I'm So Confused ...

[Jualz]

Many of you here seem so knowledgeable about Celiac and test result evaluations.  The more I read the more I get confused.  If any of you can help me out I would great appreciate it.

 

I have two doctors.  One says I'm positive for Celiac and the other says I do not have Celiac. Both docs recognize my thyroid issue. 

 

Here are my test results (with ranges in parenthesis).  I'm going to type them like it is on my test results - sorry if some of it looks like a repeat.

 

tTG Antibody IgG   3.13  (<20)  - Result: Negative

 

Celiac Disease PNL, Adult W/ RFLX

- Celiac Disease PNL, Adult W/ REFLX

      ttg  Antibody, IgA    74.03H  (<20)  Result: Positive

 

 

Celiac Disease PNL, Adult W/ RFLX 

 - IgA       260    (81-463 mg/dL)    

 

   

Microsomal TPO-Ab   >1000H   (<35)  

Thyroglobulin Antibodies  986H (<41)

TSH: 10.6  (.45-4.50) 

 

 

Background:  I have congenital defect called Lymphatic Malformations in head and neck (basically malformed lymph nodes and channels in near my thyroid).  Diagnosed with Chronic Anemia three years ago (suspected blood loss from lymphatic malformation but not confirmed). My Anemia has been treated on a regular basis with Venofer (Iron Infusion IV's) which has solved that issue.  

 

Any help would be greatly appreciated.  I'm so confused as to why one doc would say I have Celiac and the other say I don't have it.  

[Mum in Norway]

acording to Open Original Shared Link site you have 'Open Original Shared Link celiac disease' with only ttg iga positive. With a positive testresult on eather one of the test you should have a biopsi done to be sure.

[GottaSki]

Were any of these tests run?

EMA-IgA

DGP-IgA and IgG

AGA-IgA and IgG

There is a strong association between Celiac and Hashimoto's Thyroiditis and other Throid issues.

The history of anemia also points to celiac disease.

I'd vote for making sure you have had a complete Celiac Antibody Panel along with nutriment blood testing. Once complete decide if you should have an endoscopic biopsy.

Complete all testing before removing gluten - once complete should things remain unclear - remove all sources of gluten for at least three months (six is better) to monitor symptoms along with Thyroid levels.

As to why the docs are disagreeing....many doctors will not diagnose via tTG and symptoms and require the biopsy for diagnosis.

[nvsmom]

With your history of Hashimoto's thyroiditis, and anemia (do you have other symptoms too?), I would err on the side of caution and say that you most likely have celiac disease. A positive tTG IgA is pretty specific to celiac disease well over 90% of the time but it can occassionally be caused by chronic liver disease, diabetes, crohn's or colitis, and thyroiditis BUT when that is the case the tTG IgA is usually barely positive - you are almost four times over the upper limit of the normal reference range... quite positive.

 

This reposrt (pages 10-12) has info on tests: Open Original Shared Link

 

That tTG IgA means that your body is attempting an attack on your intestines, usually it is because of celiac disease.

 

Like Lisa said, finish any testing before going gluten-free, but I think you should probably go gluten-free in the long run.  Best wishes.

[Jualz]

Were any of these tests run?

EMA-IgA

DGP-IgA and IgG

AGA-IgA and IgG

There is a strong association between Celiac and Hashimoto's Thyroiditis and other Throid issues.

The history of anemia also points to celiac disease.

I'd vote for making sure you have had a complete Celiac Antibody Panel along with nutriment blood testing. Once complete decide if you should have an endoscopic biopsy.

Complete all testing before removing gluten - once complete should things remain unclear - remove all sources of gluten for at least three months (six is better) to monitor symptoms along with Thyroid levels.

As to why the docs are disagreeing....many doctors will not diagnose via tTG and symptoms and require the biopsy for diagnosis.

 

My tests were completed by Sonora Quest Labs.  Here's what they said about the test I took.  

 

Method

This panel includes a test for tTG IgA antibodies (enzyme-linked immunosorbent assay [ELISA]) and total IgA concentration (immunoturbidometry). When the tTG IgA test is positive, an EMA IgA antibody test is performed (immunofluorescence assay); if positive, the EMA titer will be determined and reported. If the IgA concentration is low, a tTG IgG antibody test will be performed (ELISA). There is an additional charge, associated with an additional CPT code, for the latter 3 tests (EMA IgA, EMA titer, and tTG IgG)

 

Basically, I tested positive for the iTG antibody IgA  so they did the other tests -  which I was negative.   None of my docs want me to go through a biopsy.  They both said it wasn't needed (even both disagree on the Celiac diagnosis).

 

I have no other symptoms other than fatigue and pain from my lymphatic malfmormation tumors in my neck.   I can't remember the last time I had a stomach ache - 2 or 3 years ago was the last time I remember.  

 

Thank you so much for your help.  

[GottaSki]

My tests were completed by Sonora Quest Labs.  Here's what they said about the test I took.  

 

Method

This panel includes a test for tTG IgA antibodies (enzyme-linked immunosorbent assay [ELISA]) and total IgA concentration (immunoturbidometry). When the tTG IgA test is positive, an EMA IgA antibody test is performed (immunofluorescence assay); if positive, the EMA titer will be determined and reported. If the IgA concentration is low, a tTG IgG antibody test will be performed (ELISA). There is an additional charge, associated with an additional CPT code, for the latter 3 tests (EMA IgA, EMA titer, and tTG IgG)

 

Basically, I tested positive for the iTG antibody IgA  so they did the other tests -  which I was negative.   None of my docs want me to go through a biopsy.  They both said it wasn't needed (even both disagree on the Celiac diagnosis).

 

I have no other symptoms other than fatigue and pain from my lymphatic malfmormation tumors in my neck.   I can't remember the last time I had a stomach ache - 2 or 3 years ago was the last time I remember.  

 

Thank you so much for your help.  

 

Perhaps I am missing something, but I still don't see where you were tested for either Deamidated Gliadin Peptide (DGP) or Anti-Gliadin Antibody (AGA).  These should be run if they have not been.

 

Celiac Disease has over 300 associated symptoms...not everyone has digestive issues.

 

Open Original Shared Link

 

With the Thyroid, Anemia and strong positive tTG I'd still bet on Celiac Disease.  If you choose not to have an endo or any more tests -- it is time to remove ALL gluten.

 

Good luck to you

[nvsmom]

The EMA IgA tends to be positive in those who have fairly severe damage. Essentially the body realizes that damage has been done to the intestines so it sends in the EMA to wipe out the upper layer of the intestines in the hope of killing off whatever caused the first amount of damage (often tTGs).

My city's labs are like yours, they only offer the tTG IgA and then run the EMA if it is positive. If the do offer DGP testing, you might want to request it.

Best wishes.