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confused

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confused Community Regular

hello, I just went and got the information from my sons celiac panel test, I had thought they did all 5 test. But now as i look at the results they are only for IgA which was normal, IgG which was very high and the ttg which was normal. This isnt enough to say if he is celiac free right? We cant get into the ped GI til april, should i take him back off the gluten-light diet until we see the ped gastro, or should i ask for the whole panel to be done again.

paula


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Lisa Mentor

I know that this has got to be frustrating!!

Test results are not my thing, but I can bump it up and hope you can get the answers from someone who does.

chrissy Collaborator

what other tests did you want done? the Ttg is the most accurate test for celiac. the only way you are going to get a positive or negative diagnosis with those test results is with a biopsy-----and your son needs to be on gluten for that.

confused Community Regular

what other tests did you want done? the Ttg is the most accurate test for celiac.

[/quotw

Oh i didnt know that was the most accurate, i thought there was a test that showed if u were Iga deficient, for the few that dont show levels in the IgA, or am I way off. Im still learning, so i could be totally off here.

paula

rez Apprentice

The current screen for Celiac that the U of Chicago uses is a total IgA and a tTG. Yes, the total serum should have been done. The high IgG means nothing unless you are IgA deficient. If you are not IgA deficient, the tTG is the best test. It's the most specific and sensitive, although it is not 100% either. If this test is positive, they will do a biopsy.

happygirl Collaborator

The EMA is just as important as the tTG. Dr. Green advises against only using the tTG or only the EMA, as they could miss Celiac cases.

rez Apprentice

I agree about the EMA. It's way more specific, but not as sensitive. That is why they use the tTG to screen and then follow up w/ the EMA and biopsy.


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chrissy Collaborator

your right, the total IgA serum should have been done, but chances are, if your son was IgA deficient, his Ttg score would have been really low, not normal. our ped gi runs a total IgA serum and a Ttg test.

so, now that we have totally confused you, what IgA test was normal? i assume you must mean the AGA IgA? and i assume it was a Ttg IgA that was normal? and the IgG that was high must be the AGA IgG? a raised AGA IgG can be caused by things other than celiac.

jayhawkmom Enthusiast

Elevated IgG does mean something. It doesn't necessarily mean Celiac - but it does suggest gluten sensitivity or other possible issues.

There are some doctors that feel that the tTg and Ema are the only tests of importance. Many others feel that all the tests provide a piece of a puzzle - and can more readily identify other issues that may coexist with Celiac, including gluten intolerance issues that will not be addressed if the tTg and EmA are the "only" tests performed.

To help unconfuse you - AGA IgG is IgG antibodies to gliadin, and AGA IgA is IgA antibodies to gliadin. Gliadin is the particle in gluten that is problematic. Elevated antibodies means your body IS producing antibodies to gliadin - which indicates an issue with gluten, regardless of a negative tTg or EMA screen. :)

chatycady Explorer

I am totally confused. I had the TTG done and it was normal. Does that mean I don't have celiac?

The gastro Dr. today took more blood for the IGA(whatever it's called) test, I think. Why would he take that test if TTG was more accurate. Help, I don't understand any of this.

jayhawkmom Enthusiast
I am totally confused. I had the TTG done and it was normal. Does that mean I don't have celiac?

The gastro Dr. today took more blood for the IGA(whatever it's called) test, I think. Why would he take that test if TTG was more accurate. Help, I don't understand any of this.

No, it doesn't mean you don't have Celiac. It does mean that your body wasn't producing enough "anti-self" antibodies to register, if you DO have Celiac.

If you are IgA deficient - with regards to your total serum IgA - the test results were not be valid. IgA deficient people have to have their results interpreted on a different scale.

Again, a positive tTg on a serum test is a pretty good indicator that you do have Celiac. However, without the other pieces to the puzzle, your doctor is missing quite a bit of information - which is probably why the other test is being run, to rule out IgA deficiency. HTH! =)

confused Community Regular
Elevated IgG does mean something. It doesn't necessarily mean Celiac - but it does suggest gluten sensitivity or other possible issues.

There are some doctors that feel that the tTg and Ema are the only tests of importance. Many others feel that all the tests provide a piece of a puzzle - and can more readily identify other issues that may coexist with Celiac, including gluten intolerance issues that will not be addressed if the tTg and EmA are the "only" tests performed.

