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GP tells me I have celiac disease, but test results don't really say that?

Barbmi
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Barbmi Newbie
Barbmi
Posted

I went to see my GP for chronic loose stools that I had for a few months.  I suspected parasites (not worms) due to some questionable food I ate.  He ordered testing for that, but also wanted to do a Celiac disease test as well.  I got the blood work done first (stool test results not in yet).  These are my results:

Endomysial IGA:  Negative   

T-Transglutaminase (Ttg) IGA:  <2 U/ml 

Iga:  54mg/dL

---------------------------

My Ttg is in the normal range and my Iga is a little low.  He said I tested positive for Celiac's Disease.  Apart from having low Iga (which I read that can lower due to stress, I've been under med to high stress for a few years now), I don't understand how he can say I have celiac disease.   I basically had to fight him to wait until the stool samples come back, but he's saying even if I have parasites, they wouldn't have affected the tests and I still have celiac disease anyway.  I'm not sure what to think...  

Do those results look like I have possible Celiac's disease and I need to see a specialist...?

 

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Barbmi said:

I went to see my GP for chronic loose stools that I had for a few months.  I suspected parasites (not worms) due to some questionable food I ate.  He ordered testing for that, but also wanted to do a Celiac disease test as well.  I got the blood work done first (stool test results not in yet).  These are my results:

Endomysial IGA:  Negative   

T-Transglutaminase (Ttg) IGA:  <2 U/ml 

Iga:  54mg/dL

---------------------------

My Ttg is in the normal range and my Iga is a little low.  He said I tested positive for Celiac's Disease.  Apart from having low Iga (which I read that can lower due to stress, I've been under med to high stress for a few years now), I don't understand how he can say I have celiac disease.   I basically had to fight him to wait until the stool samples come back, but he's saying even if I have parasites, they wouldn't have affected the tests and I still have celiac disease anyway.  I'm not sure what to think...  

Do those results look like I have possible Celiac's disease and I need to see a specialist...?

 

 

 

 

 

Welcome!  

What was the TTG IgA lab range?  I assume that your result was pretty low or below range.  Those tests seem to be negative and while you might be IgA (Immunoglobulin A) low, it is enough to validate the IgA tests.  A very low IgA test that would invalidate the IgA celiac tests (EMA, TTG, or DGP) would have to be close to zero.  

Did they run the DGP test?  Just curious.  I test positive to only the DGP IgA test and never to the TTG & EMA (I am biopsied confirmed).  

If your PCP suspects celiac disease, the next step would be to see a Gastroenterologist.  Did he advise that?  

I wish I could help more, but something is not right about your lab results and your doctor saying you have celiac disease.  

 

Barbmi Newbie
Barbmi
Posted
  • Author

This is what it says: 

Endomysial IGA:  My result: negative        Standard:  negative

                      Ttg: My result:  <2 U/mL       Standard:  0-3 U/mL, result negative

                      Iga: My result: 54 mg/dL       Standard: 87 - 352 mg/dL

I just don't understand how this says I *have* celiac disease.... 

cyclinglady Grand Master
cyclinglady
Posted

It does not.  But he did not order the complete panel, and about 10% of celiacs are seronegative.  What makes him think you have celiac disease?  Do you have risk factors like autoimmune thyroiditis, type 1 diabetes, anemia, a diagnosed family member?  

I would recommend a second opinion.  From what you described, your doctor is not celiac-savvy.  That would make me worry that he could be missing another illness.  

Barbmi Newbie
Barbmi
Posted
  • Author

No, I don't have any of those risk factors or anyone in the family with those.  He's a new doctor for me, first time I ever went to see him.  

If it turns out I don't have parasites (which might be causing the low Iga?!?) I think I'll do as you suggest and get a second opinion.

Thank you for your responses!

GFinDC Veteran
GFinDC
Posted

I agree, your results as stated don't suggest celiac disease, in my non-doctor opinion.  Perhaps the full celiac disease panel is a good idea as Cycles suggested.

You could try searching the doctors thread for idea on doctors to consult, or check Dr. Google for celiac in your area.  You may find a doctor that way.

It's possible your doctor didn't show you all your results or confused your results with someone else I guess.  Celiac is sometimes hard to get diagnosed and most people with celiac today don't know they have it.  It's good your doctor is open-minded enough to check for celiac.

cyclinglady Grand Master
cyclinglady
Posted

Your IgA is just below range.  It does not mean that you are IgA deficient.  

https://www.merckmanuals.com/professional/immunology-allergic-disorders/immunodeficiency-disorders/selective-iga-deficiency

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Barbmi Newbie
Barbmi
Posted
  • Author

I logged into Labcorp's website itself and saw that the doctor withheld a number from me. I was also tested for tTG IgG.  

t-Transglutaminase (tTG) IgG  < 2

t-Transglutaminase (tTG) IgA   < 2

IgA: 54 mg/dL  (standard range 87-352)

Endomysial Antibody IgA:  negative

My parasite results came back all negative, including salmonella.  

cyclinglady Grand Master
cyclinglady
Posted

You need to get another doctor.  You need to get another doctor.  I am serious.  A GP can help by screening you, but you should be referred to a Gastroenterologist (GI) for  a diagnosis.  

While is is common that some celiacs can be IgA deficient, not all are (like me).  I think it is about 10%.    The Immunoglobulin A (IgA) test is just used as a control test when it is ordered for celiac disease testing.   It does not diagnose celiac disease.  It just tells the doctor if the EMA IgA or the TTG IgA tests work.  

https://kidshealth.org/en/parents/test-iga.html

Obviously, you have GI problems, so get a referral to a GI who can diagnose you.  At the very least, consult with another GP.  

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