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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Do I Or Don't I?


lpowmacback

Recommended Posts

lpowmacback Rookie

Hi guys - it's been a very long time since I've been here. While in the past I have been told I do not have celiac or a gluten sensitivity, I am back because I am now questioning what the doctors have told me- I've found some of you on here to be more knowledgeable about celiac & gluten issues  than some doctors - so I thought I'd throw you some information and you can tell me what you think. :)

 

Although I never seemed to have evident gluten sensitivity or celiac symptoms, in 2004 I was diagnosed with pretty bad  osteoporosis (I was 46, pre menopausal). Since I had no reason (other than I am 4'10.5") to have it, I went to an endocrinologist  who gave me a battery of tests. The only thing that came back questionable at the time was a

 

*  Gliandin AB IGG test:  22 (weak positive) 7/29/04

 

She suggested I might have a sensitivity to gluten and told me to go to NYC to see another endocrinologist for further testing. After that "weak positive," I put myself on a

 

*  started gluten free diet 8/25/04

 

I went to see Dr. Elizabeth Shane, an endocrinologist who gave me further testing and my initial tests came back negative 

 

*  Tissue Transglutam AB IGA- normal

   Gliadin AB (IGA) - normal

   Gliadin AB (IGG) - normal

   12/7/04 - on gluten free diet since 8/25/04

 

She then sent me for further testing:

 

*  Anti-Gliandin IgG ELISA (AGA IgG - normal

   Anti-Gliandin IgA ELISA (AGA IgA) - normal

   Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) - normal

   Anti-Endomysial IgA IFA (EMA IgA): Negative

   Total Serum IgA by Nephelometry (TOTAL IgA) 114 mg - normal

   12/22/04 - on a gluten free diet since 8/25/04

 

From what I remember, I gave up a gluten free diet a month or so after those tests, since I was told I had no problem with it.

 

Recently, I had blood work done - revisiting the possibility of celiac or gluten sensitivity - and all was normal except for a:

 

* Immunoglobulin A, Qn, Serum - 83 (low)

* >1999 (High) B12 (I had been taking 1050 mcg a day)

7/24/14

 

My doctor has taken more blood since then to check for IGG - which I have not received results of yet.

 

Over the years, my osteoporosis has gotten worse - except the test (a year or so after) 4-5 months off of gluten (hmmmm... could that mean something?)

 

Thanks for any light you can shed!!

 

Lisa

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

If you were not eating gluten when you had your lab work done, the tests are not accurate.

Link to comment
Share on other sites
lpowmacback Rookie

I was only not eating gluten when I had the tests in December - both came back negative. My only positives were weak - Gliandin AB IGG test:  22  (weak positive) 7/29/04 and very recently 7/24/14 and the most recent one which was only Immunoglobulin A, Qn, Serum - 83 (low).

Link to comment
Share on other sites
LauraTX Rising Star

As said, any antibody test while you were gluten-free is invalid.  Also, because you have low IgA, any IgA associated test will show potential false negatives for you.  It will be interesting to see what the IgG one comes back as, let us know!  

Link to comment
Share on other sites
lpowmacback Rookie

Why the heck did my doctor tell me that I did not have celiac then? Not that I definitely do - but to flat out say I didn't is kind of weird.She also said if the IgG test would just reveal that I would need to get some kind of monthly shot for my immune system... nothing about celiac.

Link to comment
Share on other sites
SMRI Collaborator

You need to see a celiac specialist. Sounds like they were testing you for immune deficientcy not celiac.

Link to comment
Share on other sites
cyclinglady Grand Master

Why the heck did my doctor tell me that I did not have celiac then? Not that I definitely do - but to flat out say I didn't is kind of weird.She also said if the IgG test would just reveal that I would need to get some kind of monthly shot for my immune system... nothing about celiac.

Some doctors can not get past the fact that some patients have symptoms that do not involve the intestinal tract! They just are not educated about celiac disease!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

Honestly, an endocrinologist is likely not going to be up to date with diagnostic criteria of Celiac disease as it is out of their specialty.  With a low IgA, if your other immunoglobulins are low, that would be a separate issue all together (an immunodeficiency, which I myself have and am on the IV replacement med).  If she didn't test for the ttg IgG, that was a mistake, as the ttg IgA is result is unreliable.  At this point it is pertinent to get yourself to a GI doctor who specializes in the proper diagnosis of Celiac disease so you stop getting the runaround.

 

If your total IgG level comes back low, DO NOT let that endocrinologist put you on the replacement med until you are properly evaluated by an immunologist.  I say this from experience and seeing many others who were incompletely diagnosed, because there are many more facets than just having low immunoglobulins.  Having low IgA alone is not that big of an issue, however you may still want to see an immunologist to be properly screened, even if it is just bringing them your lab results and them telling you that you are A-Okay.  If you need help finding an immunologist you can start here: Open Original Shared Link or with your insurance company.

Link to comment
Share on other sites
lpowmacback Rookie

Thank you so much for the info! I just found out my IgG came back within a normal range - I just put myself on a gluten free diet- because in 2004 I got a 22 (weak positive) in the Gliandin AB IGG test. The tests after that from Elizabeth Shane were taken when I'd been completely gluten free for at least 3 months.

 

Link to comment
Share on other sites
LauraTX Rising Star

Good to hear the IgG came back normal.  If you want to stop messing with it and just go gluten-free now, that is probably a good idea.  Just know that if you ever want an official diagnosis from a specialist in the future, you will have to go back on gluten.  Keep a food diary so you can go back and figure out any irregularities.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    2. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    3. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    4. - trents replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Julie Riordan posted a topic in Traveling with Celiac Disease
      2

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,488
    • Most Online (within 30 mins)
      7,748

    CandiceK
    Newest Member
    CandiceK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
    • trents
      There is such a thing, believe it or not, called gluten withdrawal. Gluten has addictive properties similar to opiates. I know it sounds bizarre but research it. Also, are you compensating for the loss of vitamins and minerals you were getting from the FDA mandated fortified wheat flour products you were formerly consuming?
    • Julie Riordan
      Just wondering can anyone help me out.heading on holidays and don’t really know what expect.if I get glutened are there tablets that you can take
×
×
  • Create New...