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Confused - False Positive

ccooper

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ccooper Newbie
ccooper
Posted

My 11 year old son seen the GI specialist yesterday. The GI said that he believed the blood test was a false positive. He had a score of 67(?). The 67 was high but the other two test were normal. The GI is now running a test for IgA only. What does this mean? If it's not celiac what is it? I was hoping that the celiac diagnosis was going to be our answer to his symptoms. He has a history of intestional issues (watery stools sometimes, cramping, short stature 5% range), canker sores, itchy skin and sores, fecal incontinence, IRRITABILITY (he doesn't get along with himself most of the time). Any ideas would be appreciated.

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WorryMom Newbie
WorryMom
Posted

I have done a lot of research on false positives and weak positives in the last few months because my 9 year old son's tTg IGA was 4.3 on a scale where 0-4 negative, 4-10 weak positive.

What I found indicates that you are much more likely to have a false negative than a false positive. According to most of what I read, even if not all the tests are positive they should still do an endoscopy to check for damage especially if they are having symptoms such as your son is. Did they do the endoscopy yet? Some of the things that could cause a false positive on the tTg are cirrhosis of the liver, diabetes or heart failure but this is very rare. Given his symptoms it seems much more likely he has celiac. I hope they are able to figure it out soon so your son can start healing.

My son is seeing a specialist next week. He was tested due to family history and not really sick at the time but in the last few months he has started being tired all the time and complaining of stomach aches. He has occasional bathroom issues and has become whinier than usual. I'm hoping the doctor will agree to do the endoscopy so we can see if he has it or not.

tarnalberry Community Regular
tarnalberry
Posted

Most of us here "don't believe in" false positives. Why? Because your body is not going to produce an antibody to itself with no reason and without doing damage. It's kinda what autoimmune diseases are all about.

Do you know WHICH test came back "positive"? I'm assuming, from your comment about testing total IgA, that it was the anti-gliadin IgA test. About 10% of celiacs are IgA deficient, which means that they will always have low numbers, regardless of whether or not they are producing "more" anti-gliadin IgA. But that means they'll more likely get a false negative, not positive.

ravenwoodglass Mentor
ravenwoodglass
Posted

Your son's symptoms and the postive test make it pretty certain that he is one of the 'family'. If you are going to have them do an endoscopic exam on him, which also has a risk of a false negative, you need to make sure to keep him on the full gluten diet. If you are not going to do an endoscopy then go ahead and put him on the diet.

ccooper Newbie
ccooper
Posted
  • Author

I called the pediatrician to get a list of actual scores - Here they are:

IgA - 64

Gliadian IgG - 67

TtG - 3

No biopsy has been scheduled. More blood test were ordered in order to check for IgA deficiency. Does the above mentioned scores mean anything to anyone? The doctor is calling it a false positive.

ang1e0251 Contributor
ang1e0251
Posted

Could you please put the lab's ranges with those numbers? Each lab is different.

Many, many people have false negatives but I have never heard of someone who actually had a false positive.

ccooper Newbie
ccooper
Posted
  • Author
Could you please put the lab's ranges with those numbers? Each lab is different.

Many, many people have false negatives but I have never heard of someone who actually had a false positive.

O.k, this is the best that I know:

IgA - 64 with range of 65 to 246

IgG - 67 range of 1 to 11 normal

TtG - 3 normal range 3 and below

Does this help?

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tarnalberry Community Regular
tarnalberry
Posted
O.k, this is the best that I know:

IgA - 64 with range of 65 to 246

IgG - 67 range of 1 to 11 normal

TtG - 3 normal range 3 and below

Does this help?

As I suspected, the IgG test is positive, and the others negative. The tTg test being borderline just gives you an idea of how much damage is happening. (Still, why would he have any if there wasn't some response going on?) The IgA test being low tells you nothing if he's IgA deficient. The IgG test is QUITE DISTINCTLY POSITIVE. He is clearly have an immune reaction to gluten. (Most doctors *want more* because they so hate to put their patients on a gluten free diet. BAH!)

ccooper Newbie
ccooper
Posted
  • Author
As I suspected, the IgG test is positive, and the others negative. The tTg test being borderline just gives you an idea of how much damage is happening. (Still, why would he have any if there wasn't some response going on?) The IgA test being low tells you nothing if he's IgA deficient. The IgG test is QUITE DISTINCTLY POSITIVE. He is clearly have an immune reaction to gluten. (Most doctors *want more* because they so hate to put their patients on a gluten free diet. BAH!)

The GI acted like the IgG elevation wasn't anything if the other two areas weren't positive also. If he doesn't have celiac than I want to know why the levels were so high..... I guess I will have to wait and see what happens on Monday when I get the IgA deficiency results back. I don't mind the doctor wanting to know more, but I feel like I know less than I did before I went to the office.The GI stressed that grains are a very important part of ones diet and that no diet changes should be made unless something else shows up

Jestgar Rising Star
Jestgar
Posted

***Personal opinion alert***

The GI stressed that grains are a very important part of ones diet and that no diet changes should be made unless something else shows up

That's complete and utter crap. The human race survived for thousands of years without grain.

Ask him to name you ONE essential nutrition that can only be found in grain.

tarnalberry Community Regular
tarnalberry
Posted

that might "just" be jestgar's opinion, but I think she's completely correct. in my opinion, anyway.

your doctor is full of crap if he thinks grains are a mandatory part of a diet, or even that you can't have any grains if you're gluten free. wrong and wrong.

ccooper Newbie
ccooper
Posted
  • Author

Maybe he's full of crap and being ignorant. On a positive note, maybe he just didn't want us to get to alarmed yet- so that's why he said the grain thing???? I don't know.

I have read some other post that says that an elevated IgG is sometimes something else. Any ideas?

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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