Requesting Some Help With Test Results

[angelos1234]

Hello every1, 

 

I just wanted a couple of minutes of your time to help me read the results, I wanted to be tested for celiac, my doctor thought it wouldnt hurt to check for anti-tTG (?), she told me its the most sensitive one. Well below are my results, I guess im a negative (?) but the ref. range got me a bit confused, cause I thought I saw somewhere I might be weakly positive? I don't know. I havent visited the doctor yet, cause it will take a while, but if you got any insight, it d be greatly appreciated. 

 

In any case, good luck with your struggle everyone, and keep up the good work in here !

 

[nvsmom]

Welcome to the board.

 

It looks like your reference ranges are:

<20  (less than 20) Negative

20-30 Weak Positive

>30  (greater than 30) Positive

 

If that is correct, your tTG IgA and tTG IgG are both negative at 6.0 and 2.0.

 

If you strongly suspect celiac disease, you could request further testing with the deaminated gliadin peptides tests (DGP IgG, DGP IgA) or the endoscopic biopsy.  You will need to be eating gluten in the 2-3 months before the tests are done or they could be a false negative.

 

If you suspect gluten is a problem, it could be non-celiac gluten sensitivity (NCGS) which is much more common than celiac disease and has essentially the same symptoms.  The only way to test for NCGS is a (3-6 month) trial on the gluten-free diet.  If your health improves then you have solved your problem.  

 

Best wishes.

[angelos1234]

Hey hello and thank you very much for you input! My doctor had also advised me to take another couple of tests, anti- AGA  and anti-EMA. Sry if that doesnt make sense, do those have to do with the ones you mentioned already?

 

As for NCGS, I havent had the time to look it up, but it seems to be some kind of gluten intolerance without the "aggressive" pathogenies of celiac, like intestinal damage? I didn't even know there was such a thing! I it also seems to be related to the FODMAP diet, which I have visited at some point to alleviate symptoms relating to my gut. 

 

The reason I was tested for celiac was general, mild chronic IBS symptoms, hashimoto's thyroiditis and a couple other hints pointing that way. I am open to suggestions, and in any case, thank you very much for NCGS- I love reading about that stuff, I want to put the pieces together and form the puzzle.

[nvsmom]

Happy to help if I can.  

 

The anti-EMA is the EMA IgA (endomysial antibodies).  that is a great test that is very specific to celiac disease, and fairly sensitive, but it is very similar to the tTG IgA test - it just indicates that the disease is a bit more advanced.  It is really unusual to get a positive EMA IgA when the tTG IgA is negative, but a negative EMA IgA with positive tTG IgA is not that unusual.

 

The anti-AGA is the antigliadin antiodies tests (AGA IgA and AGA IgG).  This is an older and less reliable test that is being slowly phased out in favour of the newer DGP tests, which are more sensitive.  They can be helpful, but false negatives are more common in the AGA tests than with the other tests.

 

One thing that is good about the AGA tests is that some doctors believe that those with NCGS can get a positive in this test.  I'm not sure how sensitive it is for NCGS.  Many doctors don't accept that it can indicate NCGS - it will depend on your doctor.

 

It may also be a good idea to get your total serum IgA (immunoglobulin A) checked.  It's a control test that looks for IgA deficiency because low IgA will cause false negatives in all IgA based celiac tests (like tTG IgA, AGA IgA, etc).  About 1 in 20 celiacs have low IgA so it is often screened for when doing celiac disease tests.

 

This report has more info on the tests (pages 8-13):

Open Original Shared Link

 

This article has more info on the AGA test and NCGS:

Open Original Shared Link

 

Some doctors think that NCGS does not exist, and that it is a FODMAP thing, but not all doctors accept this - some patients feel better with just cutting the gluten but can handle other parts of the FODMAP diet.  Jury is still out I guess, but I've heard too many stories to stop believing NCGS is real.

 

NCGS has many of the same symptoms as celiac disease, and some are aggressive, but they will not have intestinal damage or the DH rash.  Symptoms can include fatigue, pain (joint, stomach, head), anxiety, anemia, vitamin deficiencies...It can be quite nasty.  NCGS can turn out to be early or latent celiac disease... just nasty.

 

Because you have celiac disease symptoms, along with Hashimoto's, I think it is a good idea to get as much celiac testing done as possible.  Hashi's and celiac disease often go hand in hand.  

 

After your testing is done, and if your results continue to be negative, consider trying the gluten-free diet for 6 months.  Hopefully it will help.  

 

Good luck!  

[angelos1234]

Wow that put me a lot of thoughts in my head! Really helpful to know all that! I guess I have to find about the DGP tests or else just ask a dcotor to prescribe an endoscopic biopsy and be done with it! I know for a fact that improving my diet and concentrating more on pure, protein based meals in the long run helps me a lot. Tbh, I have never experienced severe symptoms other than IBS, like improper weight gain, or super anxiety or anaimia or such things.

 

In fact I have been overweight for the most part of my life, but I do know there is strong correlation between my weight and general well being concerning syptoms, when I follow a strict diet for months, much more than the average person. I will certainly continue testing before I follow a low FODMAP or even gluten free diet, but its good to know that these are actual problems, sometimes more severe than others, but its real and its not in our heads, like doctors had been suggesting for years now with their psychosomatic BS (sry for the language). Thanx for the help again, you have a wonderful community here, keep up the good work.

