Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Negative - What To Do?

motif

Recommended Posts

motif Contributor
motif
Posted

Not sure now, got celiac disease or not? How certain are blood tests for celiac disease?

thanks

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

The blood tests are not always accurate. They can rule Celiac in, but the can not rule it out. A negative blood test does not mean that you do not have Celiac. There are the test that you should have had:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If you do not want to pursue further testing, you can begin the diet. A positive dietary response is a diagnosis in itself.

aikiducky Apprentice
aikiducky
Posted

The blood tests aren't very accurate especially in adults, I've read. You could ask for a biopsy to see what the state of your intestine is. Were you eating gluten at the time of the blood tests?

Pauliina

motif Contributor
motif
Posted
  • Author
Were you eating gluten at the time of the blood tests?

Pauliina

no, actually I was gluten free since few weeks, didn't know that for blood test it is also required.

I have also B12 level done and looks like is OK, didn't see yet for my own eyes the results.

But today feeling bad, bloating and heartburn.

thanks

aikiducky Apprentice
aikiducky
Posted

If you are gluten free before the tests, it might give a false negative. The same goes for the biopsy, so if you have continued to eat gluten free, that makes any more testing unreliable. Have you felt any better on the gluten free diet? Not necessarily completely better, but at all better?

Pauliina

motif Contributor
motif
Posted
  • Author
If you are gluten free before the tests, it might give a false negative. The same goes for the biopsy, so if you have continued to eat gluten free, that makes any more testing unreliable. Have you felt any better on the gluten free diet? Not necessarily completely better, but at all better?

Pauliina

not sure, I thought I did until I got hit again 2 days ago. Definitely have less abdominal cramps and burnings,

but since 2 days I feel weak and tingling plus heartburn. True is I drink some milk and buttermilk but it's not a gluten right? Never in the youth had problem with milk.

thanks

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,209
    • Most Online (within 30 mins)
      7,748
    Sharon Camden
    Newest Member
    Sharon Camden
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      There is dextrose in table salt?
    • trents
      Gluten Free Beer - The Enzymatic Hydrolyzation Process Problem

      By trents · Posted

      Jason, I have a bone to pick with your terminology. There is "gluten intolerance" which I believe is synonymous with celiac disease and then there is "gluten sensitivity" which comes from Non Celiac Gluten Sensitivity or NCGS for short. It is true, however, that there is still a lot of inconsistency in the use of these terms.
    • Liquid lunch
      Medicinal mushrooms 🍄

      By Liquid lunch · Posted

      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
    • Scott Adams
      Endoscopy

      By Scott Adams · Posted

      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. 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.):    
    • Scott Adams
      Biopsy results after 1,5 gfd

      By Scott Adams · Posted

      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
×
×
  • Create New...