Interpretation Of Test Results

[rimsch]

Hello,

 

I got the results of my blood tests but I'm not quite sure how to interpret them. I hope you are able to make use of the german expressions (hope they are similar to the english ones) since I don't want to translate them because I don't know enough about celiac testing to this in an appropriate way.

 

 

 celiac-antibodies                                                              Ergebnis ( = result)                        Normalbereich ( =normal range)

                                                                                                                               

Gliadin (GAF – 3X) – IgG: Eliss                                           < 2.0     U/ml                                       < 25.0

                                                                                                

                                                

Gliadin (GAF – 3X) – IgA: Elisa                                             + 57.2   U/ml                                     < 25.0

                                                    

 

Endomysium – IgA - Ak (IFT)                                               < 1 : 10   Titer                                    < 1 : 10

                                                     

 

Transglutaminase – IgA – Ak (Elisa                                      < 1.0     Ratio                                     < 1.0

 

 

Transglutaminase – IgA – Ak (Elisa)                                     < 2.0     E/ml                                      < 20

 

 

 

 

According to the lab which conducted the tests the test which was positive (Gliadin GAF - 3X -IgA:Elisa) has a specifity of 95% and a sensitivity of 85%. So it seems to be pretty precise but on the other hand the other tests were all negative...For the translation: From what I've read the "Gliadin GAF-3X-IgA Elisa2-test seems to be pretty similar to the dgp-test.

 

Edit: Found a link where the specifity of the anti gliadin "GAF-3X: Elisa"-test is described. Open Original Shared Link (just in case this test more popular in germany than elsewhere)

 

One aspect that may be important concerning my test results is that I was on a gluten-free diet for 3 weeks, then ate gluten again for 3 weeks - and then I took the blood test. I think this could be important because I read on this forum for several times things like the dgp-test "is on of the fastest to turn positive if gluten is sneaking into your diet" (nvsmom)

 

Oh, and I think it was also nvsmom - thanks again for all your answers - who told me that I should remember that a "positive is a positive". Does this mean I should consider myself a celiac now since I have a "positive"?

 

So, all in all: How reliable is the dgp-test and what do you think specifically of my test results?

 

Thanks in advance!

[rimsch]

Sorry, for posting again but is there really no one who can tell me something about my test results?

 

It would be very nice cause I'm just not sure about how to interpret these results.

[nvsmom]

If that was a Canadian or American test, I would guess that the Gliadin IgA was the anti-gliadin antibodies or AGA IgA test. If so, some doctors think that it could indicate non-celiac gluten sensitivity (NCGS) or celiac disease. I'm afraid that I do not know of any other causes of a positive AGA IgA besides some sort of gluten (gliadin) sensitivity.

 

If the Gliadin IgA test was indeed the deaminayed gliadin peptides (DGP IgA) test, then I agree that it is very specific to celiac disease and you most likely have celiac disease. I think it's something like 5% of positive DGP IgA tests may be caused by something other than celiac disease.

 

This report, on page 12 has a chart showing the approximate test accuracy (of the old AGA and the DGP) : Open Original Shared Link

 

I honestly couldn't say which test they used on you.  It could be the DGP... it sounds like it could be but the labeling of the test is not something I have seen.  I think you should contact the lab to get some better answers. On the bright side, either way, your positive is probably caused by a gluten sensitivity, and you know how to treat that problem, right?  

[rimsch]

Thanks for your answer!

 

The link I posted ( Open Original Shared Link ) says:

 

" Recently, areas of gliadin could be identified against which only patients with coeliac disease and not healthy individuals develop antibodies. These areas were fused by means of biomolecular methods (Institute of experimental Immunology, Luebeck, Germany) and as recombinant "gliadin-analogous fusion peptides" (GAF) form the basis of the innovative Anti-Gliadin(GAF-3X) ELISA.

[...] The investigation of antibodies with conventional anti-gliadin test systems is no longer considered to be state of the art. "

 

And the "Deutsche Zöliakiegesellschaft" (german celiac association) says that the GAF-test and the DGP-test would be comparable. (And, as I said, the lab says in the short evaluation of the test that is has a specifity of 95%")

 

 

 

 I think it's something like 5% of positive DGP IgA tests may be caused by something other than celiac disease.

