Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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?

Link to comment
Share on other sites
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?  

Link to comment
Share on other sites
shihtzujane Newbie
shihtzujane
  • Author
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
shihtzujane Newbie
shihtzujane
  • Author
Posted

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. 

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shihtzujane Newbie
shihtzujane
  • Author
Posted

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. 

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
shihtzujane Newbie
shihtzujane
  • Author
Posted

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?

Link to comment
Share on other sites
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).

Link to comment
Share on other sites

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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...