Celiac panel results extremely elevated-- need opinion on next step

[Emily W]

Hey guys,

I have had many years of inflammatory symptoms and have had every work up under the sun for autoimmune disease and all came back negative. Thankfully a naturopath thought to test me for celiac disease (despite not having GI symptoms, and now I know inflammatory symptoms are more common!). My blood results came back as this: 

IgA: 215 mg/dL

tTG-IGA: >150 units (reference <20 is negative)

Gliadin Deamidated Antibody IgA: 31.6 (<20 is negative).

 

Now, based on my limited knowledge of this disease those are some REALLY elevated results, and that there is only a 5% chance that there is another source causing elevated tTG-IGA. I have had every disease process listed online ruled out that could cause false-positives, including diabetes, RA, lupus, etc. 

 

Does anybody know if a small intestine biopsy is necessary in my case? It seems like a lot to do for a 5% chance that I could not have celiac disease, especially since we've ruled out so many other sources. What do you guys think?

 

-Emily

 

[cyclinglady]

1 hour ago, Emily W said:

Hey guys,

I have had many years of inflammatory symptoms and have had every work up under the sun for autoimmune disease and all came back negative. Thankfully a naturopath thought to test me for celiac disease (despite not having GI symptoms, and now I know inflammatory symptoms are more common!). My blood results came back as this: 

IgA: 215 mg/dL

tTG-IGA: >150 units (reference <20 is negative)

Gliadin Deamidated Antibody IgA: 31.6 (<20 is negative).

 

Now, based on my limited knowledge of this disease those are some REALLY elevated results, and that there is only a 5% chance that there is another source causing elevated tTG-IGA. I have had every disease process listed online ruled out that could cause false-positives, including diabetes, RA, lupus, etc. 

 

Does anybody know if a small intestine biopsy is necessary in my case? It seems like a lot to do for a 5% chance that I could not have celiac disease, especially since we've ruled out so many other sources. What do you guys think?

 

-Emily

 

The gold standard is still getting diagnosed via intestinal biopsies.  Every major celiac center in the US recommends it, the American GI Association, the British GI Association and the EU Association.  If you can afford to do it, then I would recommend it.  For me, it really confirmed my diagnosis and also helped me transition into the gluten free diet (no doubt).  It also ruled out SIBO, H. Pylori, and cancer.  It created a reference point for future biopsies.  

Some people have long wait times for an endoscopy, can not afford one, have no insurance, or may too severely ill to chance it.  Only you can decide what is best for you.  

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