High Deamidated Gliadin Test

[appletree729]

Our pediatrician is not as familiar with these tests, (I specifically requested this one), so I'd like to ask here and I'm hoping you all will share your wisdom:)  We've been through so much with digestive and growth issues with all of my kids (4 of them), and most celiac tests have been negative so far.  Everyone does have at least one component of the genetic marker though.

 

Anyway - here is the test result:

 

Gliadin (Deamidated) 

AB (IGG)

 

result:  21 H

(reference range indicates anything over 20 = antibody detected)

 

Tissue transglutaminase was negative, and I thought we requested an endomysial antibody, but that result is either not available yet or for some reason it wasn't done.  IgA is within normal range.

 

Some information I read indicates that a high deamidated gliadin alone almost unequivocally indicates celiac disease, and other information tells me it is not very specific and doesn't matter.    Thoughts?

 

Thank you so much for reading.  I just want to know what is going on with my children

 

[CanadianK]

New here and still learning but thought I would add a little info from my experience. I had the IGG test and mine came back as Elevated. The notes from the lab say "With a negative result for Anti-Tissue Transglutaminase IgA, results are consistent with non-Celiac gluten sensitivity". I had been gluten light for 2 years prior to this test so I'm just finishing up the gluten challenge to get some definitive results. I'm assuming your children are still eating gluten when you've done the tests? 

 

I can sympathize with you wanting to help your children. My youngest daughter complains a lot and has many of the same issues as me and it is very hard to not know how to fully help them…we will be getting tests done for her as well.

 

I'm not sure if this helps and there are others here with more experience than me so I'll pass the torch over to them. I look forward to hearing what others say! 

[appletree729]

Thank you so much for your response!  And yes- it does help very much!  My lab report did not say much other than "consider DQ2 and DQ8 testing to rule out celiac disease.  We've done that in the past and she has at least one of those.

 

So can I clarify that you had the *deamidated* gliadin igg test?  I actually thought that this test was specifically for celiac disease and actually could not give information on gluten sensitivity or intolerance?  From my understanding, it was the old gliadin igg test that did that?

 

This is all so confusing and she doesn't have her GI appointment until December!!  I hate the idea of needing to keep her on gluten that long if it is causing problems :/

 

One thing that I am really having trouble finding is information about interpreting results of these tests.  I've found studies indicating that sometimes, blood tests alone can provide enough information for a diagnosis, when the deamidated gliadin test is used in combination with tissue transglutimase and endomysial abs, but what I'm not finding is if all of these tests need to come back positive together, or if just one of them needs to be positive.  Maybe doing all tests together simply increase the likelihood of catching something, rather than needing to work in combination with each other for a diagnosis?

 

Thanks to all reading.  I would really appreciate feedback from anyone who might know more about this!  

[CanadianK]

I actually can't find the info as to whether or not this was the "deamidated* gliadin test.

 

The test calls it an "Allergy IgG - Gluten (Gliadin)". It may be the old one, which is why I'm doing further testing… Again, I was gluten light for almost 2 years when these tests were done.

 

I also had the Anti-Gliadin IgA which was just under negative.

 

The lab also noted in regards to my tTg IgA (which was just under negative): 

 

"A negative result indicates that patient does not have elevated levels of IgA to tTG. It does not preclude a possibility of a negative result due to selected IgA deficiency or gluten deficient diet. If Clinical Symptoms are ongoing and consistent with those observed for celiac disease, it may be of value to test for IgG to gliadin (if patient is not on gluten deficient diet)" 

 

Again, not sure if this is helpful. Can you look up the tests online and see how they're interpreted at your lab? There isn't much info in the lab I used, but maybe at yours?

 

 

[GottaSki]

Welcome appletree!

The Deamidated Gliadin Peptide tests are often the first to be positive in children. The testing process for celiac disease can be very frustrating...especially if all four children have symptoms but are testing negative.

You mention IgA is within normal range...is that Total Serum IgA or tTG? do you have those numbers?

Did she have a tTG-IgG as well as tTG-IgA?

The endomysial antibody is often only run with a positive tTG.

Has there been any nutrient testing?

How old is this child? Symptoms?

Here is the question I pose each time someone tests positive to DGP. What does their doctor attribute the positive result if it's not celiac disease? Also, would the pediatrician be willing to diagnose with positive DGP, positive gene and a positive response to a gluten free trial?

I would try to move up the GI appt. make it clear there was a positive celiac antibody test and you would like the GI appt as soon as possible. Additionally, might want to check if the GI has specific experience/knowledge of celiac disease.

Hang in there : )

[appletree729]

Thank you so much for the reply, Lisa!

 

To answer your questions - 

 

total serum IgA is 104, within the normal range (reference is 41-368 mg/dL)

 

tTG - I'm assuming this is the tissue transglutaminase test?  if so, it looks like she was only tested for the IgA and *not* IgG.  IgA was within normal ranges.

 

No nutrient testing so far.

