Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Test Interpretation?

shihtzujane

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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).

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.