 

That would be interesting for me! Is there something like a list on which possible other diseases are named that could cause a positive dgp IgA test? Because for example Open Original Shared Link in this study it seems as if they used three groups of test persons to evaluate the specifity/sensitivity of the GAF-test: celiacs, non-celiacs and patients with rheumatic diseases. So my thought is: If false positive GAF/dgp tests are mostly caused by rheumatic diseases then I could be pretty sure about not having a false positive result.

 

Do you know diseases other than rheumatic ones that can cause false positive dgp-tests? Or, as I already asked, is there a list with the diseases that normally cause false positive dgp-test?

 

Thanks in advance!

[nvsmom]

I have not found anything on what could cause a false positive in the DGP IgA test, and I've looked.  I find reportings of false positives that disappeared but more often than not, I found that the false positives (called false because no villi damage was found during the endoscopy) were suspected to be caused by early celiac disease or a mistake during the biopsy.... Both of those "false" positives would be caused by celiac disease though.

 

I don't know anything about rheumatic diseases causing false positives in the DGP tests. I don't think a rheumatic disease would cause your body to react to gliadin; if that was the case, you would think everyone with rheumatic diseases would be treated like a celiac with a strict gluten-free diet.... That study was not very clear to me on that - to me it sounded like they just happened to be using rheumatic patients in their testing (aling with non-rheumatic non celiacs, and celiacs).

 

I'll keep my eye open for other causes of positive DGP tests, but I don't think there are many if any beyond celiac disease. Sorry I can't help more.

 

Hopefully someone else can offer you more information on that.  

[rimsch]

Thanks for your effort, I really appreciate that!

 

And for everyone else who knows more about these things (especially if other diseases can cause false positive dgp-tests; and if there are such diseases it logically would be interesting to know which diseases we are talking about) , feel free to post. 

 

I would be very thankful!

[rimsch]

Hello,

 

it's probably the best to just dig this up.

Check out post#1 for my initial test results.

 

So, atfer being gluten-free for about 9 months now (my doctor suggested 6-12 months to wait since my symptoms are probably only influenced slowly by gluten, if at all) I have done another blood-test.

 

The results are basically as displayed in the test shown in post#1. However, Gliadin IgA with the GAF - 3x test changed into the normal specturm even though it still remains at the limit. (23,1) What do I make of these results?

 

My symptoms havent changed really so far. However, even if the symptoms aren't related to celiac I'd still like to know if I'm potentially in "danger" of doing something unhealthy for my body when eating gluten.

 

 celiac-antibodies                                                              Ergebnis ( = result)                        Normalbereich ( =normal range)

                                                                                                                               

Gliadin (GAF – 3X) – IgG: Eliss                                           < 2.0     U/ml                                       < 25.0

                                                                                                

                                                

Gliadin (GAF – 3X) – IgA: Elisa                                             + 23.1   U/ml                                     < 25.0

                                                    

 

Endomysium – IgA - Ak (IFT)                                               < 1 : 10   Titer                                    < 1 : 10

                                                     

 

Transglutaminase – IgA – Ak (Elisa                                      < 1.0     Ratio                                     < 1.0

 

 

Transglutaminase – IgA – Ak (Elisa)                                     < 2.0     E/ml                                      < 20

 

 

Thanks in advance for your efforts!

 

Best regards,

 

rimsch

[cyclinglady]

Congratulations! Your antibodies are going down (I am sure you have figured that out). I am sure you would like to see them a bit lower, but based on the lab range you seem to be complying with the gluten-free diet. What does your doctor say?

For some people it can take a long time to reduce antibodies even while being on a strictly gluten-free diet. It can take 1 to 3 years for symptoms to resolve.

For others it can mean that you are still getting gluten exposure from your meds, foods or cross contamination issues. We just had a member, GreenBeanie who's daughter was struggling with elevated antibody levels after being on a gluten-free diet for a year or so. She found that even the amounts in Certified gluten-free processed foods (breads and cookies) were adding up and causing a constant flare-up. Perhaps, considering eliminating even processed foods for a while.

If you have celiac disease (and it appears that you do), you can NEVER eat gluten. It sounds like you have been eating gluten or are thinking about it! Please do not!

Take care!

[rimsch]

Thanks for your answer!