To help unconfuse you - AGA IgG is IgG antibodies to gliadin, and AGA IgA is IgA antibodies to gliadin. Gliadin is the particle in gluten that is problematic. Elevated antibodies means your body IS producing antibodies to gliadin - which indicates an issue with gluten, regardless of a negative tTg or EMA screen. :)

Ok thank you for un-confusing me, i was so confused when i read some post lat night before i went to bed, i of ocurse was thinking about them all night.

So should i just keep him gluten free and see how he does, or wait til arpil 14th when we see the ped gastro, he wasa doing better being gluten free, but he decided he was fine and ate hot lunch yesterday and of course his stomach hurt. He said well the dr hasnt told me what i can or cant do it, so if i want to eat hot lunch I will, He is 13, so he is not listening to me. He is one of those kids if an dr told tell him what to do, he wont listen to dare ole dad, and step-mom.

His scores are as read

the range is 0-25

IgA was 12

IgG was 89

ttg was 3

the week before he had this test done the Er dr said he had gatritis.

two weeks before they said he had severe constipation

that is another reason why im so confused.

paula

e&j0304 Enthusiast

The latest GI we saw said that an elevated IgG can be caused by gastritis.

I would see another dr. or maybe have his tests re-run. I wouldn't definitely NOT be leaning toward celiac disease with those test results.

You can do a quick search for "causes of elevatd AGA IgG" or something like that and see how many other conditions can cause an elevated IgG.

jayhawkmom Enthusiast

I agree. It's very possible you aren't looking at a Celiac diagnosis, however... it's still very possible that you are dealing with a gluten intolerance issue.

If he's feeling better gluten free, encourage him to stay that way. No one needs gluten, if it makes him feel miserable, tell him not to eat it. :)

But, I would continue to try to find out the root of the problem. If it's not celiac and he still has "issues" while gluten free, there is probably more going on - than "just" an intolerance issue.

Continued best wishes,

e&j0304 Enthusiast
I agree. It's very possible you aren't looking at a Celiac diagnosis, however... it's still very possible that you are dealing with a gluten intolerance issue.

I totally agree with that. I believe that gluten intolerances are very serious as well but it important for him to know exactly what he is dealing with.

confused Community Regular
I totally agree with that. I believe that gluten intolerances are very serious as well but it important for him to know exactly what he is dealing with.

Thank you for your respsonses. I am really thinking of getting rid of all gluten in the house, from all i read it is not good for anyone. I dont think it would hurt my 4 other kids at all. But i know i need to find out exactly what is going on. It is just so hard cause we did have an appt on valentines day and the dr cancelled due to an death in his family, they kept saying they would reschedule, we finally called monday and they said he was full in march, and he cant be seen til april 14th now. And it seems so far away. We live in a small town and we have to drive at least 3-4 hours to get to a city with any good ped drs.

I also just got an email from his teacher at school, and she said he is back to himself this week, and she was so happy that he was no longer in pain. But she told me he has been buying candy at school, im waiitng to see what kind he has been eating. iF the teachers are seeing an difference, then im sure him going gluten-light, since he isnt completely gluten free is helping so much.

I am going to call the family dr here and see what she thinks, or if can get a hold of the ped gastro dr and see what he has to say on what we should do.. i just want him to be better and hate to give him tons of gluten til april.

paula

nora-n Rookie
...

His scores are as read

the range is 0-25

IgA was 12

IgG was 89

ttg was 3

Which IgA test was 12?

Which IgG test was 89?

Loks like the antigliadin tests.

There are two versions of the Ttg-test as well, the IgA version and the IgG version.

The endomysial antibody tests only will be positive if there is total villious atrophy. most people have patchy atrophy.

And the antigliadin tests are not so specific, but many people and some doctors mean they ar significant too.