 

She is 7 years old, has had the basic celiac panel done a few years ago, which was normal.  But according to our GI, it's important to test often for children in higher risk categories (which we are placed in - lots of GI symptoms, we have the genes, and at least one family member has doctor diagnosed celiac - but this is my husband's aunt - so great aunt to my child)

 

And yes, she does have symptoms - she's growing fine, but lots of tummy aches and loose stool.  And some behavior/very high anxiety/intensity of emotion issues - maybe related, maybe not!  She also often gets a skin rash, but I'm not sure it's a DH rash - doesn't seem as itchy as people describe.  

 

The GI specialist is a great celiac doctor - she's the director at the Center for Celiac Disease at CHOP.  We've seen her for my son's issues (he's 2 and has FPIES, as does our other daughter) and are in the process of waiting for his follow-up appt as well.  Unfortunately, there is no chance of moving the appt up, but we're on the waiting list if there are any cancellations, and I've left a message for her to call me about the result so I will have a chance to ask her about diagnosis based on that result, gene and gluten-free trial as opposed to needing to do a biopsy as well.  I should also mention that she is not the one who requested this bloodwork, which is obviously incomplete.  This was our regular pediatrician, who only did it at my request (which I don't think I was specific enough about!)

 

And I will also make sure to ask her your question about what a positive result could be if not celiac disease…  

 

THANK YOU for your response, Lisa.  I just want to get to the bottom of this, so REALLY appreciate you taking the time to share your knowledge    

[GottaSki]

Thank you so much for the reply, Lisa!

 

To answer your questions - 

 

total serum IgA is 104, within the normal range (reference is 41-368 mg/dL)

 

tTG - I'm assuming this is the tissue transglutaminase test?  if so, it looks like she was only tested for the IgA and *not* IgG.  IgA was within normal ranges.

 

No nutrient testing so far.

 

She is 7 years old, has had the basic celiac panel done a few years ago, which was normal.  But according to our GI, it's important to test often for children in higher risk categories (which we are placed in - lots of GI symptoms, we have the genes, and at least one family member has doctor diagnosed celiac - but this is my husband's aunt - so great aunt to my child)

 

And yes, she does have symptoms - she's growing fine, but lots of tummy aches and loose stool.  And some behavior/very high anxiety/intensity of emotion issues - maybe related, maybe not!  She also often gets a skin rash, but I'm not sure it's a DH rash - doesn't seem as itchy as people describe.  

 

The GI specialist is a great celiac doctor - she's the director at the Center for Celiac Disease at CHOP.  We've seen her for my son's issues (he's 2 and has FPIES, as does our other daughter) and are in the process of waiting for his follow-up appt as well.  Unfortunately, there is no chance of moving the appt up, but we're on the waiting list if there are any cancellations, and I've left a message for her to call me about the result so I will have a chance to ask her about diagnosis based on that result, gene and gluten-free trial as opposed to needing to do a biopsy as well.  I should also mention that she is not the one who requested this bloodwork, which is obviously incomplete.  This was our regular pediatrician, who only did it at my request (which I don't think I was specific enough about!)

 

And I will also make sure to ask her your question about what a positive result could be if not celiac disease…  

 

THANK YOU for your response, Lisa.  I just want to get to the bottom of this, so REALLY appreciate you taking the time to share your knowledge  

 

No worries...I know how frustrating this process can be...especially for children and their folks.

 

Glad to hear you have a Celiac savvy GI already.  While you wait I would have your primary order:

 

tTG-IgG -- yes this is the IgG version of the Tissue Transglutaminase antibody test.

 

If the will also have them order as many of these as they are willing:

 

B6, B12, D, K, Iron, Ferritin, Copper and Zinc

and if she hasn't had these recently:

 

Comprehensive Metabolic Panel CMP

Complete Blood Count CBC

 

Hang in there Mom and family!!!!

[appletree729]

Just wanted to post an update.  I emailed the doctor today after not hearing back from them last week (I had left a message via a receptionist), and I just got a phone call from the GI dept requesting to see her at 2pm tomorrow!  Hopefully I will be able to update with more information after the appointment, in case anyone else out there is wondering about this specific test and maybe finds themselves in a similar situation....

 

I suspect she is going to want to do more complete bloodwork (which I'm dreading because my girl has extreme anxiety about needles ) Will let you all know how it goes!!

[nvsmom]

Hi. I just wanted to give you this link to the World Gastroenterology Guidelines to celiac disease (which I post so much that people are probably sick of me LOL). If you look at page 12 of the report you will see a chart that talks about the specificity of the deaminated gliadin (peptide) IgG test, otherwise known as the DGP IgG; it is 99-100% specific to celiac disease - one of the most specific out there - so chances are that she has celiac disease.

Open Original Shared Link

 

Good luck with the GI!

[appletree729]

Thank you, Nicole!!  I have not seen that chart yet, so I'm glad you took the time to post it again  I am so very curious to see what her doctor has to say about all of this...

[GottaSki]

Thank you, Nicole!!  I have not seen that chart yet, so I'm glad you took the time to post it again  I am so very curious to see what her doctor has to say about all of this...

Good luck Apple!

PS...Nicole good information is always a good idea.

[appletree729]

Update time!

 

Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/  She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).

