Is It Really Celiac?

[greece97]

I went in for a "routine" colonoscopy and happened to mention that I have heartburn regularly so the doctor suggested an upper endescopy as well.  She noticed some mild scalopping in the small intestine and took some biopsies. The path results came back "98% positive" for celiac.  I subsequently had bloodwork for celiac antibody--negative.  Now doc is sending me for genetic tests.  Meanwhile, vitamin B and D are very low.  I also suffer from strange rashes and fatigue.  I have no real gastro issues other than heartburn.  Is this really celiac?  Could it be something else? 

[psawyer]

I'm not the most conversant in the blood tests, but there are a number of different tests. Some are more prone to false results than others. Some people are IgA deficient, so if only an IgA test was run a false negative is possible. To check for that, a total serum IgA test is part of the full panel. If total serum IgA is below normal, no other IgA test will produce valid results.

 

Pathology of biopsies for celiac disease is diagnostic, and was the only tool available when I was diagnosed in 2000.  Blood testing is newer.

 

Could it possibly be caused by something else? Yes. Is there a reasonable likelihood? No. Some people have "silent celiac" where there is damage to the intestines, but no visible symptoms. It is just as important for them to follow the gluten-free diet.

[Lisa]

This is the FULL spectrum of serological tests you should have had,  They talk to each other, so to speak:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

With a positive biopsy and fatigue, vitamine deficiences and unexplained rash...  all  point to Celiac Disease.  The genetic testing will only tell you that you are in the 30% of the general population that MAY or May Not, at sometime in your life develope Celiac.  And yet, it's also a piece of a puzzle.

 

Beging the gluten free diet, is also diagnostic.  When all your testing is exausted, begin the diet and document you recovery.  But, I suspect, you are a member of the club already.     Welcome.