Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood Test Result Statistics - Place A Vote, Make A Difference!

Oats

How common are false negatives?  

21 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

Oats Newbie
Oats
Posted

So many people are wondering how common false negative blood tests for celiac disease are - or to be precise - what the chances are of having celiac disease or non-celiac gluten sensitivity if your doctor tell you that you can go ahead and eat gluten.

If you know you are gluten sensitive - PLEASE VOTE, whether your blood tests straight forward told you you were POSITIVE for Celiac, or they falsely showed up NEGATIVE, and you had find out for yourself that gluten was the culprit. It could make a great difference for someone suffering like you probably have suffered - perhaps for several years!

Off course - this poll will still overlook all the unknowing celiacs out there, mislead by blood tests - who probably stand for the greatest percentage of false negatives.

To make it simple, I only added two alternatives. This is to clearly show the proportions between positives and false negatives.

Thank you for your vote!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

Yeah, negative for me. If I eat gluten I end up with a life threatening condition that has me in ER. So deffo problem with gluten.

Interestingly - I also have other autoimmune conditions which they can't figure out - and my bloods are always negative for those things as well...some kind of connection perhaps?

stanleymonkey Explorer
stanleymonkey
Posted

our daughter had positive gene test but everything else was negative, the GI at the children's hospital said that meant she had absolutely no issue with gluten and her tummy problems and rashes were nerve damage, we went gluten free and all her issues disappeared

Roda Rising Star
Roda
Posted

My IgA tTG was positive. I didn't know about the other tests at the time. I had a positive biopsy, but my GI said I had a "choice" to either go gluten free and follow up in 6 months or continue eating gluten and repeat the blood work in three months. WTF? I went gluten free...DUH that was a no brainer given my test results.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I tested negative to Celiac, but my endoscope showed severe villi flattening and a duodenal ulcer. I was DXed based on that.

Since going gluten-free I've found that I'm hyper sensitive to soy. I've read that soy can cause villi flattenng too, so it has me wondering if my problem is really soy, with a gluten intolerance due to damage in the intestine? A re-scope now that I'm at the 6 months gluten-free stage revealed moderate to severe villi flattening. My health has not improved gluten-free.

I didn't remove every trace of soy until Nov 19. I found it as tocopherol in vitamin supplements, in fish oil supplements, vitamin D supplements. I had only been looking at foods with soy ingredients.

I'm curious if anyone else that tested negative has a secondary intolerance to dairy, soy, or lectins in general? From my reading I find these other things can cause villi flattening and might be mimicking Celiac?

Skylark Collaborator
Skylark
Posted

I was never tested but I'm voting for my mom. She was tested and scoped, both negative. She is DQ2 and definitely gluten-sensitive.

cahill Collaborator
cahill
Posted

My blood test was negative, my only endoscopy was 16 months after I was gluten free .

I was diagnosed with celiac because: I had a positive DH biopsy, tested positive for Hashimotos and most of my symptoms responded to a gluten free diet .

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

Geez- already this poll is looking pretty scary...and we are the ones who have figured it out - what about all those other people who continue eating Gluten because they are told they are negative...like my cousin - who has been so ill for years but had a negative biopsy and blood but is totally convinced that its not gluten even though his family history screams to at least check it out :o

GFinDC Veteran
GFinDC
Posted

I tested negative on blood antibodies but the blood draw was 3 months after I went gluten-free. I did get a positive hit on one of the gens but I don't remember which one. I think it is the one that makes you grouchy in the morning though.

cahill Collaborator
cahill
Posted
I did get a positive hit on one of the gens but I don't remember which one. I think it is the one that makes you grouchy in the morning though.

I think I hit positive for that same one, :lol:

Aly1 Contributor
Aly1
Posted

I am a little confused by this poll, so maybe someone will educate the newbie! (Or maybe it's just my brain fog, I am out of it this am!). I thought that there are 2 conditions - celiac and gluten intolerance (well, wheat allergy too, but that's irrelevant here) that fall under an umbrella term of gluten sensitivity. I thought that it's possible to have false negatives for celiac (which is gluten damage specific to the intestines) but that gluten intolerance (non-celiac reactions to gluten) do not show up on tests. Is that incorrect? I tested negative for celiac (bloods only) so I believe that, unless my test was a false negative, I therefore fall into the gluten intolerant category. Do I have it wrong somewhere?

Skylark Collaborator
Skylark
Posted

I think the point of the poll is to show everyone how many people with negative blood tests (for whatever reason) still get sick from eating gluten.

Aly1 Contributor
Aly1
Posted

Oh okay so I am clueless in a different way :oD. But - are there tests that show plain gluten intolerance?

And i voted Negative. I tested negative and get So Sick on gluten.

Oats Newbie
Oats
Posted
  • Author

Most doctors leave it at that if the patient tests negative for celiac - not even considering that non-celiac gluten sensitivity might cause the same symptoms!

So yes, the point is to figure out how likely it is that gluten is the culprit, even if you test negative for celiac (no matter if you actually are celiac or the gluten your sensitivity to gluten has a different cause)

I am really surprised by these results... And glad I made the poll so more people won't immediately rule out gluten as the cause of their troubles.

With these results its hard to believe that the the blood tests are supposed to be over 90 % accurate!

Skylark Collaborator
Skylark
Posted

With these results its hard to believe that the the blood tests are supposed to be over 90 % accurate!

This is hardly a controlled study. :P

I'm not sure where got the idea celiac testing is 90% accurate. The studies I've read on the sensitivity of celiac tests give wildly variable numbers depending on both how well the assay is performing and how severe the celiac damage is. I've seen results as low as 70% specificity. You only get 90% under optimal conditions.

Aly1 - No, there is no test for non-celiac gluten intolerance other than response to the diet.

Oats Newbie
Oats
Posted
  • Author

This is hardly a controlled study. :P

I'm not sure where got the idea celiac testing is 90% accurate. The studies I've read on the sensitivity of celiac tests give wildly variable numbers depending on both how well the assay is performing and how severe the celiac damage is. I've seen results as low as 70% specificity. You only get 90% under optimal conditions.

Aly1 - No, there is no test for non-celiac gluten intolerance other than response to the diet.

Yes! I also came across some studies like that. With at least a handful of studies on this I really don't see why the official numbers are so high.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.