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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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

How common are false negatives?   21 votes

  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


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
      102,721
    • Total Posts
      914,574
  • Topics

  • Posts

    • Gluten challenge. Random reactions of gluten sensitivity (brain fog)
      hi all, I have brain fog and I suspect that is due to gluten sensitivity.  When I became aware of those symptoms in the past, I did an elimination diet, and gluten introduction  seemed to correlate with the perceived brain fog Then, I was off gluten for a year, but because it is self-diagnosed it is not always easy to explain it and remain 100% gluten free when, for example, travelling or invited to someone's house for dinner. So, I thought I wanted to get to the bottom of this and check for celiac decease first. I have been doing a gluten challenge for the last 4 weeks, and my symptoms are very strange. Sometimes, I eat a slice of cake or a croissant and I can be tired and foggy for the whole day.  Strangely,  there are other times where i can eat bread or a full pizza and have no symptoms at all. Beer is strange, sometimes it affects me, sometimes it does not at all... I am not sensitive to Pasta so far... I am very confused. I thought that maybe it was because the consumed gluten quantity but there does not seem to be any correlation at all. Sometimes, I think that it has to be something else (not the gluten) that is causing those reactions. I cannot understand the random reaction to gluten.  Does anybody have a similar experience or an insight or what could be going on? Thanks!!!    
    • I got WELL!!
      It sounds like things are looking up for you. Happy dance, happy dance! Happy Valentines Day!
    • Help understanding test results??
      I forgot to add this...I only had one positive on the complete celiac panel.  I had a positive on the DGP IgA test, my visual endoscopy "looked fine" but my biopsies revealed a Marsh Stage IIIB (moderate to severe villi damage).  My symptom at the time was anemia.   Keep eating gluten daily until all testing is complete.  This is really important!   Hang in there!    
    • SO HUNGRY. All. The. Time.
      Over my 6 gluten-free years, I have endured this "Starving Syndrome" several times.  Actually, I have lost count.  I am 5'4" and frequently eat more than my 6'4" husband.  My weight has gone from a low of 93 lbs. to my current high of 105 lbs.  I eat as much as I possibly can.   I agree about the fats helping me to feel full.  I'm beginning to test out the "grain hypothesis" as mentioned above. It seems (feels) to me that when I go through a major healing spurt, my body just wants more food!  No idea if this is actually what is happening.  Still, I have come to look at it as a "good thing" when my body wants lots of food.  I just relax and try to give my SMART body what it wants.
    • I got WELL!!
      Update on my progress: 1.  By thorough and consistent evaluation of my food diary (every item ingested for 6 years); I've finally figured out that both dairy and nightshades cause me PAIN!  I had tried eliminating these previously; but it was no help.  I tried again anyway...and IT WORKED!!  Maybe because I'm healthier now?  Never was lactose intolerant; but BOTH these items cause me PAIN!  All over, wish-I-were-dead PAIN! 2.  Just completed 2 courses of Xifaxin.  One in November and one in February.  The first course helped some with the Buddha Belly.  This second course helped a lot!  Fingers crossed that things will only continue to improve.  (I actually think it may be helping reduce the fatigue!  But I won't mention it as I don't want to jinx it!) 3.  Added back rice.  Had been grain-free for 3 years.  Seems fine and maybe even beneficial.  I'm pursuing adding more variety to my diet.  Looking at amaranth and buckwheat.  Plan to discuss diet with nutritionist after my next GI appt.  to get tips on this.  (Had to postpone this appt. due to bad headcold--first in many years!) 4.  Plan to discuss changing levothyroxine brand at next internist appt. in a couple weeks.  Currently taking Tirosint--and love it.  But...investigating other options like Levoxyl since I may have felt better on that.  Sadly, Pfizer was NOT helpful the last 2 times I called them to discuss gluten content/contamination.  Mylan generic was VERY helpful!  Choice to be determined.  Goal is to reduce fatigue. 5.  Continuing with exercise, meditation, drawing, etc.  Paying attention to mindset and emotional calm.  Optimism is my friend. 6.  On a humorous note, my hairline continues to advance!  I always had the highest of foreheads.  Ha!  Now my hairline is moving, from all directions, closer to my eyes!  i actually have developed a widow's peak!  This is too funny.  Sixty-six years old and my hairline keeps getting thicker and more extensive!  Mother Nature toys with me! HAPPY VALENTINE'S DAY to everyone!!   Remember to love yourself!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,771
    • Most Online
      1,763

    Newest Member
    Christine1962
    Joined