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Possible Celiac, Negative Blood Test

kitty-el

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kitty-el Newbie
kitty-el
Posted

I'm wondering if anyone can offer advice. I have suffered stomach pains, severe bloating, furling stomach, wind, low iron, teeth grinding for as long as I can remember. I have a family history of celiac disease, I had a blood test in 2012 that came back negative so I just left it at that.

Over the past 6 months my symptoms have become much worse, I have headaches, brain fog, dry flaking skin, joint pain and difficult sleeping.

I was reading an article on celiacs and I literally have all the symptoms, I'm wondering if a blood test can be negative and what else I can do?

In the past I have done diets like Atkins so eliminating all gluten and my stomach problems disappear completely but I'm not sure if that's gluten or some other sensitivity.

Thank you

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zs1994 Newbie
zs1994
Posted

From what I've read, on rare occasions blood tests can be negative if you have Celiac. Best thing to do is to continue having gluten in your diet and then explain to your doctor about your symptoms and push for a biopsy! All the best :)

kareng Grand Master
kareng
Posted

Your blood test was 3 years ago.  It is possible to develop Celiac since then.

kitty-el Newbie
kitty-el
Posted
  • Author

Kareng, I didn't even think about that. I presumed if you had the blood test then that was that.

Thank you for your replies

Jeepasch Newbie
Jeepasch
Posted

There is a chance for false-negative with the blood test which is why doctors advise having the scope and biopsy done first. If the biopsy reveals there is gluten damage then the doctor will order the blood test to confirm celiac disease. If you decide to pursue a scope it is very important that you continue to eat gluten in order for the test to be accurate.

 

Good luck!!

psawyer Proficient
psawyer
Posted

Jeepasch, I think you have the process backwards. The blood tests are used for screening, and a positive result will likely cause the doctor to order the endoscopy for confirmation. Once damage has been confirmed by the biopsy, a diagnosis cane be made based on that alone. False negatives can occur with both the blood test and the endoscopy, particularly in children. And, yes, you must be eating gluten on a regular basis for either test to be accurate.

cyclinglady Grand Master
cyclinglady
Posted

Kitty, ask for the complete celiac blood panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I tested positive in just the DGP IGA and the rest were negative, yet biopsies revealed moderate to severe intestinal damage!

Welcome to the forum and let us know how it goes!

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Jeepasch Newbie
Jeepasch
Posted

psawyer, my gastroenterologist approaches the process this way. It could be that he encountered false-negative blood tests with other patients which led to problems. 

squirmingitch Veteran
squirmingitch
Posted

Kitty, if any of your relatives who have celiac are first degree relatives then you should be tested every 2 years or sooner if symptoms present and with you the symptoms are presenting. Be SURE to tell your doc you have celiac in the family. We can't stress enough that if you've been eating gluten free or gluten light then you will need to do a gluten challenge or risk false negative tests. 

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