Weak +Ve Ttg Anyone? - What Did Your Doctor Say?

[The Horticulturalist]

I posted a query previously in the forum section for kids with celiac forum here.

I called the Celiac Center at the University of Chicago a couple of days ago and they now have a faxed copy of his bloodwork, I'm waiting for a review by their doctor, it's hard to be patient!

These are the results for my 6yr old:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9 (range <4 negative,4-10 weak +ve,10 and above +ve.

here are my questions:

1) has anyone else had Ttg come back in this 'weak positive' range, and if yes, were you - or your child - referred for endoscopy?

2)If you had a 'weak positive' Ttg did you then go on to have a +ve endoscopy for celiac?

I know everyone's case will be different and my son's results could be quite different to yours, I'm just interested in your stories.

Thanks!

[pain*in*my*gut]

I posted a query previously in the forum section for kids with celiac forum here.

I called the Celiac Center at the University of Chicago a couple of days ago and they now have a faxed copy of his bloodwork, I'm waiting for a review by their doctor, it's hard to be patient!

These are the results for my 6yr old:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9 (range <4 negative,4-10 weak +ve,10 and above +ve.

here are my questions:

1) has anyone else had Ttg come back in this 'weak positive' range, and if yes, were you - or your child - referred for endoscopy?

2)If you had a 'weak positive' Ttg did you then go on to have a +ve endoscopy for celiac?

I know everyone's case will be different and my son's results could be quite different to yours, I'm just interested in your stories.

Thanks!

Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that the doc didn't order a more comprehensive panel.

Keep me posted on what U of Chicago says. I live in the suburbs of Chicago, and I am considering going there with my 6 year old for Celiac testing once I get my biopsy done.

[The Horticulturalist]

Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that the doc didn't order a more comprehensive panel.

Keep me posted on what U of Chicago says. I live in the suburbs of Chicago, and I am considering going there with my 6 year old for Celiac testing once I get my biopsy done.

I don't have a family history of celiac, I may need to get these additional bloods done. I'll see what the Chicago people say.

If I were closer to UOC then I'd absolutely take my son there, the more experienced the gastroenterologists are the better!

[pain*in*my*gut]

I don't have a family history of celiac, I may need to get these additional bloods done. I'll see what the Chicago people say.

If I were closer to UOC then I'd absolutely take my son there, the more experienced the gastroenterologists are the better!

Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? Oh, how I will miss dumplings.....

Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless about Celiac, and I don't want to mess around when it's my little guy's health at stake.

Keep me posted!

[The Horticulturalist]

Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? Oh, how I will miss dumplings.....

Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless about Celiac, and I don't want to mess around when it's my little guy's health at stake.

Keep me posted!

Absolutely. I've had the misfortune of having several tests that I now know were useless, but I only found that out recently, and I've been gluten free for a year so an endoscopy is probably not worthwhile for me,

If I need to get an endoscopy for my son then I'll be going out of my way to find someone with experience in diagnosing celiac in kids. My local gastroenterologists were pretty hopeless so I won't be going back there.

[October3]

I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he is the director of the GI program) said there was only a 15% chance that the endoscopy would show anything useful even with the elevated tTG. As it turned out, my son's biopsies were negative - no indication of anything at all on both endoscopy and colonoscopy. We were tentatively planning a colonoscopy anyway even before the blood tests came back because we were looking for a cause for his recurrent anemia. But with the elevated tTG the GI said the endoscopy was a must, the colonoscopy was optional. We opted for both.

[The Horticulturalist]

I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he is the director of the GI program) said there was only a 15% chance that the endoscopy would show anything useful even with the elevated tTG. As it turned out, my son's biopsies were negative - no indication of anything at all on both endoscopy and colonoscopy. We were tentatively planning a colonoscopy anyway even before the blood tests came back because we were looking for a cause for his recurrent anemia. But with the elevated tTG the GI said the endoscopy was a must, the colonoscopy was optional. We opted for both.

Thank you October for your reply. Do you have a family history of celiac? I do not, but several family members have other autoimmune disorders.

EDIT: update, just got an email from UofC Celiac Center, their doctor recommends an endoscopy for my son, based less on the weak positive and more on his symptoms (which I would say are very mild)

Will need to think about this some more.

[October3]

Thank you October for your reply. Do you have a family history of celiac? I do not, but several family members have other autoimmune disorders.

EDIT: update, just got an email from UofC Celiac Center, their doctor recommends an endoscopy for my son, based less on the weak positive and more on his symptoms (which I would say are very mild)

Will need to think about this some more.

We don't have a family history of celiac, but like you there are a variety of autoimmune issues.

If you go for the endoscopy and it shows a + for celiac then you have your answer. For me the drama of the scope prep was worth knowing for sure if he had full blown celiac. The hard part is when symptoms are mild and the scope is negative - what do you do with that? That's where we are now.

Edited to add that the scope prep was really drama mainly because we did the colonoscopy as well. The endoscopy by itself I don't think would have been any big deal at all and well worth the info it provided.

I'm curious about the U of Chicago hotline - did you just call their hotline number and they were willing to have a doc look over the results? I would LOVE a second opinion on whether to be gluten-free long-term without having to drive hours or pay hundreds of dollars for an out-of-network consult.

[The Horticulturalist]

I'm curious about the U of Chicago hotline - did you just call their hotline number and they were willing to have a doc look over the results? I would LOVE a second opinion on whether to be gluten-free long-term without having to drive hours or pay hundreds of dollars for an out-of-network consult.

October,

I called the hotline earlier this week, most of the time it rang out and there was an answering machine, I did manage to speak to someone early Tuesday and I briefly gave her my history and my sons and asked if they were able to review his blood work for me, which they were happy to do.

I faxed it to them Tuesday and waited, I got an email back yesterday (Friday).

So, yes, they should be willing to look at your son's records if you can fax/email them. I don't know if they will look at previously taken biopsy slides, that would require a GI pathologist and I'm not sure if they have one on staff at the Center, but I would certainly ask.

The lady I spoke to was very nice and sympathetic, you have nothing to lose by calling them.

Have a read of this article about biopsies, I found it a bit of an eye opener. Open Original Shared Link