Do I Or Don't I?

[lpowmacback]

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

 

 

[SMRI]

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

[lpowmacback]

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).

[LauraTX]

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!  

[lpowmacback]

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.

[SMRI]

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

[cyclinglady]

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!

[LauraTX]

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.

[lpowmacback]

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.

 

[LauraTX]

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.