Daughter's Test Results - Confused (Ttg Igg Positive, Rest Normal)

[Questioning]

The doctor called yesterday to say my daughter tested positive for Celiac.  He is pushing for an endoscopy and basically said it was 50-50 on whether she had Celiac.  She is young and small so we researched this a bit to see what options we might have.  Well, I know a little bit more than I did, but not much more.    All of the different tests and interpretations are confusing.  That said, we are opting for a gene test before the endoscopy.  

In the meantime, can anyone with similar results shed some light?  

• Immonoglobulin A, Qn, Serum - Normal
• Deamidated Gliadin Abs, Iga - Normal
• Deamidated Gliadin Abs, Igg - Normal
• T-Transglutaminase (Ttg) Iga - Normal
• T-Transglutaminase (Ttg) Igg - 19 (Normal range is 0-5 for her age)

I appreciate any assistance you can provide.  

[frieze]

the gene test will not tell you if she has it or not, and will cost time and money.  if you need a hard and fast dx, go with the endoscopy.

[Questioning]

27 minutes ago, frieze said:

the gene test will not tell you if she has it or not, and will cost time and money.  if you need a hard and fast dx, go with the endoscopy.

Thank you for replying.

We understand that; however, from what I've read from Mayo Clinic, it is used as a tie-breaker (of sorts) between blood testing and an endoscopy (if the endoscopy is negative).  If her gene testing is negative, she will be spared the endoscopy.

My confusion lies in the results of her testing; her Ttg Iga was negative, which I understand can happen (as evidenced by threads on this forum), but the Deamidated Gliadin Abs testing was normal, too.  I understand one of the Deamidated tests is newer (DGP) and very sensitive and one is older; it's all very confusing.  

I know people must be tired of responding to similar questions.  But, it pertains to my child and it's maddening that doctors don't do more to HELP parents understand their specific results.  I've spent hours reading about this since we got the results and I'm not much closer to understanding what her results might mean, though we understand a false positive Ttg Igg result is unusual (sources siting 1-3% and up to 10%).

[emma6]

 i would ask for an EMA blood test at the same time that might provide some more information

what are her symptoms?

[Questioning]

On 10/5/2016 at 9:55 PM, emma6 said:

 i would ask for an EMA blood test at the same time that might provide some more information

what are her symptoms?

Well, that's exactly why I don't want the endoscopy until receiving results from the gene testing (which the doctor agreed to).  My son seems to have more symptoms than she does.  She has gastro issues (constipation, floating stool, mushy stool, gassy), but nothing has been severe; it is all intermittent.  However, she has had issues since birth.  She is a slow gainer and small, too.  Beyond that?   Nothing I can think of.  

Funny enough, my son has more symptoms from the research I've done - canker sores, tonsil stones, tooth discoloration (one tooth only so far), frequent heavy sneezing/stuffy nose (assumed allergies), growth stalled two years ago, etc.  He has zero gastro issues, though.  All of the "issues" make sense in isolation, but have made me wonder after doing some research.

Anyway, this is all just very frustrating to not know and not be told much.  From the research I've done, the Ttg Igg being positive means something.  Right? They checked T4, so he said it wasn't thyroid (which would have made sense as several direct relatives have Hashimotos).  

Edited October 7, 2016 by Questioning

[emma6]

12 hours ago, Questioning said:

Well, that's exactly why I don't want the endoscopy until receiving results from the gene testing (which the doctor agreed to).  My son seems to have more symptoms than she does.  She has gastro issues (constipation, floating stool, mushy stool, gassy), but nothing has been severe; it is all intermittent.  However, she has had issues since birth.  She is a slow gainer and small, too.  Beyond that?   Nothing I can think of.  

Funny enough, my son has more symptoms from the research I've done - canker sores, tonsil stones, tooth discoloration (one tooth only so far), frequent heavy sneezing/stuffy nose (assumed allergies), growth stalled two years ago, etc.  He has zero gastro issues, though.  All of the "issues" make sense in isolation, but have made me wonder after doing some research.

Anyway, this is all just very frustrating to not know and not be told much.  From the research I've done, the Ttg Igg being positive means something.  Right? They checked T4, so he said it wasn't thyroid (which would have made sense as several direct relatives have Hashimotos).  

yes i understand. i chose not to have an endoscopy as my blood result were extremely high, positive gene test and i have no Gastro symptoms. i personally don't think there is anything wrong with going gluten free first and then checking if blood tests nomalize as the pros of an edoscopy don't outweigh the cons for me but thats just me, everyone is different and there are alot of factors to consider.

you've probably read that there are a few other conditions which can give a false positive and elevate ttg like diabetes, liver disease, maybe you could try ruling those out as well

 

[Questioning]

UPDATE

I wanted to update for those who have this same question and are desperately hoping for answers.  Many threads ask the same question, but not everyone can or does follow up with the resolution, so I thought I would share this.

After this thread, she had gene testing (this was not that pricey; call around).  The results said NEGATIVE.  The gastro wanted us to do gluten free for three months and redo the original test.  We went gluten-free, a lot of her issues resolved, and we had the re-test done.  The numbers were still high.  

We went to our follow-up appointment where the doctor informed us that her gene testing had a caveat that he neglected to review the first time.  And, upon reviewing it and researching it, she does not test positive for the two main chains(?), but she does have an anomaly with her gene sequencing, which put her at risk for developing celiac (1% as opposed to 3%).  However, because it wasn't the two main beta chains (forgive me if I'm saying this incorrectly), the lab simply wrote the response as "NEGATIVE".  

The gastro said, with the family history of auto-immune disease, her positive testing, her good response to a gluten free diet, and her gene test results, she has celiac and we need to adopt a gluten-free lifestyle.

So, again, this isn't a question, but merely the end result of one person who had a positive TTG IGG.  I hope someone finds this information useful.

Edited January 25, 2017 by Questioning

[squirmingitch]

Thank you SO much for coming back to tell us the end story. This will help so many people in future. I am unbelievably happy that your doc re-looked at the gene testing results and saw the discrepancy, questioning what exactly went on with it.

It would help if you would post the docs contact info in the Doctors section of our forum. You never know when someone in your area will be needing a celiac savvy doc such as yours.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

[Missylulu83]

My daughter tested positive on only 1 test. Ttg igg and we just did the scope/ biopsy and biopsy confirmed celiac. Her doctor told us that they wouldn't find anything on scope because the ttg IGA was negative and the other tests was probably false positive. They were definitely wrong. She is finally feeling better after going gluten-free. I hope your daughter is doing better too.