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

What Are The Chances Of Blood Test Not Showing Celiac Disease
0

6 posts in this topic

Sorry, not a very well worded title. What I mean is, how reliable are blood tests - what is the chance that it would come back negative even if I did actually have celiac disease.

Having a blood test tomorrow, hoping it would be a simple yes or no (actually kind of hoping for a 'yes' so i can get on with sorting it out and feeling better/not having a horrible messed up digestive system!). I'm guessing it's definitely not going to be simple though!

I read somewhere that not many celiacs actually show up as celiac on a blood test, is this true?

0

Share this post


Link to post
Share on other sites


Ads by Google:

No, that is not true. The best thing to do is make sure your doctor orders a complete celiac panel along with nutrient testing. If these come back negative and you have symptoms of Celiac Disease, the next step should be endoscopy.

The diagnosis process can be frustrating - but taken one step at a time armed with knowledge of proper testing procedures makes it go much more smoothly.

There are reasons for many negative tests - removing gluten is the most common. Being deficient in Total IgA or IgG or recently triggered Celiac Disease without significant damage are all reasons for negative results. Additionally, there is Non-Celiac Gluten Intolerance which has many of the same symptoms as Celiac Disease - NCGI does not trigger the immune system when gluten is ingested to produce the antibodies measured in celiac blood work.

For now get the blood work done and wait for the results.

Hang in there :)

0

Share this post


Link to post
Share on other sites

Thanks for the advice :)

I had stopped eating wheat for a few weeks (during which time my tummy was much better) and then started eating gluten again for the test (since 6 weeks ago). Symptoms seemed even worse than before for many many weeks (the bloating and gas was unreal!!) but is settling down a bit now so really not sure what to think. Hopefully the test will shed some light!

0

Share this post


Link to post
Share on other sites

From the University of Chicago:

http://www.curecelia...false-negatives

In blood tests, are false positives less common than false negatives?

Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac).

http://www.cureceliacdisease.org/archives/faq/which-blood-tests-should-i-have-to-screen-for-celiac-disease

Which blood tests should I have to screen for celiac disease?

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease. As long as you produce IgA (total serum IgA confirms you do), tTG-IgA is 98% accurate in measuring elevated antibodies. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an EMA blood test is also given.

Other gliadin antibody tests are not useful in screening for celiac disease.

0

Share this post


Link to post
Share on other sites

I find the term "screening" for celiac to be confusing. The University of Chicago and other celiac centers often run screening fairs to screen the general population. For this use the tTG-IgA with Total Serum IgA is excellent.

If a person presents with symptoms of Celiac Disease or demonstrated reactions to gluten, I strongly believe a full celiac panel should be run as the Deamidated Gliadin Peptide tests are often the first indication of gluten sensitivity.

I was "screened" with tTG IgA only and was barely/weak positive which triggered the rest of the panel. Personally, my IgG levels were higher in tTG, DGP and AGA than the IgA levels although my Total IgA was in "normal" range. Had my "screening" test been one point lower I would have likely not been referred to GI and it would have been chalked up to one more in a very long line of "normal" blood work.

The percentages of false negatives and false positives are based on different data - most are based on subjects diagnosed with Celiac Disease - those of us with severe symptoms and damage that go undiagnosed for decades are not counted in most data.

Bottom line - IMO...if you have symptoms you believe are gluten related - push for the complete/full celiac panel for the best opportunity for complete data.

0

Share this post


Link to post
Share on other sites




I came back negative for celiac from tTG and and IgA (that's all my doctor ordered) but my recent endoscopy showed flattening. I'm still waiting for the biopsy results but they think it could be celiac.

Sorry, not a very well worded title. What I mean is, how reliable are blood tests - what is the chance that it would come back negative even if I did actually have celiac disease.

Having a blood test tomorrow, hoping it would be a simple yes or no (actually kind of hoping for a 'yes' so i can get on with sorting it out and feeling better/not having a horrible messed up digestive system!). I'm guessing it's definitely not going to be simple though!

I read somewhere that not many celiacs actually show up as celiac on a blood test, is this true?

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
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined