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Negative Blood Test But Visible Damage?

Eggs

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Eggs Rookie
Eggs
Posted

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
cyclinglady
Posted

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
squirmingitch
Posted

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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