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
      133,196
    • Most Online (within 30 mins)
      7,748
    Jen Fleming
    Newest Member
    Jen Fleming
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.