 

She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions…  she specifically mentioned severe acid reflux or food allergies.  So my daughter's result could either be from one of those, or it could in fact be *early* celiac.  

 

So the plan is to keep a food diary for at least a week, along with noting symptoms, etc.  then continue on a regular diet for 6 months and then test again.  If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs.  If her symptoms worsen, we do the labs closer to the 3 month mark.

 

I wanted to update for anyone who might find themselves in a similar situation  

 

Of course I wish I had every answer now, but this is the way things go I suppose…  one step at a time.  I can wait for 6 months

[nvsmom]

Update time!

 

Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/  She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).

 

She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions…  she specifically mentioned severe acid reflux or food allergies.  So my daughter's result could either be from one of those, or it could in fact be *early* celiac.  

 

So the plan is to keep a food diary for at least a week, along with noting symptoms, etc.  then continue on a regular diet for 6 months and then test again.  If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs.  If her symptoms worsen, we do the labs closer to the 3 month mark.

 

I wanted to update for anyone who might find themselves in a similar situation

 

Of course I wish I had every answer now, but this is the way things go I suppose…  one step at a time.  I can wait for 6 months

 

Huh.   I thought the EMA IgA had about the same specifity as the DGP IgG but it's a bit tougher for kids to get a positive on that one as it tends to be positive once the disease is more advanced. It's a very similar test to the tTG IgA and is rarely positive if the tTG IgA is negative - I think I've only seen that around here once in the last two and a half years that I've been hanging around.

 

Even if the DGP IgG is "only" 95% specific to celiac disease, I would think she would be looking at celiac disease as the culprit rather than acid reflux and food allergies.  I know the ttG IgA can (5% of the time) have a weak positive caused by thyroiditis, diabetes, crohn's, colitis, chronic liver disease, or a serious infection.  It tests fora possible attack to the endomysial layer of the intestines and other health issues can cause some damage similar to celiac disease.  The DGP test (as I understand it - but I'm not an expert) is positive when the body reacts to a deaminated gliadin peptide, which I believe is an artificial gliadin/gluten - the patient is reacting to gliadi/gluten....  would think that would be pretty specific.

 

But I'm not an expert.

 

I just get frustrated when doctors want people, especially children, to continue to damage themselves, to an even greater degree, so they can get a positive test result and make the "official" diagnosis.  Six months is a long time to purposefully make a child ill.    I think a better tack would have been to try the gluten-free diet for 6 months, while keeping a food and symptom journal, and then retest all the tests to see if they have gone down, even the negative ones.  If they go down, that's an answer too and you've avoided an extra 6 months of poor health and growth.

 

A few more articles, in case you like to read this stuff too:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

Best wishes with whatever you decide to do.

[GottaSki]

Update time!

 

Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/  She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).

 

She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions…  she specifically mentioned severe acid reflux or food allergies.  So my daughter's result could either be from one of those, or it could in fact be *early* celiac.  

 

So the plan is to keep a food diary for at least a week, along with noting symptoms, etc.  then continue on a regular diet for 6 months and then test again.  If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs.  If her symptoms worsen, we do the labs closer to the 3 month mark.

 

I wanted to update for anyone who might find themselves in a similar situation  

 

Of course I wish I had every answer now, but this is the way things go I suppose…  one step at a time.  I can wait for 6 months

Thanks for the update and asking the doc about what else could elevate the DGP....that is the first time someone came back with an answer...I've got something to research now

[appletree729]

 I know :/  I'm trying to be positive about it all, but my understanding was that the test result was more significant than she seemed to think it was.  But then I also feel like I'm being a hypochondriac sometimes, and want to respect the doctor's training and experience (but not blindly).  Anyway…  we are going to go ahead with the six month trial.  Her symptoms at this point are not so bad that they are really affecting her quality of life or anything, and the doctor did give us the recommendation to repeat the labs earlier if her symptoms worsened.  With everything we've been through with my other children as well, I've come to really appreciate the importance of an actual diagnosis.  Especially with children.  There also is that possibility that perhaps it is not celiac disease and I'd like some answers on that then as well…  we still don't have answers with the other kids (one of them has even gone through with the biopsy) so perhaps it is not celiac after all..  although my gut (pun intended, lol) tells me it is…  who knows….

[GottaSki]

 I know :/  I'm trying to be positive about it all, but my understanding was that the test result was more significant than she seemed to think it was.  But then I also feel like I'm being a hypochondriac sometimes, and want to respect the doctor's training and experience (but not blindly).  Anyway…  we are going to go ahead with the six month trial.  Her symptoms at this point are not so bad that they are really affecting her quality of life or anything, and the doctor did give us the recommendation to repeat the labs earlier if her symptoms worsened.  With everything we've been through with my other children as well, I've come to really appreciate the importance of an actual diagnosis.  Especially with children.  There also is that possibility that perhaps it is not celiac disease and I'd like some answers on that then as well…  we still don't have answers with the other kids (one of them has even gone through with the biopsy) so perhaps it is not celiac after all..  although my gut (pun intended, lol) tells me it is…  who knows….

If possible it really is best to get an accurate diagnosis....just sad that it can be such a frustrating process.