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Test Interpretation?

shihtzujane

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shihtzujane Newbie
shihtzujane
Posted

Just got genetic testing fm Mayo.  Allergy blood tests done yrs ago showed I was allergic to glutens, so I went gluten-free then.  After that, osteporosis doc was looking for why I got osteoporosis at an early age, he found antibodies.  GI doc did endoscopy, which was okay, he said maybe b/c I had been gluten-free so long (although he had me start on gluten about 6 weeks prior to the test).  My niece was just diagnosed 6 months ago.  New GI dr. ran following...  DQ Alpha 1  01:02, 05:01    DQ Alpha 2  02:01, 06:02  Celiac gene pairs present?  Yes.  I'm thinking these are postive results, right?

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SMRI Collaborator
SMRI
Posted

Gene testing just means you have the genetic make up for Celiacs but it does not mean you have celiac for sure.  Are they going to do bloodwork for the actual Celiac testing since you went back on Gluten?  

shihtzujane Newbie
shihtzujane
Posted
  • Author

I'm not sure what you mean.  I haven't gone back on gluten.  The blood tests before showed the antibodies, the GI dr. didn't feel it was necessary to repeat those tests.

kareng Grand Master
kareng
Posted

If you had a positive celiac test before, you have Celiac. If you had allergy testing, you did not test for Celiac. This may just be a confusion of word usage? I am not sure why you would be re- tested for Celiac if you were tested for it before.

Edit : your dogs are adorable!

shihtzujane Newbie
shihtzujane
Posted
  • Author

I've had three forms of blood tests that relate to gluten.  Years ago, glutens tested positive when I had allergy blood testing.  Then, a couple of years after that, when my gyn was running blood tests, looking for possible reasons for my early-onset osteoporosis, the one test that was positive was one that showed antibodies for celiac.  Then, I had this latest genetic testing which I can't interpret the results of. 

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

For genetic tests that place one in the high risk group for celiac disease are the DQ2 and DQ8 genes.  It looks like you have the DQ2 gene which means you are one of the 30% of the world's population who is at an increased risk of having celiac disease.  I think it is somewhere around 97% of all celiacs have the DQ2 or DQ8 genes.

 

I'm not sure why the doctor ran the genetic test for celiac disease on you since you said you positively tested for the autoantibodies found in celiacs - usually the tissue transglutaminase, endomysial antibodies, or the deaminated gliadin peptides tests. If one of those is positive, you have a gluten sensitivity that took the form of celiac disease, which is an autoimmune disesse that can run in families.  There is not any real need to do the genetic tests if one of those is positive. Even if the endoscopic biopsy is negative (intestinal damage is missed in up to 20% of celiacs) you still have celiac disease.

 

Medically speaking, there is not actually an allergy to gluten.  People can have a sensitivity to gluten, or they can be allergic to things that contain gluten like wheat, but a gluten allergy does not really exist.  An allergy is an IgE reaction and gluten doesn't cause that.

 

And kudos to your doctor for thinking of celiac disease when you presented with early osteoarthritis.  Not many doctors would have made that connection.

Solandra Rookie
Solandra
Posted

I would say you have Celiac by the test results, the genes, and the fact that you developed Osteoporosis early. 6 weeks of gluten prior to an endoscopy isn't enough.. They usually have you shoot for 12, so that's probably why they didn't see any damage. I'd keep going gluten free if I were you.

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shihtzujane Newbie
shihtzujane
Posted
  • Author

Thanks, everyone.  And, interestingly (and maybe why my newish GI ran the genetic testing), my 21-year-old niece was just diagnosed with celiac a few months ago. 

SMRI Collaborator
SMRI
Posted

I'm not sure what you mean.  I haven't gone back on gluten.  The blood tests before showed the antibodies, the GI dr. didn't feel it was necessary to repeat those tests.

 

You said in your first post that your GI had you go back on Gluten 6 weeks before your scope.  We would have to see your actual tests and results to give you better answers but like other's have said, the allergy testing is not Celiac testing.  Can you get your results from before?

cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Wow, what are you doing for the Osteoporosis? If you were gluten free for all those years, how did the osteoporosis develop? Perhaps, you were not as gluten free as you thought. Cross contamination is a big issue. I highly recommend reading our Newbie 101 section under the "Coping" section of this forum.

Here is the link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Take care!

shihtzujane Newbie
shihtzujane
Posted
  • Author

You said in your first post that your GI had you go back on Gluten 6 weeks before your scope.  We would have to see your actual tests and results to give you better answers but like other's have said, the allergy testing is not Celiac testing.  Can you get your results from before? 

Do you mean the test the gynecologist ran?

kareng Grand Master
kareng
Posted

Just got genetic testing fm Mayo.  Allergy blood tests done yrs ago showed I was allergic to glutens, so I went gluten-free then.  After that, osteporosis doc was looking for why I got osteoporosis at an early age, he found antibodies.  GI doc did endoscopy, which was okay, he said maybe b/c I had been gluten-free so long (although he had me start on gluten about 6 weeks prior to the test).  My niece was just diagnosed 6 months ago.  New GI dr. ran following...  DQ Alpha 1  01:02, 05:01    DQ Alpha 2  02:01, 06:02  Celiac gene pairs present?  Yes.  I'm thinking these are postive results, right?

 

 

Do you mean the test the gynecologist ran?

 

 

I am getting confused.  Maybe start over?  Why would the GI put you on a gluten challenge if you were diagnosed years ago?  Did he run any blood work after you were eating gluten?  If you had been gluten free for years - the Celiac blood work shouldn't have been positive (the one the OB?GYN ran?).  

 

 

You may want to get a copy of all your medical records to see if you were actually tested for Celiac or not.  It sounds like you probably have it but a genetic test only tells you that you are 1 of the 30% of people with a gene that could be activated at some time (but for most, will not be activated as only about 1% of the population have Celiac Disease).

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    • trents
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