4 replies to this topic

[kerid]

so we saw the pedi GI specialist today. i asked him to order the full celiac panel for my son and youngest daughter and he said no. that it wasn't necessary. he only wants to oder ttg IgG and ttg IgA. i said "but my son doesn't have the genetics for celiac, like my daughter does, but i want to know if he has anti-gliadin antibodies to see if he is gluten-sensitive". and he refuses to order the full celiac panel. ugh. comments?! am i right...

[mushroom]

Those are the two tests that most doctors think are the only tests necessary; some will only order the IgA tTG. They order these on the premise that those are the tests which will pick up damage in the small intestine (the anti-tissue transglutaminase) and this is their definition of celiac disease, that there must be damage to the intestinal lining. The total serum IgA is an important test because it is a control to see if he is a normal IgA producer; it is not quite so important if he is running the IgG version of the tTG as well because if he is not a normal IgA producer they run the IgG versions of the tests. Some, however, are low producers of both types of antibodies, which invalidates the testing. However, the new DGP test (both IgA and IgG versions if he is not running the total IgA) is a test very specific to celiac (the tTG can be elevated by things other than gluten) and it is very accurate, more so than tTG, in picking up celiac in children, specifically if the gut has not incurred much or any damage yet.

As far as gluten sensitivity, there is no blood test currently available which will measure this. In fact non-celiac gluten sensitivity has only recently been recognized as existing by the medical profession and researchers, let alone there being a test devised to measure it. They haven't really defined what it is yet The genetic testing can show what are labelled as gluten sensitivity genes (those associated with symptoms but not celiac diagnosis). However, in the rest of the world there are additional genes that have been associated with celiac other than the DQ2 and DQ8 genes recognized in USA, so if you are saying that your son doesn't have either of these and therefore doesn't have celiac that is not strictly accurate. There are posters on this board with diagnosed celiac who do not possess either DQ2 or DQ8.

So, in summary, we all produce IgA and IgG antibodies; the tests measure whether we are producing excessive amounts of these. People can test positive (and have celiac) while still testing negative on the tTG. Your doctor obviously does not subscribe to this. But I listened to Dr. Rodney Ford, a foremost pediatric celiac specialist, speak on the subject, and it is his belief that those children will eventually go on to develop full-blown intestinal damage if you let them eat gluten long enough, and the DGP is a kind of "head them off at the pass" test before too much damage and suffering occurs.

I hope I have clarified this a little for you. See if you can persuade him to at least run both versions of the DGP as well.

[kerid]

wow! thank you so much!!! i've never heard of the dcp test. must go look into this. i don't think it's part of the celiac panel that my pedi runs. darn! anyway, what are other causes of ttg igG being high? my oldest daughter has negative everything on the panel, but positive ttg IgG. since she has been very gluten-reduced for 3 years, and only ate gluten for 2-3 weeks before the test was run, the specialist wants her to to get retested for ttg igG in a couple weeks, so she would be on it for 2 months at that point. he said that if the test came back higher, she's almost certain to have celiac disease, but if it comes back the same or lower, then we still don't know. his opinion is that since we have the genetics for it, and she shows signs for gluten-sensitivty, she should just go gluten-free. i agree, but i also wanted the stool test done and he said no, that it's not necessary. i tried telling him that it's becoming the gold standard, that if we want to see what's going on in her intestines, we should look at her stool. he said no. i'm getting it done anyway, and payingout of pocket.

also, perhaps you, or someone else, can help me with a genetics question. my hubby is DQ8 heterozygous. me, and my 2 daughters are DQ2 heterozygous (HLA DQA1*05/DQB1*02). my son is "DQ2-, DQ8-" (which my doctor said that means he does not have DQ2 or DQ8). but on top of the paper it says "HLA DQA1*0201 detected". what is that allele?!

[mushroom]

wow! thank you so much!!! i've never heard of the dcp test. must go look into this. i don't think it's part of the celiac panel that my pedi runs. darn! anyway, what are other causes of ttg igG being high? my oldest daughter has negative everything on the panel, but positive ttg IgG. since she has been very gluten-reduced for 3 years, and only ate gluten for 2-3 weeks before the test was run, the specialist wants her to to get retested for ttg igG in a couple weeks, so she would be on it for 2 months at that point. he said that if the test came back higher, she's almost certain to have celiac disease, but if it comes back the same or lower, then we still don't know. his opinion is that since we have the genetics for it, and she shows signs for gluten-sensitivty, she should just go gluten-free. i agree, but i also wanted the stool test done and he said no, that it's not necessary. i tried telling him that it's becoming the gold standard, that if we want to see what's going on in her intestines, we should look at her stool. he said no. i'm getting it done anyway, and payingout of pocket.

also, perhaps you, or someone else, can help me with a genetics question. my hubby is DQ8 heterozygous. me, and my 2 daughters are DQ2 heterozygous (HLA DQA1*05/DQB1*02). my son is "DQ2-, DQ8-" (which my doctor said that means he does not have DQ2 or DQ8). but on top of the paper it says "HLA DQA1*0201 detected". what is that allele?!

From:

http://americanceliac.org/celiac-disease/diagnosis/

TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease.

It is also known to occur with dairy intolerance in the absence of celiac disease.

[kerid]

thank you SO much!!! and btw, she had a fasting/tolerance glucose test and she does not have diabetes.

dairy intolerance huh? so should i test her stool for dairy antibodies also? i was just going to do gluten. but will add in dairy if i get more answers to the puzzle.

you are SO much help to me... thank you so much!!!!