Help, conflicting results

[KISHAB02]

Hello my 12 y/o was diagnosed by an allergist as having Celiac Disease. However Her GI is insisting that the allergist was wrong and does not have celiac disease. The allergist test showing TTG was less than 1.0 but the IGA was 261. She said that because she has the positive antibodies for Celiac that she does in fact have Celiac. However the GI is firm that she would need both the TTG and IGA to be positive and at 1.0 the TTG is negative. 

Who do I go with? Any help would be so helpful I feel so confused by all of this. Thank you

[trents]

30 minutes ago, KISHAB02 said:

Hello my 12 y/o was diagnosed by an allergist as having Celiac Disease. However Her GI is insisting that the allergist was wrong and does not have celiac disease. The allergist test showing TTG was less than 1.0 but the IGA was 261. She said that because she has the positive antibodies for Celiac that she does in fact have Celiac. However the GI is firm that she would need both the TTG and IGA to be positive and at 1.0 the TTG is negative. 

Who do I go with? Any help would be so helpful I feel so confused by all of this. Thank you

Welcome to the forum, KISHAB02!

Based on the limited data you were able to give us, I would side with the GI doc at this point. Let me explain.

First, the "IGA" you refer to is likely what we know as the total IGA score. It cannot be used to diagnose celiac disease. There are also particular IGA tests that should be run to detect celiac disease.  The various kinds of IGA antibodies add up to make the total IGA. One of those IGA test kinds is the tTG-IGA. It is the most common test run by physicians as it combines good sensitivity with good specficity (specific for celiac disease and not other inflammatory processes). If the total IGA is low, it can produce false negatives on the tTG-IGA and other particular IGA tests. Your daughter's total IGA at 261 was not low. It is within the normal range. So, in your case, a negative test result for the tTG-IGA cannot be blamed on low total IGA.

But there are other tests that can be run for celiac disease besides the tTG-IGA and we often wish physicians would run them because the tTG-IGA can miss some people who actually do have celiac disease. This is particularly true for pediatric patients whose immune systems are immature and often respond atypically to the tTG-IGA test. I would have herr retested and ask the GI doc for these additional tests to be run: EMA, Deamidated gliadin peptide (DGP IgA and IgG).

Here is a primer for tests that can be run for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is also possible that he has NCGS (Non Celiac Gluten Sensitivity).

Your daughter must continue to eat regular amounts of gluten until all testing is complete in order to ensure the tests results are valid.

[RMJ]

As Trents said, it is not clear which tests your daughter had. 

TTG could be TTG-IgA or TTG-IgG.

IgA could be TTG-IgA, DGP-IgA or total IgA.

Could you post a photo of the actual results?

[KISHAB02]

Hi yes!  How do I insert a photo 🤦🏽‍♀️Thank you 

[trents]

1 hour ago, KISHAB02 said:

Hi yes!  How do I insert a photo 🤦🏽‍♀️Thank you 

Click on the three dots in the upper right corner of a new post window and choose "Edit". The find the paperclip at the bottom. You only have a time window of a few minutes to edit a post or add a photo.

Edited April 19, 2023 by trents

[Scott Adams]

2 hours ago, KISHAB02 said:

Hi yes!  How do I insert a photo 🤦🏽‍♀️Thank you 

When you have a reply field open there is a "choose files" option if it is on your desktop...select it, then click in the field where you want to insert it and click on the image that was uploaded...there is an "insert" on the image.

An easier way is the copy the photo...on desktop control C, on a phone hold your finger on the image until you have the "copy" option, then past it into the field.

[KISHAB02]

Thanks but I don't see any of these options... here is what the test says...

 

CELIAC DISEASE COMPREHENSIVE PANEL,

REFLEX GLIADAN IgG

Interpretation, No serological evidence for celiac is present. tTg may normalize in individuals with celiac disease who maintain a gluten free diet. 

TISSUE TRANSGLUTAMINASE AB,      <1.0

IGA

Value.     Interpretation

<15         Antibody not detected

> or = to 15         Antibody detected

IgA                 261

 

[RMJ]

I can certainly see why you’re confused. Something doesn’t make sense.  I don’t see a positive test for celiac antibodies that the allergist could have used for diagnosis.  What is shown isn’t a comprehensive panel. Is there a result for the Gliadin IgA or IgG?

Sometimes a “reflex” test means they may do more testing, depending on the original results.

It is possible that the allergist doesn’t know what she is talking about.  A lot of doctors know very little about celiac disease, or are just plain wrong.

[KISHAB02]

no thats all it says... ive been trying to figure how to post the pic but to no avail, i've tried desktop and cell phone

[Scott Adams]

If I understand what you posted correctly, your tTG-IgA (tissue transglutaminase IgA) was 261, and anything higher than 15 is positive (please let me know if this is correct). This means you are 17.4 times higher than the cut off for celiac disease, and in Europe they are diagnosing people with celiac disease using only blood tests and no biopsy if their tTG blood test results are 10x that level or higher.