 

Congratulations! Your antibodies are going down (I am sure you have figured that out). I am sure you would like to see them a bit lower, but based on the lab range you seem to be complying with the gluten-free diet. What does your doctor say?

My doctor agrees that my situation is not easy to evaluate. She suggested either making a gluten-challenge once again to see if the IgA-antibodies go up again or conducting a gene-test. According to her a negative gene-test would mean that it is "extremely unlikely", nearly impossible that I have celiac.

 

If you have celiac disease (and it appears that you do), you can NEVER eat gluten.

1. Out of 5! different blood tests there is ONE which indicates that I have a problem with gluten.

2. I didn't write that here but my biopsy was also negative (4 samples). (Before I did the biopsy battened myself with pizza, burgers etc. for weeks since I figured it could be the last time in my life )

3. My symptoms haven't really changed since I started the diet. The idea was that maybe my seborrhea which causes a blepharitis could be triggered by gluten. However, even though my acne tendentially improved (obivously there is a connection between seborrhea and acne) my blepharitis is still the same basically.

All in all: Yes, there still is the possibility that I indeed have celiac. Still, if one considers the facts I'd say the probability that I have celiac is <50%.

 

For some people it can take a long time to reduce antibodies even while being on a strictly gluten-free diet. It can take 1 to 3 years for symptoms to resolve.

I'd like to get other opinions on that. Many doctors seem to suggest test-diets for periods like 2-3 months. I am aware that this can be too short.

However, even the DZG - "german celiac association" - suggests 6-12 months. I've never heard of 1-3 years. That seems rather long.

 

For others it can mean that you are still getting gluten exposure from your meds, foods or cross contamination issues. We just had a member, GreenBeanie who's daughter was struggling with elevated antibody levels after being on a gluten-free diet for a year or so. She found that even the amounts in Certified gluten-free processed foods (breads and cookies) were adding up and causing a constant flare-up. Perhaps, considering eliminating even processed foods for a while.

I don't think this is a problem in my case. I've been very strict and careful about not eating any gluten.

Also, the only thing I can think of that even has something made out of gluten-sources in it is alcohol - gluten-free beer as well as Vodka etc. Now, I really don't drink often so...

Last but not least:

I won't do anything rash. I haven't eaten any gluten so far and I won't be doing that for at least the next 3-4 months (to make the 12 gluten-free months as suggested by my doctor).

[nvsmom]

I'd like to get other opinions on that. Many doctors seem to suggest test-diets for periods like 2-3 months. I am aware that this can be too short.

However, even the DZG - "german celiac association" - suggests 6-12 months. I've never heard of 1-3 years. That seems rather long.

 

 

The test diet period is usually to judge symptoms and how they have changed on a diet. For the gluten free diet, one usually needs 6 to 12 months to judge the effect it is having on symptoms because so many symptoms will not improve in that first half year, often arthritis, neuropathies, ataxia, comprehension and mood issues.

 

The 1-3 years is how long it can take for some symptoms to resolve in some celiacs.  Many of us who were undiagnosed for a few decades found that we needed a few years to feel better.  It took me about 2 years to stop improving.

 

Also, some of us take a long time for autoantibody levels to get to normal.  For instance, my lab's normal tTG IgA test range was 0-20.  At diagnosis I was at >200.  From 6 to 9 or 10 months gluten-free my result was in the 20's (still positive) but by 2.5 years gluten-free it was down to a 4 something.  When my test was positive I was still making autoantibodies and harming myself; it would have been impossible to recover while my immune system was still making me sick.  KWIM?

[rimsch]

The test diet period is usually to judge symptoms and how they have changed on a diet. For the gluten free diet, one usually needs 6 to 12 months to judge the effect it is having on symptoms because so many symptoms will not improve in that first half year, often arthritis, neuropathies, ataxia, comprehension and mood issues.

 

The 1-3 years is how long it can take for some symptoms to resolve in some celiacs.  Many of us who were undiagnosed for a few decades found that we needed a few years to feel better.  It took me about 2 years to stop improving.

 

Also, some of us take a long time for autoantibody levels to get to normal.  For instance, my lab's normal tTG IgA test range was 0-20.  At diagnosis I was at >200.  From 6 to 9 or 10 months gluten-free my result was in the 20's (still positive) but by 2.5 years gluten-free it was down to a 4 something.  When my test was positive I was still making autoantibodies and harming myself; it would have been impossible to recover while my immune system was still making me sick.  KWIM?

