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Ttg Results....what Do I Make Of This?

bobtom

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bobtom Rookie
bobtom
Posted

Little background. My son, 11 years old, complain of stomach aches off and on since about beginning of year. Went to pediatrician and she ordered deamidated gliadin peptide IGA result 67 (<20). Referred to GI doc. Ordered total IGA which came back 184 (64-246) and TTG which came back <1. Didn't tell me range for that but can't get much lower than 1 so I guess it doesn't matter. Anyway, they say it definitely is NOT celiac. That's great, but why is the Gliadin so high? I asked if he could be in the early stages and not show up on his TTG, and they dismissed that idea. Said the gliadin sometimes shows up in people with other underlying conditions but didn't go into what that could mean. I'm not sure where to go from here. Take it as negative and move on, or continue to persue. I just don't want to miss something and then down the road they say it's celiac which was just too early to show up, which seems to be a common thread I have been reading. Any thoughts??

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mamaupupup Contributor
mamaupupup
Posted

Hi there,

About to head to get some sleep, but a quick note: there are a LOT of false negatives for the TTG. In fact, I never had a positive TTG (out of three times I tested) but I did do the endoscopy and clearly have damage to my sm intestine = a difinitive diagnosis for Celiac. Also, one of my daughters tested negative 2 out of 3 of her TTG tests (our other daughter was a very clear positive TTG). A positive TTG is a very accurate indicator of Celiac.

- Yes, I believe it's possible he could be in the beginning stages of Celiac. If this is the case, you might consider testing him annually to see if the TTG is triggered sometime in the not too distant future.

- I believe I had a low TTG because I had (over 40+ years) developed enough food aversions to effectively take myself off gluten inadvertantly and unknowingly (I avoided pasta, beer, pizza...). You may consider (heavily) gluten loading him for 3+ to 6 months and see if his TTG changes (this is how we triggered one daughter's TTG to a positive result).

All this said, I believe there is a lot to subjectively consider in looking at Celiac disease. Here is the list of things we considered as inputs for diagnosing our kids (and then me):

- Bloodwork (TTG, etc)

- Genetic testing

- Endoscopy

- Symptoms while eating gluten

- Easing of symptoms once off gluten (don't do this until you're done testing)

- Family history of Celiac, GI cancers, other related disorders etc.

Celiac can be easily definitive (in the case of one daughter with positive TTG, positive genetics, positive endoscopy, symptomatic, better off gluten) or more of an art (another daughter with eventual positive TTG, positive genetics, inconclusive endoscopy, symptomatic, better off gluten).

Hope this helps!

bobtom Rookie
bobtom
Posted
  • Author

Hi there,

About to head to get some sleep, but a quick note: there are a LOT of false negatives for the TTG. In fact, I never had a positive TTG (out of three times I tested) but I did do the endoscopy and clearly have damage to my sm intestine = a difinitive diagnosis for Celiac. Also, one of my daughters tested negative 2 out of 3 of her TTG tests (our other daughter was a very clear positive TTG). A positive TTG is a very accurate indicator of Celiac.

- Yes, I believe it's possible he could be in the beginning stages of Celiac. If this is the case, you might consider testing him annually to see if the TTG is triggered sometime in the not too distant future.

- I believe I had a low TTG because I had (over 40+ years) developed enough food aversions to effectively take myself off gluten inadvertantly and unknowingly (I avoided pasta, beer, pizza...). You may consider (heavily) gluten loading him for 3+ to 6 months and see if his TTG changes (this is how we triggered one daughter's TTG to a positive result).

All this said, I believe there is a lot to subjectively consider in looking at Celiac disease. Here is the list of things we considered as inputs for diagnosing our kids (and then me):

- Bloodwork (TTG, etc)

- Genetic testing

- Endoscopy

- Symptoms while eating gluten

- Easing of symptoms once off gluten (don't do this until you're done testing)

- Family history of Celiac, GI cancers, other related disorders etc.

Celiac can be easily definitive (in the case of one daughter with positive TTG, positive genetics, positive endoscopy, symptomatic, better off gluten) or more of an art (another daughter with eventual positive TTG, positive genetics, inconclusive endoscopy, symptomatic, better off gluten).

Hope this helps!

Thanks so much for the information. I am going to talk to the GI doc at more length about early stage celiac when we see him in November. I just think something must be going on if his gliadin IGA is high. Thanks again!!

MitziG Enthusiast
MitziG
Posted

Your doctors are not up to speed, clearly. Gliadin tests are specific for GLIADIN. Your son is making antibodies to gluten. He has celiac.

Ttg tests are frequently negative. Even ONE positive test out of the whole panel warrants follow up. Since they aren't going to dx him based on MY opinion (go figure) request a biopsy be done. I would also ask for an EMA blood test while you are at it. If the biopsy happens to be negative (which is still likely, especially in early stages) two positive bloods may be harder for them to deny.

Darn210 Enthusiast
Darn210
Posted

Little background. My son, 11 years old, complain of stomach aches off and on since about beginning of year. Went to pediatrician and she ordered deamidated gliadin peptide IGA result 67 (<20). Referred to GI doc. Ordered total IGA which came back 184 (64-246) and TTG which came back <1. Didn't tell me range for that but can't get much lower than 1 so I guess it doesn't matter. Anyway, they say it definitely is NOT celiac. That's great, but why is the Gliadin so high? I asked if he could be in the early stages and not show up on his TTG, and they dismissed that idea. Said the gliadin sometimes shows up in people with other underlying conditions but didn't go into what that could mean. I'm not sure where to go from here. Take it as negative and move on, or continue to persue. I just don't want to miss something and then down the road they say it's celiac which was just too early to show up, which seems to be a common thread I have been reading. Any thoughts??

My daughter was diagnosed before the newer deamidated tests were available. I'm not positive that I totally have my facts right so if I'm wrong, hopefully someone will come along and correct me. As it is, maybe it will give you enough info to do a little online research.

In the "old" tests (I'm only talking about five years ago), a high IgA didn't necessarily mean Celiac (although it could) . . . it did imply inflammation or "something" going on "somewhere". GI's did the tTG and EMA testing which was more indicative. In the last few years, they have come out with the deamidated version which is much more specific to Celiac than the old IgA testing. It looks to me that your pediatrician is more up to speed with current testing (ordering the deamidated test) than the GI...??? You might want to bounce a few questions off of the pediatrician and I would definitely research the deamidated form of testing to ask about during your next appointment with the GI.

My daughter's GI was open to using the response of a trial diet to help diagnose . . . not all GI's are . . . but it doesn't hurt to ask.

You can always try the diet on your own after completing any testing. Your son does need to be consuming gluten in order for the testing to have a chance at being accurate. I do recommend trying to get an official diagnosis as it is helpful in getting accommodations in the school environment.

frieze Community Regular
frieze
Posted

The performance of the peptide AGA assay was excellent, showing a specificity and sensitivity of 90% and 92% for IgA, and 98% and 75% for IgG, respectively.

The above info is from "clinic immulogy" 2007. Either your doc is behind, or way ahead and we havent seen the info yet. I am voting for the former. The ped should have ordered the the IgG version, which has even greater specificity, but lesser sensitivity.

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