Check out Dr. Ford's website, based on his personal experience and many patients' experience

www.doctorgluten.com

nora

rez Apprentice

I CANNOT STRESS ENOUGH HOW IMPORTANT IT IS TO FOLLOW UP WITH AN ENDOSCOPY IF THAT'S WHAT YOUR DOCTOR RECOMMENDS. OUR SON'S TTG WAS SLIGHTLY ELEVATED. IT SHOWS THAT THE SMALL INTESTINE IS DAMAGED, BUT YOU NEED TO FIND OUT WHAT THE CAUSE OF THE DAMAGE WAS. TTG IS NOT 100% SPECIFIC TO CELIAC. I FELT AS A PARENT, I OWED IT TO MY SON TO FIND HIM A PROPER DIAGNOSIS. THEY FOUND INFLAMMATION AND ABNORMAL MUCUSA IN HIS STOMACH. HE COULD HAVE A TOTALLY DIFFERENT CONDITION OR A CONDITION ON TOP OF HIS CELIAC. THE POINT IS...IF WE WOULD HAVE JUST WENT WITH THE POSITIVE TTG, WE NEVER WOULD HAVE KNOWN ABOUT THE OTHER CONDITION THAT WAS STILL CAUSING HIM PROBLEMS. HAVING HIM SCOPED WAS THE BEST THING WE EVER COULD HAVE DONE. WE HAVE AN EXCELLENT DOCTOR AND WE WILL FINALLY GET SOME ANSWERS. CROHN'S, H PYLORI/GASTRITIS AND CELIAC CAN ALL HAVE SIMILAR SYMPTOMS AND DO THE SAME DAMAGE. IT IS SOOOOO IMPORTANT TO LOOK IN THERE AND SEE WHAT'S GOING ON. I AM SO PASSIONATE TO HELP OTHERS NOT HAVE TO GO THROUGH WHAT WE DID. IF YOU GO ON A GLUTEN FREE DIET WITHOUT KNOWING FOR SURE, YOU AND YOUR CHILD WILL ALWAYS WONDER. PLUS, SOME DAY THAT CHILD WILL BE AN ADULT AND BE OUT ON HIS/HER OWN. THAT'S MY PERSONAL OPINION, BUT FEELING BETTER ON A GLUTEN FREE DIET IS DEFINITELY NOT SPECIFIC TO CELIAC. MY SON COULD HAVE A BACTERIAL INFECTION CAUSING HIS GASTRITIS AND WHEN YOU GO GLUTEN FREE YOU CUT OUT A LOT OF UNHEALTHY JUNK AND DEEP FRIED FOODS. IT'S SO IMPORTANT TO GET TO THE BOTTOM OF WHAT' REALLY HAPPENING. SORRY FOR THE LONG POST. GOOD LUCK. :)

confused Community Regular
Which IgA test was 12?

Which IgG test was 89?

Loks like the antigliadin tests.

There are two versions of the Ttg-test as well, the IgA version and the IgG version.

The endomysial antibody tests only will be positive if there is total villious atrophy. most people have patchy atrophy.

And the antigliadin tests are not so specific, but many people and some doctors mean they ar significant too.

Check out Dr. Ford's website, based on his personal experience and many patients' experience

www.doctorgluten.com

nora

yes they were the antigladin test, and for the ttg all is says is tissue. See i was thinking he could be negative for those cause he is only 13 and not enough damage has been done yet. And we never ate too much wheat until the last few months, even tho i know gluten is in so much more stuff.

I will check at that website, thank you very much

paula

chrissy Collaborator

The endomysial antibody tests only will be positive if there is total villious atrophy. most people have patchy atrophy.

this statement is not true. my daughter had a positive enomysial test and she showed no damage with her biopsy, just an area of increased intraepithelial lymphocytes.

happygirl Collaborator
. See i was thinking he could be negative for those cause he is only 13 and not enough damage has been done yet.

paula

I disagree about the age....it doesn't matter as much about the age as the amount of gluten being eaten and for the amount of time. Very young children can have serious damage. We are all equal opportunity damaged :)

He may be non-Celiac gluten intolerant.

nora-n Rookie
The endomysial antibody tests only will be positive if there is total villious atrophy. most people have patchy atrophy.

this statement is not true. my daughter had a positive enomysial test and she showed no damage with her biopsy, just an area of increased intraepithelial lymphocytes.

Interesting, as most of the abstrats say that it is almost always related to total vilious atrophy. I guess she is one of the wxceptions and we have to be reminded of them.

My daughter was very ill for many years and yet all tests and biopsies were negative, but she had been off gluten and then back on for the tests. she did get a diagnosis because of the symptoms and because she got sooo much better off gluten.

nora

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