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kellington79

Need Help Understanding Specifics Of Genetic And Iga/igg Tests

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Hi there! I'm new here and I could really use some help understanding my combination of tests and family history. I had the following results from genetic and antibody tests.
 
HLA DQ alleles detected
DQA1*01:DVB, 03:MN
DQB1*03:02, 06:FXNA
 
 
DQA1*05:01/05:05 NEGATIVE
DQB1*02:01/02:02 NEGATIVE
NEGATIVE for DQ2
 
DQA1*03:XX POSITIVE, one copy
DQB1*03:02 POSITIVE, one copy
POSITIVE for DQ8
 
My IgA/IgG tests were negative, though I do have somewhat low Serum IgA.
 
Deamidated Gliadin Abs, IgA 2
Deamidated Gliadin Abs, IgG 2
t−Transglutaminase (tTG) IgA <2
t−Transglutaminase (tTG) IgG <2
Endomysial Antibody IgA Negative
Immunoglobulin A, Qn, Serum 66 Low mg/dL (normal 91 − 414)
 
Labcorp gives my risk as 1:89. However, I am the birthmother to two daughters both positive biopsy diagnosed with celiac disease and also have a second degree relative with gluten sensitivity (my maternal uncle). And I seem to remember that U of Chicago gives me a lifetime risk of developing celiac disease of 1:22 given my positive genetic test and having first degree relatives who are positively diagnosed. Does this seem right?
 
I am currently symptomatic and suggestive of gluten sensitivity, however a biopsy in 2009 indicated no evidence of villous atrophy in my small intestine, and blood testing at that time was negative, but I don't have specifics of my tests from then. Given my family history and symptoms, my new doc wants to do another biopsy with increased number of samples, which is scheduled for Thursday.
 
If it helps, I am mid-30s, female, caucasian, from the US of English/Northern European ancestry, without known American Indians or Latinos in my family history (which I understand is the reason for DQ8 being higher in the US).
 
Is there anything about this that jumps out at anyone? I've read it's possible to be IgG deficient also if serum IgA is low. Should I ask to have my IgG types tested? Does the 1:22 risk sound off given all the variables? Is there benefit with this level of risk of going gluten free pre-emptively to prevent developing celiac disease or another related autoimmune disease? Is DQB1 06:FXNA a rare allele of DQ6 or am I reading the results wrong?  Is there anything I haven't thought of?
 
Thanks so much for any help you all can offer!
 
Kate
 
(Edited to highlight that I am currently symptomatic. My GI history includes severe gastritis (the only finding from previous EGD), and a diagnosis of IBS about a decade ago. My current symptoms are stomach pain after eating, fatty foul smelling stools, alternating constipation/diarhea, sometimes pale stool but usually not, GAS GAS GAS, unfocused abdominal pain and bloating, exhaustion, joint and muscle pain, depression, and a history of iron-deficiency anemia and Vit D deficiency.)

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Seems like you have had the celiac blood panel.

As of right now, if you have no symptoms, just keep an eye on it through yearly blood tests.

A good portion of the population of the US, about 30%, have the gene(s). Many do not develop it, but some do.

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 Since you are symptomatic go ahead and start the diet as soon as your testing is finished. Just because results were negative in 2009 doesn't mean they will be now.  You may be feeling better before you even go back for the test results but it can take time for some problems to go away. Welcome to the board and ask any questions you need to.

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Welcome to the board.  :)

 

You had a really comprehensive test panel run - that's great. Not many doctors or labs run all of those.

 

As you said, you have a low IgA, so that means that any IgA celiac test is basically invalid; you should probably ignore your tTG IgA, DGP IgA, and EMA IgA. I've been around here for about a year and a half and I only remember one person who had a low IgA test result yet still managed to get a (low) positive tTG IgA test. Just one.  

 

About 5% of celiacs are low in IgA; you are the minority. Low IgG is not common in celiacs like low IgA is, but I agree that it might be worth checking... You never know.

 

There is a chance that you have non-celiac gluten intolerance (NCGI) which has all the same symptoms of celiac disease minus the villi damage so all blood tests and biopsies are negative. The best way to diagnose NCGI is a positive response to the gluten-free diet, although some believe the AGA IgG test (for gliadin sensitivity) works for both celiac disease and NCGI.

 

NCGI can be found in families of celiacs too, I am a celiac yet my gluten sensitive kids all tested negative. Either the tests failed or they are NCGI - the treatment is the same though so our house hold is now gluten-free.  :)

 

Good luck with the biopsy!

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