Why Just Ttg? Still Puzzled ...still Trying To Make Sense Of Things...

[MsCurious]

Hi again,

Sorry for posting so many questions... but I have so many questions, and this seems to be the best place to ask. I think it was CassP that said TTg is just one of the tests they do, but I was wondering, why would my doctor ONLY do that one and not the others? Just seems odd to me. Are they trying to save money and just "send me on my way" with a negative result?

The other thing is... sometimes (if I have a "good" day) I think maybe I'm just making more of this than I should. You know, justifying living with this for so long I guess. But I came across a symptom checker thing that scored answers based on gluten, fructose, lactose, yeast, and allergy indicators. I filled it out just for fun, and I wasn't surprised to see that gluten was way up there, but VERY surprised to see that yeast was almost as high and lactose was high as well. The gluten, I suspected obviously, and the lactose I knew about... but the yeast thing really surprised me. Allergy and Fructose were still higher than "normal but relatively low compared to the other three results.

This made me really curious. I thought, they probably skewed the questions so that the general population would score high on it, so I decided to find a comparison. My husband has no digestive issues EVER, but he does have allergies to dust, pet dander etc. I thought it would be interesting to have him take the same test. He scored a TOTAL of 4 on two columns and 1 each on the others. PFfffffft! That blew my theory that it was a skewed test. I was scoring 17, 15 and 16 on Gluten intolerance, Yeast sensitivity and Dairy Intolerance. This wasn's a "scientific" test, but probably a good indicator of the truth. Sometimes I feel like I must be just "normal" and I should just "live with it"... but then I KNOW this can't be normal. I remember ... feeling more normal than this years ago. So, long story short, I've decided I'm not crazy! Now if I could just get the doctors to tell me whats wrong!

[rosetapper23]

Forget the doctors....just go gluten free.

[cassP]

um okay- this symptom checker quiz sounds like fun- can you post the link?!??????

and as to why your doc only order the ttg... idk why? i see it a lot on here tho- many people going in for a test- but only one test

my PCP ran TTG iga & TTG igg, Antigliadin Iga & Igg, EMA, and total Iga serum. <- this is a pretty complete panel- and i was pretty shocked that she was so thorough.. cause she is still in that "box" u know. i had to BEG for her to test my Hashimoto's antibodies.. and when i tried to explain that i was NOT on the right medication (synthroid)- she wanted to put me on Antidepressants. so, ya- i was impressed with the full panel.

dont forget to post that quiz thing- i wanna do it

[MsCurious]

Can't remember how I came across this, but clicked on the video and got curious about the symptom checker thingy. I printed it out and took it, and had my husband take it too, as I said my numbers were sky high compared to his. This stuff is all free, BUT keep in mind they have a product (some food journal or something) they are trying to sell, so use an email you use for junk mail, cuz you will get spammed. That said, click at your own risk! LOL Open Original Shared Link

[ravenwoodglass]

Have you had your total IGA tested? If your low on that the IGA related tests would come out negative, that would be a reason not to do them.

[SaraKat]

The Rheumatologist that first tested me only ran the TTG and it was positive- I am guessing yours was negative? My GI Dr that did the endo also ran the full celiac panel and 4/5 tests were positive. I have heard that the TTG is one of the most sensitive tests, so maybe that is why they just ran that one.

[MsCurious]

Have you had your total IGA tested? If your low on that the IGA related tests would come out negative, that would be a reason not to do them.

Hi Raven,

Nope, the only tests he ran were the TTG and the DQ2 and DQ8 test, but I've noticed while reading on here, that lots of people that had negative TTG had positive DGP, which he didn't run ... so it makes me curious. Also, the DQ2 and DQ8 are apparently directly related to celiac, but their are so many unknowns even to the experts at this point that what ever my DQ's end up to be, they could be related to NCGS... and I'm thinking that's a strong possibility. I think research and testing just hasn't caught up to the actual issues and sensitivities that people have developed over the years... probably from genetic altering of gluten. I read somewhere that wheat (along with practically everything else that's grown) has been genetically altered to create "super gluten" which is NOT the same as the gluten people were eating 50+ years ago, and that humans can't handle the proteins in it, which is why doctors are seeing an explosion of celiac and gluten related sensitivities. The Mayo lecture I saw said it is four times as common now as it used to be.

I should post the link if I can find it. REALLY interesting info. Here it is! This is a MAYO CLINIC Video HotTopic lecture, specifically directed to other physicians, not the general population. Open Original Shared Link Be careful in watching this video and trying to understand it without medical knowledge. I misunderstood when I first saw this and confused the TTG with Gliadin IGA and Gliadin IGG tests. The second two (not the TTG) have been replaced with DGP, as it is a newer and better test, if I'm understanding the video correctly. I had to watch it a couple of times and read lots of other things to understand the differences in the test names, etc. And truthfully, they're still confusing to me sometimes. Enjoy!

Oh, there is another lecture video where Dr Murray and a pediatritian and a nutritionist/dietitian expert all speak. I'll try to find that link, too.

[October3]

I've wondered the same thing about the TTG. My son's doctor only ordered the TTG, and then when I called and asked for a full celiac panel they said sure and sent me the lab req and the only thing on it is the TTG again. So they must think highly of that test - LOL. I've reasoned though, that the IGA which is basically a test to make sure the immune system is working well isn't necessary since he tested positive on the TTG. And the others (antigliadin IgG and antigliadin IgA) are not as sensitive or specific as the TTG, so if the TTG is positive then maybe those other less reliable tests are unnecessary. And the EMA is supposed to be very accurate if done correctly but subject to human error in the lab. So I guess if you had to choose only 1 test (and in today's world of skyrocketing health care costs everyone is trying to find ways to save a little $) the TTG is the one to choose. If it is negative then you may want to dig deeper, but if it is positive I guess the others aren't so necessary. This is my speculation based on all the reading I've been doing, so take it for what it is worth. The part that doesn't add up for me is the doctor, after seeing my son's positive TTG, thought he only had a 10-15% chance of having a positive scope. But from my reading the sensitivity and specificity of the TTG is in the high 90's. So I must still be missing something.

[mushroom]

I posted this in another thread, taken from a medical study:

Open Original Shared Link

What a radical idea!!!

Several studies have recently demonstrated the cost-effectiveness of screening the IBS population for celiac disease. Results from one recent study addressed the possibility of immunologically-based mechanisms following gluten exposure contributing to IBS symptoms that may represent a