Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Blood Test Result Statistics - Place A Vote, Make A Difference!
0

How common are false negatives?   21 members have voted

  1. 1. I have a gluten intolerance. My (first) blood test came back...

    • Positive
      6
    • Negative (falsely)
      15

Please sign in or register to vote in this poll.

16 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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?

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,363
    • Total Posts
      920,544
  • Topics

  • Posts

    • Hi. Im currently under consultants at my hospital,  and have just been for a blood test to test for celiacs. My symptoms are.... Low weight (8stone and 5ft6tall) Joint pain,particularly my hips and lower back  Severe pain in my gall bladder area which happens spontaneously... Especially after eating foods containing gluten.  When i have foods with wheat in i pain in my  right side just under my bottom rib, i become a bit spaced out and cant focus on anything. Also get diahorrea aswell. I recently contracted C-Diff and was in hospital for 4 days very poorly. Im 29years old (female) and the doctors r trying to work out what is wrong with me. I have always struggled to gain weight,  even after having 2 children i am still only 8stone. I was just wondering if u think i could have celiacs?  The pain in my side has been on and off for 7years! And the last 3years its been severe. And it definitely comes on as soon as i have gluten/wheat.   
    • Hello we got her biopsy results back and they are normal.  The doc is calling her non celiac gluten intolerant and lactose intolerant.  Now we will just wait to see if the gluten-free diet helps her.  She does have elevated IgG to casein and wheat  I know there is controversy on whether that test is helpful or not but either way we are hoping she gets well going gluten-free    
    • My family was out camping earlier this month to our favorite lake.  They have a restaurant there we have going to for years.  Since I recently went gluten free, I was very nervous about trying out their menu.  Usually, restaurants have a select few items you can choose from that are considered "gluten-free" (i.e. Olive Garden).  However, this restaurant even had French Fries that were in a separate fryer than the rest of fry population.  I considered it a huge treat when they not only went out of their way to make sure you could get sandwiches gluten-free, but also had French fries and a dessert available.  The best part of it was I didn't get sick afterwards.  Yahoo!  Thank goodness it's 3 hours away.
    • too many of us are treated this way, unfortunately   ^^^^^  and many of us have been in the same (no quality of life!  always sick! )  situation and yes, it can be life threatening if left untreated.  so glad you're feeling better   no thanks to the almighty doctor  i have a celiac diagnosis and my g.p. (who i go to - or used to go to - for my check ups, see how my blood pressure is, vitamin levels, etc.  normal maintenance, you know) tried to give me viberzi!!  for my ibs-d !!  what???  i have celiac.  i was furious!!  (i'm still pretty upset)   o, the good news was that he gave me a coupon for the first month.  after that, it's THIRTY DOLLARS A MONTH.   not to mention all the lovely side effects (one of them was diarrhea!!)   no, thanks, buddy....   anyways, rant over lolz - welcome to the forum!
    • Those numbers are all perfect meaning they show you likely don't have celiac.  Those tests are very accurate IF you are eating a normal diet of gluten.  You must be eating gluten for weeks prior to this testing.  So if you have not been then yes these results are not accurate.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,437
    • Most Online
      1,763

    Newest Member
    Laurabella
    Joined