+Igg, But -Iga?! Help!

[kerid]

Hi. i'm new here. lots of questions... please bear with me!

1. I'm gluten-free, as i was sick my whole life, nausous every single day, went gluten-free because i was nursing my 18mo, who i wanted gluten-free for neurological purposes, and i felt AMAZING!!! have eaten gluten here and there, and have always felt horrible, so gluten-free i am. got kids tested, and all 3 came up ttg IgG positive, but igA negative. the paper says that "celiac disease is unlikely when igA negative". and their total igA is normal (although on the saliva test, the oldest daughter had a ver depressed igA level, as in non-existant (<5, with reference being 25-60 normal, and 20-25 borderline), so how it came back normal in blood, idk...) pedi gi specialist appt jan 2nd. ***am wondering if anyone has ever heard of someone being ttg igG positive,but EVERY other test on a full celiac panel was negative!!! and still been celiac?***

2. hubby came out positive igA in the saliva test- which he refuses to admit is accurate. (18, with reference being borderline 13-15 and positive >15) i read somewhere that with that result, he has a 97% chance of having celiac disease. opinions?

btw, genetically, 2 girls and i are at high risk of celiac (dq2 heterozygous), hubby is moderate (dq8 heterozygous), and son is extremely low risk (dq2-,dq8-)

3. i had a 12 on the saliva test (with reference being borderline 13-15 and positive >15). this was after 3 years of being almost completely gluten-free. with cheating (a slice of pizza or half of bagel), maybe 1/month or every other month. for the 2 weeks before the test, i ate a slice of pizza, half a bagel, and 3 pieces of general tso chicken (breaded.). that's it. imo, if i ate only that amount, and i was only 1 point away from borderline, i would've probably been glaringly positive had i been eating gluten all along. ***opinions on that please!* several months ago, i ate a little gluten here and a little there, too many times, and all of my symptoms came back with a vengence. i was SO sick. so i went completely 100% gluten-free. i'm SO done with this! now i regret not getting tested when all of my symptoms were back, as i will NEVER do a gluten-challenge after feeling SO sick again! ugh...

any insight into anything i said would be greatly appreciated!!!!! thanks!!!

[shadowicewolf]

In terms of genetics, it really doesn't matter as long as you have the genes you have the chance of getting it. Granted i've heard that those with two copies of a gene have more severe reactions.

Low IGA can throw off the testing.

At this point in time, in terms of what you probably have with gluten, is either Celiac or NCGI. Both are similar to one another in reactions (in a sense that gluten is the culprit). Furthermore, you'd have to have a good gluten challenge to be dx'd any further than what you are.

As for the children, are they still on gluten? Do they have reactions?

As for the panel being negative, very possible. I've heard of cases where a person had all the blood tests negative and the biopsy is positive. Likewise, i only scored a positive on the IGA TTG and a negative biopsy (4 weeks gluten free however).

I've never heard of a saliva test. Send him in to get the blood test done to see if it corrosponds.

[Cara in Boston]

My son was negative on all IgA tests (but was not deficient) and positive on only the IgG tests. He had zero GI symptoms - his only symptom was an extreme and sudden change in behavior. The first doctor said he did NOT have celiac based on his blood test (and his genetic test said "low possibility" too.) When he couldn't explain the high IgG tests, we took him to the Celiac clinic at Children's Hospital Boston. They did an endoscopy and found extensive celiac damage. Once off gluten, he was back to normal and feeling great.

I got tested too and my IgA test were positive and IgG negative. My endoscopy was negative, but all my (many) symptoms went away within weeks of being gluten free.

The tests are confusing and unreliable. Plenty of people test negative on the IgA tests . . .THATS WHY THE GIVE THE WHOLE PANEL, to catch more people.

Cara

[kerid]

shadowicewolf~ kids eat very limited gluten, as the household is gluten-free, because i am, and i"m the cook! lol! i've also noticed meltdown-like behavior when kids eat too much gluten. my oldest daughter (10yo) got facial tics, that went away after she went gluten-free. after about a year, i let her slowly introduce gluten, and after months, tics came back. then went away after being gluten-free. i htink my son (8yo) gets volatile on gluten. and my littlest daughter (5yo) shows no symptoms yet. although i will say that i have them all eating gluten, as i want them all tested in january (and what a better time of year for a gluten-challenge?!), and lately my little girl has been saying that she "doesn't feel right; doesn't feel right in her head; feels like something's missing; feels like something's wrong", and i have a feeling that it's the gluten. we'll see. like is aid they ahve all been found to have igG in their blood. and my oldest was mostly gluten-free for 3 years, ate gluten for only 3 weeks before she got a positive on her igG! but on the whole, my kids can eat gluten, and i do not see any difference in them as far as tummy issues, rashes, etc. but with hubby and me being gluten-sensitve, and us both carrying the genes, i want to catch it in the kids, before it becomes a problem! (if i can!)

thanks so much and if anyone else has something to add, i'd really appreciate it!

Cara~ that is EXACTLY the thing i wanted to hear!!!! that it is possible! i do not want my children to have celiac disease... but if they do have it, then i WANT TO FIND OUT!!!!

[kerid]

My son was negative on all IgA tests (but was not deficient) and positive on only the IgG tests. He had zero GI symptoms - his only symptom was an extreme and sudden change in behavior. The first doctor said he did NOT have celiac based on his blood test (and his genetic test said "low possibility" too.) When he couldn't explain the high IgG tests, we took him to the Celiac clinic at Children's Hospital Boston. They did an endoscopy and found extensive celiac damage. Once off gluten, he was back to normal and feeling great.

I got tested too and my IgA test were positive and IgG negative. My endoscopy was negative, but all my (many) symptoms went away within weeks of being gluten free.

The tests are confusing and unreliable. Plenty of people test negative on the IgA tests . . .THATS WHY THE GIVE THE WHOLE PANEL, to catch more people.

Cara

this is what my daughter's paper says: "tissue transglutaminase (tTG) has been identified as the endomysial antigen. studies have demonstrated that endomysial igA antibodies have over a 99% specificity for gluten senstive enteropathy". so, what kind of igA did you have positive? because if it is ttg igA, then you most likely have celiac. no matter if they didn't find tissue damage... yet!