 

Thanks for your answer.

 

Could even the amount of 23.1 even though being in the normal range for my GAF - 3X Elisa antibodies (I believe, it's DGP IgA) be an indication of my "immune system still making me sick"?

 

I mean, the fact remains: My blepharitis (eye condition) doesn't feel better after being gluten-free for 9 months. 

 

What do you think about the gene-test? Do you agree with my doctor? In case such a test was be negative, could I "forget" about a possible celiac-disease and move on?`

 

(This whole celiac-thing really poses a problem for me: There are certain medicinical approaches that are worth giving a try for my condition. However, some of them have problematic potential side-effects, partially change things about your body maybe even permanently. Therefore it would be good to know BEFORE trying that stuff if my symptoms could be celiac-related and wether or not I should hope and expect my symptoms to improve just by not eating gluten.)

[nvsmom]

Thanks for your answer.

 

Could even the amount of 23.1 even though being in the normal range for my GAF - 3X Elisa antibodies (I believe, it's DGP IgA) be an indication of my "immune system still making me sick"?

 

 

I would guess, yes, to a certain extent.  When my autoantibodies were still slightly elevated at about 9 months gluten-free, I still did not feel well.  I was better in SOME symptoms but others hadn't changed (like constipation) and some were just partially better.  Symptom improvement, and types of symptoms, are slightly different for everybody so it is really hard to say what symptoms are celiac disease relaterd in people.

 

One of my worst symptoms was a rheumatic like symmetrical joint pain in my upper extremities and sometimes hips.  It was quite painful and made daily life difficult.  That took well over a year gluten-free to disappear, and I still had a really minor episode when I was accidentally glutened at Xmas (2.5 years gluten-free) for the first time in 2 years.

 

On the other hand, I have developed some pretty bad arthritis in my hips and knees and it is not celiac related.  I have no doubt that it would get worse if I was not gluten-free, but it is separate from celiac (I think LOL).  Your blepharitis could be celiac disease related and not yet improving, or it could be a separate issue.  9 months gluten-free may be enough time for some people to clear up a skin condition like that but for others it may not be. I think you could wait a bit longer (3 or so months) to see if there is any more improvements and then try other treatments. I would advise you NOT stop the gluten-free diet even though it did not help that symptom.  You had a positive result and probably have celiac disease. You could be doing a lot of future damage if you go disregard that test.

 

BTW, those with dh (skin manifestation of celiac disease) find that it can linger for quite some time gluten-free; they are also more likely to get false negative blood tests than other celiacs too, come to think of it.

 

There's too many greys when it comes to celiac disease.  Very few people get a black and white diagnosis.... I think that's why this board is so visited.

[rimsch]

Thanks for your answer! I will talk to my doctor about that stuff.

 

 

Sorry but I have to repeat this question since it's really important for me and my diagnosis:

 

 

 

What do you think about the gene-test? Do you agree with my doctor? In case such a test was negative, could I "forget" about a possible celiac-disease and move on?

 

 

[nvsmom]

The gene tests for DQ2 and/or DQ8 are pretty good at letting one know if they are in the higher risk category for celiac disease.  About 97% of celiacs have the genes, so if you don't have them it is unlikely that you have celiac disease, but it is not impossible. We do have one of two people in the last few years who appear to have celiac disease without the genes.  It is an extremely rare occurrence though.

 

If the gene tests are negative it means that they do not support your celiac disease diagnosis.  A negative gene test does not discount the original diagnosis though.  You still had a positive celiac disease test which has gone down to normal while on the gluten-free diet.  That's still, most likely celiac disease.

 

Even with the gene tests, it is still pretty grey.

 

If you want to disregard the positive test, you need to find something else that caused that positive.

 

If you do go back to a normal diet, which is not something I would recommend to anyone who has tested positive for celiac disease, continue to be retested every six months to a year, for a few years.  I'd be willing to bet money that the positives will eventually get more positive once you get sick enough for a more definitive diagnosis.... That's the most annoying things about celiac disease testing, it doesn't work until you are quite sick.

 

Best wishes.