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Positive Blood Test, Neg Endoscopy Then Neg Blood Test

stretch69

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stretch69 Newbie
stretch69
Posted

Hi everyone,

I'm sorry if I'm bringing up something that's been asked a million times but...

About a month ago my sister was diagnosed celiac after a blood test then a positive biopsy.

She suggested I get tested because I have a lot of the typical symptoms. I was previously told by a doctor years ago I prob had IBS.

Anyway I went to the Dr and got the test which came back positive. I don't know the actual levels atm but the referal said my results were 'highly suggestive'.

I then had my endoscopy, straight after the procedure he said it didn't look like I had celiac disease. Got the biopsy results back and they were neg.

I asked the endoscopy specialist for another blood test and to test for the genes, he reluctantly agreed .

I rang today after they received the results from the pathologist,

He said they were neg.(gene results aren't back yet)

Okay now I just feel nuts, I don't know whether or not to go back to my GP and ask for another test and if there's even any point?

BTW I haven't changed my diet at all yet

Has this happened to anyone else?

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ksue12 Newbie
ksue12
Posted

Hi everyone,

I'm sorry if I'm bringing up something that's been asked a million times but...

About a month ago my sister was diagnosed celiac after a blood test then a positive biopsy.

She suggested I get tested because I have a lot of the typical symptoms. I was previously told by a doctor years ago I prob had IBS.

Anyway I went to the Dr and got the test which came back positive. I don't know the actual levels atm but the referal said my results were 'highly suggestive'.

I then had my endoscopy, straight after the procedure he said it didn't look like I had celiac disease. Got the biopsy results back and they were neg.

I asked the endoscopy specialist for another blood test and to test for the genes, he reluctantly agreed .

I rang today after they received the results from the pathologist,

He said they were neg.(gene results aren't back yet)

Okay now I just feel nuts, I don't know whether or not to go back to my GP and ask for another test and if there's even any point?

BTW I haven't changed my diet at all yet

Has this happened to anyone else?

Hi!  I am one that had a Deaminated Gliadin IgA at 42 (0-10).  The other usual blood tests were negative.  My biopsy was negative.  So I have no clue what that meant, but I went gluten free anyway.

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SMRI Collaborator
SMRI
Posted

A positive blood tests trumps a negative biopsy.  Depending on how the biopsy was taken, they might have just missed the damage--it happens frequently.  Look on line or call your dr and get the full results of your lab tests, including the lab ranges for normal.  I don't know that there is a need to go back to your GP, you have Celiac.  If your insurance covers it, meet with a nutritionist or dietitian if you need help getting started on a gluten-free diet, otherwise, read this board for more information than you can possibly digest :D.

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Cara in Boston Enthusiast
Cara in Boston
Posted

Since the blood test for Celiac is a series of tests, maybe you were positive on some, but not all.  Maybe the second lab did not do the full panel and therefore did not see the full picture.   Of the 5 tests commonly given, my son and I had opposite results.  Where he was negative, I was positive.  Where I was negative, he was positive.  We both have celiac disease.  If we had been given only one or two of the tests (many doctors don't do the full panel) we could have missed it.

 

He had ZERO gastro symptoms and a positive biopsy.  I had so very many of the classic symptoms and a negative biopsy.  He had a "low probability" of celiac disease based on his genetic test.  I didn't even bother with the genetic test.  

 

You have a positive blood test.  You have symptoms consistent with Celiac Disease.  You have a first degree relative with Celiac Disease.  You have Celiac Disease.

 

Damage can be easily missed by an endoscopy.

 

Your next "test" is to try the diet (100% . . . no cheating) to see if you feel better.  Give it 3 months before you decide.  Know that in the first few weeks you may feel worse (gluten withdrawal).  

 

You don't need a formal diagnosis to change your diet and start feeling better.

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