More about this test:

Quote

tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease - This test measures the levels of IgA antibodies to tissue transglutaminase, an enzyme that is involved in the immune response to gluten in those who have celiac disease. The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

 

[RMJ]

Do any of the numbers have units after them?  This would help to figure out which number goes with which test.

For example is it 261 mg/dL?

Is it <1.0 u/mL?

[KISHAB02]

Yes The Tissue transglutaminase AB is <1.0 u/ml

the IgA is 261 mg/dl 

I wish I could put the picture but I cannot figure it out 😩

[KISHAB02]

CELIAC DISEASE COMPREHENSIVE PANEL,

01/10/2023 13:50

REFLEX GLIADIN IgG

Interpretation

SEE BELOW

No serological evidence for celiac disease is present. tTG may normalize in individuals with celiac disease who maintain a gluten free diet. If high suspicion of cellac disease, consider HLA DQ2 and DQ8 testing to rule out celiac disease.

TISSUE TRANSGLUTAMINASE AB,

<1.0

1GA

Value

<15.0

Interpretation

Antibody not detected

15.0

Antibody detected

IGA

261

Performing Organization Information:

Site ID: AMD

celiac

"antibodies

<15.0 U/ml

36-220 mg/dL

[RMJ]

12 minutes ago, KISHAB02 said:

Yes The Tissue transglutaminase AB is <1.0 u/ml

the IgA is 261 mg/dl 

I wish I could put the picture but I cannot figure it out 😩

OK!  That tells me that the <1.0 result is definitely the TTG test, and the 261 is total IgA, which is in the normal range.  Total IgA is often run with the celiac tests because if the total IgA is low the other IgA tests may not be accurate.

It is possible that the allergist was confused and thought that the 261 was a celiac test. The GI is correct that these results do NOT indicate celiac disease.  However it is not a comprehensive panel.  There are four main antibody tests for celiac disease.  They do not all have to be positive to diagnose celiac.  If your daughter has celiac symptoms you may want to ask the GI to run the additional tests.

TTG IgA (already run)

TTG IgG

DGP IgA

DGP IgG

[KISHAB02]

She said the normal range is 36-220 and the 261 indicates celiac antibodies which indicates celiac disease, while the GI says that’s not true…thank you all for your help by the way

[trents]

I think it's important to realize that the allergist was operating in an area outside of her expertise. Celiac disease is not an allergy. It is an autoimmune disorder.

[Scott Adams]

I agree if your IgA is 261 mg/dl  that is not measuring anything for celiac disease, it just measures the accuracy of the other blood tests done for celiac disease.

[RMJ]

Labs vary a bit in what they call normal for total IgA.  According to Mayo Clinic your daughter’s value would be normal (scroll down to Reference Values).

Mayo Clinic Total IgA testing

[KISHAB02]

Wow thank you. 

Finally here is the photo if anyone wants to add any thoughts i would appreciate it thank you all

[KISHAB02]

On 4/19/2023 at 5:12 PM, RMJ said:

As Trents said, it is not clear which tests your daughter had. 

TTG could be TTG-IgA or TTG-IgG.

IgA could be TTG-IgA, DGP-IgA or total IgA.

Could you post a photo of the actual results?

Finally figured out how to add the photo 

Then she added this

[RMJ]

Allergist definitely wrong. The 261 is not celiac antibodies.

[KISHAB02]

Now I’m torn between letting her have gluten again, because since going gluten free some of her symptoms have improved significantly, but certainly relieved to know it’s not celiac disease , thank you for your help

5 minutes ago, RMJ said:

Allergist definitely wrong. The 261 is not celiac antibodies.

What antibodies is the 261 indicating 

[trents]

2 hours ago, KISHAB02 said:

Now I’m torn between letting her have gluten again, because since going gluten free some of her symptoms have improved significantly, but certainly relieved to know it’s not celiac disease , thank you for your help

What antibodies is the 261 indicating 

Total IGA antibody load. It's only relevant if it's low. It is comprised of celiac antibodies plus other IGA antibodies that have nothing to do with celaic disease. If it is low it can skew the individual celiac antibody tests down toward the negative range.

You need to also consider that your daughter might have NCGS instead of celiac disease, which would mean she still needs to eliminate gluten.

[shadycharacter]

6 hours ago, KISHAB02 said:

 

What antibodies is the 261 indicating 

There is a relatively common genetic condition called "selective IgA deficiency". Often asymptomatic, but means that a standard Ttg-IgA test for celiac disorder is unreliable and likely to be negative even if the person has celiac. Around 2% of celiacs have selective IgA deficiency.

[KISHAB02]

4 hours ago, trents said:

Total IGA antibody load. It's only relevant if it's low. It is comprised of celiac antibodies plus other IGA antibodies that have nothing to do with celaic disease. If it is low it can skew the individual celiac antibody tests down toward the negative range.

You need to also consider that your daughter might have NCGS instead of celiac disease, which would mean she still needs to eliminate gluten.

Is there a test for the NCGS?