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Was I Properly Diagnosed?

maddycat

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maddycat Contributor
maddycat
Posted

I was "diagnosed" in August with Celiac Disease by a GI dr. They only did the Anti Gliadin (AGA) IgA and Anti Gliadin (AGA) IgG tests. Both came back very slightly elevated.

The ranges were:

0-25 normal

25.1-75 equvocal

75.1 + up high

My results were 27 and 31 respectively.

Now I'm starting to doubt that I was diagnosed properly. I keep reading that these two tests cannot tell you conclusively if it is Celiac. What else can cause them to come back slightly elevated? I know it is too late to get a biopsy done as I have been eating gluten free for over 6 months now. Should I try to get gentic testing done to see if I have the "Celiac genes"?

Do you think it might not be celiac but more an intollerance to gluten, possibly?

Any thoughts would be appreciated.

Thanks,

Marcia

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confused Community Regular
confused
Posted
I was "diagnosed" in August with Celiac Disease by a GI dr. They only did the Anti Gliadin (AGA) IgA and Anti Gliadin (AGA) IgG tests. Both came back very slightly elevated.

The ranges were:

0-25 normal

25.1-75 equvocal

75.1 + up high

My results were 27 and 31 respectively.

Now I'm starting to doubt that I was diagnosed properly. I keep reading that these two tests cannot tell you conclusively if it is Celiac. What else can cause them to come back slightly elevated? I know it is too late to get a biopsy done as I have been eating gluten free for over 6 months now. Should I try to get gentic testing done to see if I have the "Celiac genes"?

Do you think it might not be celiac but more an intollerance to gluten, possibly?

Any thoughts would be appreciated.

Thanks,

Marcia

I am not as smart as many in here, im just learning, but from what i have read and learned already, it sounds more like an wheat intolerence then celiac. I do know that u cant get results just from an high IgG, cause that is what my son has with the other parts being normal. I do know that ttg or Ema are the most accurate for celiac.

You could still do entrolab testing, even if u just want to test for the genes, that would help tell if its an intolereance or celiac (i think) someone else might know more about that to.

Do you fell better being gluten free?

I know many just stay gluten free and not need a diagnoses from a dr or a lab

paula

Rachel--24 Collaborator
Rachel--24
Posted
Do you think it might not be celiac but more an intollerance to gluten, possibly?

You could very well have Celiac Disease....because they didnt run the full panel with tTG and EMA you didnt get a full picture.

It is true that you may not have Celiac but it is also true that had they run all of the tests....you may have had positive tTG or EMA....which would clearly indicate Celiac.

If all the tests were run and the two which are very specific for Celiac were negative....there would be some room for questioning the diagnosis. The tests werent ordered so this is not the same as being negative...I would assume its Celiac unless proven otherwise.

Did you have symptoms that resolved on the diet?

How is your health now?

I would probably get gene tested if I were in your shoes. It still doesnt prove Celiac but it would definately be helpful to know whether it could or couldnt be. Unless you are willing to go back on gluten for several months and get re-tested this is really all you have to work with.

I would not test with Enterolab (for anything but genes)....you will not get a more clear picture with Enterolab. The test isnt going to tell you anything that you dont know already and it still cant tell you whether or not you have Celiac. You already have positive IgG and IgA in blood so you wont benefit from having the stool test done.

Resolution of symptoms is #1 in my opinion. If you've got good results from the diet and are feeling as if its made a difference...I would definately stick with it. Whether or not its Celiac Disease you did have these antibodies in your blood and if the diet is helping...this is the most important thing.

CarlaB Enthusiast
CarlaB
Posted
I would not test with Enterolab (for anything but genes)....you will not get a more clear picture with Enterolab. The test isnt going to tell you anything that you dont know already and it still cant tell you whether or not you have Celiac. You already have positive IgG and IgA in blood so you wont benefit from having the stool test done.

I agree. You already know you have at the very least a gluten intolerance (not just wheat) and Enterolab can't tell you any more than that.

I also agree that genetic testing would at least let you know whether you are predisposed to having celiac.

rez Apprentice
rez
Posted

I'm not saying that you don't have Celiac, but I am saying that you are 100% right that you were NOT properly diagnosed. I can't believe the ignorance in the medical community, and this was a GI specialist! That's crazy and I would be so angry. The two most specific tests to Celiac are the tTG and the EMA with the EMA having almost a 100% accuracy rate. The gold standard is the biopsy. A good GI doctor would definitely NEVER have diagnosed you with those results. The two tests you had come back positive are in no WAY, SHAPE, or FORM a diagnosis of Celiac. I would educate yourself w/ Dr. Peter Green's book about Celiac or go on a reliable website like Web MD. CRAZY!!! Stories like this outrage me! Good luck and I would personally take the info you learn back into the doctor. Celiac is a serious life long disease and if it's not Celiac, you deserve to know what it is. Good luck! Don't waste your money on Enterolab either. They won't diagnose you w/ Celiac. They can't and they don't claim to. They could diagnose a gluten intolerance, but if you feel better on the diet, and who wouldn't, you've already figured that one out. :):) Good luck again!

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