[happygirl]

I need help with this too. My son just got tested. I thought there should be 5 tests. When I got the results only 2 were done. The endomysial was negative and one of the IGA was done and it was 6.5. Supposed to be under 20. What are the tests needed and what ones are the most telling?? These docs and labs are clueless!! I hate to stick my poor son again!

The EMA is a good one, but if he didn't have the total serum IgA run, you won't know if it could be an false negative. If you don't make enough Iga, you can't test positive via all the other IgA tests. So, someone who is IgA deficient could be a raging Celiac, but they won't test positive on IgA tests. (In that case, they often run the tTG IgG). IgA deficiency occurs more often in Celiacs than in non-Celiacs.

Open Original Shared Link this is a good link from Dr. Peter Green, one of the top Celiac doctors. It explains the testing and may be a good resource for you to bring to your doctor and discuss.

[Gaye of PA]

Gaye, I'd go back and have your tTG IgA and EMA IgA done. Make sure that your doctor writes the correct prescription for the bloodwork, and then make sure the lab has a clue

Are you telling me to have these done because I may not be celiac after all? Or because I need more proof?

I've spent the last few days freaking out because I was diagnosed celiac, and now am freaking out thinking I might not be!

[happygirl]

There are various opinions on this....I can't answer that. I would be concerned that your doctor isn't up to date on Celiac, though, since he didn't run the "best" tests, nor did he suggest a biopsy.

If you were tTG or EMA positive, I'd say that you probably are a Celiac.

The AGA IgA and IgG are not the most specific/sensitive tests. They may also indicate a gluten intolerance that is not Celiac. Same treatment though-the gluten free diet.

I, personally, would want the right testing done to start with. Even though the testing isn't always 100% perfect, I would still want the best shot at making an informed decision. If you went to a doctor who was experienced with Celiac, they would *probably* not diagnose you with Celiac after only running those two tests. Its better to get any testing done NOW before you are gluten free.

from: Open Original Shared Link

Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well"

Also, please keep in mind, that regardless of the test results, I would highly encourage ANYONE with symptoms to do a gluten free trial for a month or two. You don't need a diagnosis to go gluten free if it stops your symptoms.

These are just my personal opinions. At the very least, I would encourage a phone call to your doctor.

[happygirl]

Here is some good info: Open Original Shared Link

How is celiac disease diagnosed?

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn