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How Accurate Are Celiac Blood Tests


dek38

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dek38 Rookie

Hi there,

   I have been suffering from unresolved health issues for almost a year now, during which time I have lost around 20 pounds in weight.  All other things have been happening to my body, stomach pain, strange BM (Undigested food/oil droplets), strange urination, fatigue, reflux that is not helped by PPI's, tooth and gum problems, aches and pains, creaking joints to name a few.

I have had an extensive work-up regarding tests/scan (Endoscopy, Colonoscopy, Abdominal and pelvic CT and ultrasounds, chest x-rays, urine analysis, loads of bloodwork plus other tests.

I visited a GI on Saturday, and he mentioned Celiac, he told me that the blood test was only 80% accurate and wants to do another Endoscopy and biopsy to check for Celiac.

As anyone been diagnosed with Celiac who had a negative blood test?  Also do the symptoms I have been having sound familiar?

Any help and advise would be greatly appreciated.


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frieze Community Regular

it is possible to get a - result, maybe even more often than your doc quotes.....get the repeat endo and go gluten free.

kareng Grand Master

I'm assuming you have not been eating gluten-free?

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Deaminated Marcus Apprentice

page 12 of this report says a DGP-IgG blood test is 99 to 100 percent accurate.

 

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dek38 Rookie

I am not sure what Celiac test they ran on me.  It was last may and it just said Celiac on the bloodwork sheet.  

I was eating at the time of the test and still am eating Gluten.

My plan is to try a Gluten free diet after my Biopsy, to see if I get better.  My symptoms are so varied and weird that it as to be something Autoimune (I think).  The reason i think the GI mentioned Celiac is because of my BM's (Undigested food, fat etc..)

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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