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mamaof7
Go to solution Solved by knitty kitty,

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mamaof7 Newbie

For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful. 

 

"GLIADIN (DEAMID) AB, IGA

FLU

Value  0.84

Reference Range: 0.00-4.99

No further celiac disease serology testing to be performed.

INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA

A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."

 

Anyone know what in the world this means. She isn't scheduled to see GI until late April. 


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trents Grand Master
(edited)

Welcome to the celiac.com community, @mamaof7!

It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. 

The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate.

There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests.

All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid.

It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies. 

 

Edited by trents
Aretaeus Cappadocia Enthusiast
On 1/4/2026 at 1:49 PM, mamaof7 said:

For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful. 

 

"GLIADIN (DEAMID) AB, IGA

FLU

Value  0.84

Reference Range: 0.00-4.99

No further celiac disease serology testing to be performed.

INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA

A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."

 

Anyone know what in the world this means. She isn't scheduled to see GI until late April. 

tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending"

We eat "gluten" and our bodies digest part of it into "deamidated gliadin" (GLIADIN (DEAMID)). The gliadin is what actually triggers the Celiac disease pathway. The celiac's immune system sees gliadin much like an invading virus, and makes antibodies (AB) against gliadin. Each antibody has the ability to recognize a specific target (anti-gliadin antibodies recognize gliadin). When antibodies find their specific target, they stick to it and call in other parts of the immune system to help eliminate the target. This process also causes the immune system to make a lot more of that antibody, and your test was designed to measure if there was an elevated level of type A (IgA) anti-gliadin antibodies. Antibodies, which are also called immunoglobulins (Ig), come in different types (e.g. class "A" or "G"). Think of antibodies as different kinds of cars, and antibody types as different colors of car. An "A" type (color) is called IgA, and a G type is called IgG. IgA's are more relevant to Celiac disease than are the IgG's or other types. Unfortunately, some people don't make very much of the IgA class (like not making aqua-colored cars, even though they make the same cars in green) and that's a common reason for the gliadin-Ab-IgA test to fail to identify celiac. As Trents wrote, they should have given her a "total IgA" test and probably tested her for the anti-tTG IgA antibody.

 

mamaof7 Newbie

Ok.. these test was ordered by her primary. There was one other test showing that she is IGA deficient. I am hoping that the GI is able to give us more info in April. That just seems like an extremely long time from now.

 

We don't typically eat much gluten because it makes me feel awful (bloating, fatigue, abdominal pain, extreme joint pain, mouth sores, migraines...) but I've never been diagnosed with anything because i refuse to eat gluten in order to be tested. I dont need a dr to tell me it makes me feel poorly.. But, anyway,  2 weeks prior to this test, shortly before she started having symptoms, we dramatically increased the amount of gluten consumption in the household due to holidays and visitors and easy meals due to family sickness.. so I'm wondering if she just hadn't eaten enough to test positive??? Symptoms just kept getting worse and now that she's been off gluten again all the symptoms have disappeared. 

 

Husband and I are going to keep her off gluten for a while and try again to see if symptoms reoccur after reintroduction to gluten. Gi Dr isn't going to see her until the end of April anyways.

trents Grand Master
(edited)

It takes weeks/months for the celiac-related antibodies to dissipate once gluten is withdrawn but it also takes that amount of time for them to build up to detectable levels in the blood once gluten is reintroduced. I'm not certain about this but unlike the individual IGA celiac antibody tests results, I don't think IGA deficiency is tied to gluten consumption. You all seem to be in a Catch 22 situation here.

You GP ordered the wrong test. He/she should have ordered an IGG panel.

Edited by trents
Aretaeus Cappadocia Enthusiast

"I'm wondering if she just hadn't eaten enough to test positive?"

--> Because your daughter is "IGA deficient", the (gliadin IGA) test she was given could not work properly and the result of that particular test was meaningless. The amount of gluten she did/didn't eat would not matter for that part, whether or not she actually has celiac disease. If instead she had had normal levels of IGA in her blood, then the question of how much gluten she was eating would become relevant.

  • Solution
knitty kitty Grand Master
(edited)
On 1/6/2026 at 9:29 AM, mamaof7 said:

Ok.. these test was ordered by her primary. There was one other test showing that she is IGA deficient.

That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so how much gluten was eaten is moot. 

Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.  

Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change. 

Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination.

It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  

Edited by knitty kitty
Typo correction

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trents Grand Master

Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.

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