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

Tested Negative For Blood Test...


madminx

Recommended Posts

madminx Rookie

Hello everyone, 

 

I just got results back from a gluten blood test. They were normal. 

 

Is is possible to get a false negative blood test because I've been on a gluten free diet since January? Also I haven't accidentally eaten gluten for over a month before the test was taken. 

I'm pretty sure I have celiac disease because when I accidentally eat gluten (even very small amounts)  I get a severe reaction and am sick for 1-2 weeks. 

 

Thanks. 

 

 


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



Celiac.com Sponsor (A8-M):



powerofpositivethinking Community Regular

unfortunately those tests are worthless since you weren't eating gluten, and I'm sorry that your doctor didn't already know that before running them  :(

 

take a look at this link regarding a gluten challenge needed for blood tests and biopsy: Open Original Shared Link

 

what are your symptoms?  if you don't need an official diagnosis then skip the gluten challenge since you said you react horribly to small amounts of gluten.  if you do want to try and get the official diagnosis others will be able to help regarding best time to eat gluten so that it impacts your life as minimally as possible.  do you think your doctor would agree to the two week gluten challenge for the biopsy vs the 12 weeks for the blood test?

 

good luck!

 

Hello everyone, 

 

I just got results back from a gluten blood test. They were normal. 

 

Is is possible to get a false negative blood test because I've been on a gluten free diet since January? Also I haven't accidentally eaten gluten for over a month before the test was taken. 

I'm pretty sure I have celiac disease because when I accidentally eat gluten (even very small amounts)  I get a severe reaction and am sick for 1-2 weeks. 

 

Thanks. 

NoGlutenCooties Contributor

Just wanted to add that you can get a false-negative blood test even while still eating gluten.  Unfortunately, the tests aren't as reliable as one would hope.  I've seen estimates that indicate a negative blood test result is only about 70-75% accurate, while a positive test result is about 97-98% accurate.

That said, if you're already gluten-free the test is useless.

kareng Grand Master

It is likely that being gluten free for several months could cause a blood test to be negative.

 

 

Talks about being gluten-free and getting negative blood tests:

 

Open Original Shared Link

 

Open Original Shared Link

 

 

Current blood tests are quite accurate.  Some of the older ones were not as good and that may be why the rumor that blood tests aren't reliable?  I would suggest looking at reliable sites like the Univ of Chicago Celiac Center.

 

Open Original Shared Link

 

"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)."

GF Lover Rising Star

Karen, thank you for clarifying the accuracy figures.  Research in this area has moved relatively quickly and we must use current data in our discussions. 

 

Colleen

NoGlutenCooties Contributor

 

"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)."

 

Interesting... not at all what my doctor told me just two months ago.  I'm wondering if some of the false negatives are due to the variances in what different labs consider positive vs. negative?  For example, my ttg IgA (I think I have that right... the tissue number) was only 13 and some labs would have considered that negative.  But my biopsy confirmed definite Celiac with moderate to severe villi damage.  So had a different lab and/or a different doctor looked at my test results they may have given me a false negative result.

kareng Grand Master

Interesting... not at all what my doctor told me just two months ago.  I'm wondering if some of the false negatives are due to the variances in what different labs consider positive vs. negative?  For example, my ttg IgA (I think I have that right... the tissue number) was only 13 and some labs would have considered that negative.  But my biopsy confirmed definite Celiac with moderate to severe villi damage.  So had a different lab and/or a different doctor looked at my test results they may have given me a false negative result.

 

 

 

 

 Many of us have seen that there are a lot of doctors that do not keep up with research and current standards of practice for Celiac disease. Labs sometimes use different units of measurement so the ranges would be different.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Hello everyone, 

 

I just got results back from a gluten blood test. They were normal. 

 

Is is possible to get a false negative blood test because I've been on a gluten free diet since January? Also I haven't accidentally eaten gluten for over a month before the test was taken. 

I'm pretty sure I have celiac disease because when I accidentally eat gluten (even very small amounts)  I get a severe reaction and am sick for 1-2 weeks. 

 

Thanks. 

 

Hi Madminx,

If you have been gluten free for 11 months, there's no way you would get an accurate result, hon. Sorry.

 

You can have a severe reaction and be sick for a few weeks even if you have non-celiac gluten sensitivity, so it's really hard to say if you have celiac or not based on that reaction. I heard Dr. Fasano say in a recent interview that NCGS affects the body in a variety of ways,

with some pretty devastating consequences, even in the absence of celiac disease.

 

Unfortunately, the most accurate testing requires gluten ingestion which raises the antibodies.

 

It is true that some people will test negative for celiac antibodies and still have villous atrophy or even "early celiac", but the tests themselves are considered pretty accurate.

 

Depending on how important it is for you to have a diagnosis of C D, the treatment is still the same. It's a tough decision, IMO

to do a gluten challenge. 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,817
    • Most Online (within 30 mins)
      7,748

    sleuth
    Newest Member
    sleuth
    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

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.