My Test Result Units Are Different From What I'm Reading Elsewhere...

[LaurelMarie]

Hi,

I'm new here. Been lurking for awhile trying to figure it all out, and I finally got tested and got my test results. Unfortunately, between the time my doctor ordered the test and the 6 week gluten challenge (I had already been happily eating gluten-free for 6 mths because I had discovered it made me feel better), she went on maternity leave. So now I am stuck. I will have to see if I can't get a different doctor for the next step I guess, but thought I'd see if I couldn't get some help here in the meanwhile.

I had the tissue transgutaminase IGA and IGG tests. Here are the results, no useful units provided:

IGG My result: 0.72 The Standard: <0.90- Index

IGA My result: 1.34 The Standard: <0.90- Index

What do you think?

Thanks!

Laurel Marie

[tarnalberry]

you don't need the units because they give you the reference ranges, which vary from lab to lab anyway. your IgG test was negative but the IgA test was positive. so... especially on only those two tests alone, "inconclusive". (you could well have it, but it's hard to tell from conflicting test results.) it's either further diagnostic testing, or trying the gluten free diet. (you were eating gluten for your tests, right?)

[nora-n]

No, the results were not inconclusive, since the most important one is Ttg IgA.

Usually here in europe they do the

-total IgA test and the

-Tgt IgA test and only if the total IgA is low, they bother to run the

-Ttg IgG.

So your test definitely is positive.

I hoe to have cleared the confusion.

It would even have been positive with only the Ttg IgG positive.

Now continue to eat gluten, and get the endoscopy done, and be sure they take at least 12 samples from various places. It is so common to have patchy villous damage so it could be anywhere. Somepne posted here that they first found the damage witha capsule endoscopy, and it was in the other end of the small intestine. Norally it is also in the beginning. The endoscopy does not reach that far.

nora

[tarnalberry]

Most medical doctors are going to call one test that says you have something and one test that says you don't have it as "inconclusive" when you combine the two. And, if the tests could be trusted to be all accurate, it would be. It's an "unclear" position from a medical standpoint. I would probably say "eliminate gluten, see how you feel, because you probably have a problem with gluten", but realize that the doctor's are looking for something more definitive.

[LaurelMarie]

I had drastically cut down on eating gluten for about 4 months (I'm a beginner so I'm sure there were some slip ups in there). Then went to the doctor and she told me I'd have to eat gluten again for 6 weeks, so I did that. I read, and now I can't remember where (but I'm looking and I'll provide the URL if I find it again), that the IgG responds much more slowly than the IgA and so, if you had not eaten gluten for awhile, then the 6 wks of gluten challenge would not be enough to bring the IgG up to positive, BUT the IgA responds quickly and the 6 wks would be enough to get a positive result on that. Which made sense to me with my test results.

What confused me was that some tests seem to have results that are in ranges... negative, mild positive, or strongly positive... see this article, for example: https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

Since the ranges discussed in that article are "The sample can then be classified as negative, (0-20 units); weak positive, (21-30 units); or moderate to strong positive if greater than 30 units." and my test results are giving the standard as <0.90 with my positive result as 1.34... I wasn't sure what that meant... weak positive, strong positive?

Another question... why is it important to get the endoscopy (which sounds very unpleasant, does it hurt?) I already know I feel better without gluten, and if I'm positive for IgA... why would I need the endoscopy too? (sorry, i bet that's a really common question here)

Thanks for your time!

Laurel Marie

[nora-n]

Yes, the IgG test is not run as a routine many places for some reasons, like you mention.

Makes sense that the IgG moves slower.

There are many postings on the net about why the IgG stays elevated for more than a year after going gluten-free .... parents are feeling guilty and scratching their heads wondereing if they are not doing a good enough job in keeping their celiac kid gluten-free.

You ask why I say you need the endoscopy?

Well, there are some articles about that here at celiac.com, and the main reason they say is to check you up and rule out other things.

There is a real risk of malignant lymphomas in celiacs.

Other things can be ruled out, too.

(personally, I think capsule endoscopy would be better for all of this, since it covers all of your intestinal tract, but doctors tend to do like they always have done...)

The other reason is that in other countries, like in Europe and Canada where there is universal health care, it is better to have an official diagnosis.

Here where I live, they get about 250 dollars a month if officially diagnosed.

Now they have to have the same rules over in the U.S. as Europe.

nora

[LaurelMarie]

Ah, that makes sense. One would want an official diagnosis in that case. Here, in the US, I"m not sure what the benefit would be. I recently had a colonoscopy up into the small intestine, which was clear. I'm thinking that I could do the DNA test and see if that corresponds with the transglutiminase tests I've already had. For my purposes, that might be good enough.... until some time when there is an insurance need, or some reason to be "officially" recognized.

What do others in the USA feel about this? Have you found a strong practical reason to have the endoscopy?

Thanks again,

Laurel Marie

[LaurelMarie]

I got to talk to the doctor today. He was really pretty good. Didn't get hung up about the IGG at all. Just looked at the IgA, said it's definitely positive. Kind of on the low positive side, but said that's probably because I had given up gluten for 5 months before, and then did a 6 wk challenge. The 6 wks might not be long enough for it to get really high.

He discouraged the biopsy, saying the blood test was not 100% so they don't call it a "diagnosis" but it's so close 95 - 99% (which made me laugh... they can't call that a diagnosis?) there was really no reason to do a biopsy. He said (and I guess this is the US philosophy) that they really only do the biopsy for people who have such a hard time with the idea of giving up gluten that they really have to be 100% sure before they will do it. He couldn't think of any practical reason in my case, why I should have a biopsy, given that there are risks associated with it.

So now I'm happily gluten-free again, and informing my family. Found some really good gluten-free cinnamon doughnuts at Whole Foods!

Laurel Marie