[nvsmom]

No worries.  I would guess that at LEAST a third of the people around here were told it was in our heads or that it was "normal" for us.  Uh-huh. 

 

I too tend to gain weight when not feeling well.  I'm not the typical celiac either.

[angelos1234]

So I did the tests and Im currently awaiting for the next results, and I was very specific on the test I wanted to take, and after some clarifications im still not sure they are the correct ones. The new ones are: IgA/IgG DGP/AGA they are described that way. I was pretty clear on the tests but those were availabe. Does it have to do with what you already told be about: "it is being slowly phased out in favour of the newer DGP tests, which are more sensitive", thus the confusion in the name? Thanx for any help!

[nvsmom]

I don't think I have ever seen the tests written that way, so I'm not sure what they ordered for you.  Hopefully they ordered both deaminated gliadian peptides tests (DGP IgA and DGP IgG) and both ant-gliadin antibodies tests (AGA IgA and AGA IgG).  The names are very similar and have caused a good deal of confusion among celiacs.  

 

Many labs are slow to change to the newer DGP tests, which have been available for at least five years.  My labs did not even have the AGA test, or genetic tests, available when I was tested.  Our diagnostic process is often limited by what is available and our doctor's knowledge and willingness to go that extra step for us.... It can be frustrating.

 

Good luck with the labs.  Keep eating gluten until they are done.  Enjoy a doughnut for me.  

[angelos1234]

Hey hello, just got me results, they are obviously negative again, although I do think they are the AGA ones(they clearly read "anti-gliadin antibodies" at the start). Really frustrated, why do they mark them asa anti-DGP ones? They are obviously not the ones I needed... but in any case, I just thought its another set of exams, I dont think they should be wasted. Do they help in any case, with celiac or NGCS? Should I drop the aDGP test altogether or insist on having it?

 

Thanx for your help!

 

[nvsmom]

I don't know... you could always try the DGP tests, if you can get them.  The DGP tests are similar to the AGA tests but they are more sensitive; the DGP less likely to have a false negative result than the AGA but those AGA tests do still catch many celiacs.

 

If you do get additional blood tests, you might want to request that the genetic tests (DQ2 and DQ8) be done as well.  Almost all celiacs have at least one of those genes, which 30% of the world carries.  It is quite unlikely that you would have celiac disease if you have negative blood tests and your genetic tests are negative.  If the genetic tests are positive and your blood tests are negative, that also means you most likely do not have celiac disease, but there is a chance of a false negative result.  Some celiacs are seronegative and are diagnosed  only with the endoscopy biopsy, but the vast majority have at least one positive blood test.

 

If you don't mind getting poked with the needle again, and this is not costing you money, then you may as well get tested, otherwise I would advise you to try the gluten-free diet for 6 months to see if you get better (if you have NCGS).  Right now it looks like you most likely do not have celiac disease, although there is a small chance that the DGP tests could show up positive for celiac disease.  The AGA tests are not very sensitive for NCGS, so a negative AGA does not mean you do not have NCGS - only a good response to the gluten-free diet is diagnostic of NCGS.

 

Good luck!

[RMJ]

Can you call the lab and ask? DGP is deamidated gliadin peptides, so it sort of is a gliadin test. I don't see why they would put DGP in the name if it wasn't relevant to what was done.

[angelos1234]

thanx for both of your inputs, I will definitely call the lab and ask to talk to their doctor, apart from that, I will continue digging. Maybe i will look up those genetic tests as well. It costs me money yeah, but putting my mind at ease or finding out if theres anything wrong is far more precious to me than some hits to my pocket. 

 

 

TBH If im not really content with my blood tests, I might as well end up doing the endoscopy anyway. I don't think it's that bad, right?

 

In any case thanx for your input, have been more than helpful

[angelos1234]

So I checked with another medical center and they confirmed the name of the examination. I can't be 100% sure, but its just too costly to go and have the same examinations again just for confirmation purposes. Is there some other way I can test for celiac, other than endoscopy, which maybe can hint more at celiar or not? Like some form of medication you can take from the pharmacy for example. By this time, im pretty sure im closer to NGCS than celiac, so I wouldnt want to test your patience, but if I cut gluten from my diet, if I want to take some testing in the future, how long should I include gluten into my diet before getting tested again?

 

Apart from that, I would like to begin the FODMAP diet asap, I think ive awaited long enough!

[nvsmom]

The only tests for celiac disease are the previously mentioned blood tests, the endoscopic biopsy, and (only for those with the DH rash), a skin biopsy.  The genetic tests will only tell you if you are at risk of developing celiac disease.

 

Blood tests need 8-12 weeks of eating gluten, the endoscopy needs 2-4 weeks, and the rash just needs to be present for testing to be as accurate as possible.

 

There are no medications for celiac disease.  Those medications that may claim they help with gluten digestion will never work for a celiac - don't buy them or try them.

 

Good luck with FODMAP!

[angelos1234]

I didn't phrase it well enouhg, I meant something indicative of celiadc other than the blood tests- not cure itself! Thanx for your help, I ahave laready started fodmap, keep up the good work!

[nvsmom]

I'm afraid there is nothing that you can purchase to help diagnose yourself with celiac disease... other than gluten-free food!