SO confused by my gene test results!! Can anyone help me please??

[MissMom03]

I tested positive on my TTG IGG test (after being gluten free for almost a year and only trying to eat a little bit of gluten for a couple of days.)  The other antibody tests were negative, which we expected since I was gluten free for so long.  My endoscopy showed inflammation of my small intestine, but not villi problems.  I have had the crazy symptoms most of my life, diarrhea, constipation, nausea, vomiting, canker sores, migraines, on and on and on.  Brother passed away from colon cancer (he also had ulcerative colitis), other family members have celiac, ulcerative colitis, one passed recently from non-Hodgkins lymphoma.

 

I just got my celiac genetic testing in.  Here are the results (which I dont understand what all the numbers mean?)

HLA DQB1  603

HLA DQB1  301

HLA DQA1  3

HLA DQA1  1

HLA DQ8 Neg

HLA DQ2 Neg

So it looks like my genetic testing is saying no to celiac, correct?  I dont understand the ones with the numbers?  I'm so confused, especially as to why I have a positive antibody test with only eating a little gluten?  Maybe NCGS?  Any help greatly appreciated!  Thank you!

[kareng]

Was it very high?  It's possible something besides Celiac caused it to be elevated.

 

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"tTG normalizes slowly when on a strict gluten-free diet. This process may take years if the starting level is very high. If tTG is still high after a long time, aside from gluten sneaking into one’s diet, this may simply mean, especially with low titers, that it’s falsely elevated—common in patients who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis. April, 2013"

 

[kareng]

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"We rule out other causes of elevated tTG by evaluating the other known possible causes, such as liver diseases or the concomitant presence of other autoimmune disorders. January, 2013"

 

[MissMom03]

No, it was not extremely highly elevated. Doctor said probably because I had been off of gluten for so long before getting the bloodwork done.  My endoscopy biopsies said no to Crohns and colitis, so those are both out of the question I think.  My liver numbers are good?  My thyroid numbers are good.  When I take gluten out of my diet, no more canker sores, stomach ailments, migraines, etc.  

Would Non Celiac Gluten Sensitivity cause a high TTG IGG? 

[cyclinglady]

First, I know NOTHING about gene testing.  I never even had it done because my blood test and biopsy were positive.  But I did come across this:

 

 

Interpretive Information

Negative results for both HLA-DQ2 and HLA-DQ8 virtually exclude the diagnosis of celiac disease and indicate an extremely low risk for subsequent development of the disease (≥95% negative predictive value).4,5 In rare cases, however, when DQ2 and DQ8 heterodimers are negative, the presence of 1 of the DQ2 alleles (eg, either DQA1*05 or DQB1*02) is consistent with a diagnosis of celiac disease.3 A positive DQ2 or DQ8 result, in conjunction with equivocal histopathology and/or serology test results, is consistent with a celiac disease diagnosis.5 Positive results, however, are not diagnostic as 25% to 40% of the U.S. population have positive results. In high-risk individuals, positive DQ2 or DQ8 results reflect an increased likelihood for development of celiac disease, and periodic screening should be considered.6 DQB1*0201 results may reflect the severity of disease. Although data are conflicting, homozygosity for this allele has been associated with having more severe villous atrophy, a slower rate of villous recovery once a gluten-free diet has been instituted, and developing celiac disease at a younger age.7   Well, I got to cut and paste the above.  The source is Quest Diagnostics.  The website is freaking out and I can not copy links from my iPad.  My laptop is being used for an English assignment.  Anyway I better submit this before it all goes away!  More later!

[frieze]

perhaps it is something else in wheat that is bothering you, there are other proteins.

[kareng]

9 hours ago, MissMom03 said:

No, it was not extremely highly elevated. Doctor said probably because I had been off of gluten for so long before getting the bloodwork done.  My endoscopy biopsies said no to Crohns and colitis, so those are both out of the question I think.  My liver numbers are good?  My thyroid numbers are good.  When I take gluten out of my diet, no more canker sores, stomach ailments, migraines, etc.  

Would Non Celiac Gluten Sensitivity cause a high TTG IGG? 

No. NCGS would not raise your tTg.  

Sounds like you endoscopy was negative for Celiac, also?  

[MissMom03]

1 hour ago, kareng said:

No. NCGS would not raise your tTg.  

Sounds like you endoscopy was negative for Celiac, also?  

I wasn't eating gluten when I had the endoscopy.  Well, they told me to, but when I tried, my stomach bloated so painfully, I ended up with a mouthful of canker sores, nauseated and vomiting, diarrhea, etc.  So they said going in, they didnt think they would find any issues with the villi.  So it was negative for Celiac.  But they did find inflammation in the small intestine? 

 

2 hours ago, frieze said:

perhaps it is something else in wheat that is bothering you, there are other proteins.

I'm so new to this!  Would that cause my TTG IGG to be elevated?  I want to make sure I'm avoiding whatever the heck it is I need to avoid!