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Negative Blood Test But Visible Damage?


Eggs

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Eggs Rookie

Hi again! Just had some testing. Am a little confused and would appreciate input. 

My lab results were basically negative (deamidated gliadin abs, iga was one point above the reference range, everything else normal), but I had only been eating gluten again for 4 weeks after my doctor drew them after 2 months gluten free. He ordered a biopsy too because in addition to having symptoms that could be celiac disease I have Sjogren's so am at a higher risk. 

I haven't seen the doctor since I got the blood test results (I saw them online), but I just had the endoscopy Wednesday (after 7 weeks back on gluten). No biopsy results yet, but the doctor said he saw damage in my intestine consistent with celiac disease. But he didn't say I have celiac disease. Was he just covering his bases by refusing to commit or is there really a chance that the biopsy comes back negative? I'm worried that my uneventful blood work is going to cause a problem with the diagnosis. My GI told me he's had patients with on-the-fence biopsies and negative blood results who he decided didn't have celiac disease. Does anyone have any input? Can you have visible damage and a negative biopsy and negative blood work?

Thanks for any input!


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cyclinglady Grand Master

It can take time to build up antibodies in your blood.  That's why celiac experts recommend 8 to 12 weeks of consuming gluten prior to the blood draw.  I am sorry that your doctor did not follow the GI Association's (American, British or Canadian) protocol for celiac disease diagnostics.

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It is no wonder that your GI has patients "on the fence".  Perhaps, it is time to get another doctor or at least a second opinion from a more celiac-savvy GI?  

In any case, wait for the biopsies.  I know that it is hard to be patient.  Remember, villi damage can be attributed to many things besides celiac disease.  Without a positive blood test, it is hard to have a definitive diagnosis.  But....you can always test by going gluten-free for six months and gauge how you feel.  Not the best solution, but the bottom line is that you want your health to improve.  

squirmingitch Veteran

I'm quoting you:

 (deamidated gliadin abs, iga was one point above the reference range, everything else normal)

 

You had a positive blood test period! That one positive can not be ignored. A positive is a positive even if it isn't sky high. This is more significant in light of your having only been back on gluten for 4 weeks.

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