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 Celiac.com!
    eNewsletter
    Donate

Negative Test - Need Some Advice


beanbird

Recommended Posts

beanbird Rookie

Hi Everyone,

I'd be really grateful if anyone could give me some advice on what to do.

I went gluten-free for 2 months (I felt AMAZING!), then started a gluten challenge, I managed to get 3.5 weeks in before I decided I couldn't face anymore, and got tested. Although my digestive symptoms weren't quite as bad as they had been before I went gluten-free, I had a whole host of other symptoms I couldn't cope with, (continuous stabbing pains, itchy skin, achy joints, and feeling depressed).

I got my results back yesterday, negative, and I am gutted. Although I know it was unlikely I would get a positive, I had hoped some how it would be. I knew I had to keep on eating gluten until I got my results, I have a docs apt in 3 days now, and I know they would retest me when I have done the full 6 weeks (I'm not at 4.5 weeks eating gluten), but I'm not sure if it is worth it. I feel like just going gluten-free, after all getting a positive result sounds like hardwork!

So what would everyone do? Just go gluten-free now? or wait another 1.5 weeks, get another test done?

I was looking at the EnteroLab website, and wondering if I should find a UK equivalent (I am in England) and try that route of testing.

I am just so drained from all this gluten, I am so depressed and I have no fight left in me. :(

Thanks for listening.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Gluten intolerance is much bigger than just celiac disease. Just because you didn't test positive for celiac, does not mean you are not gluten intolerant. Scientists have, so far, only been able to create testing for celiac, they do not have a test specific to gluten intolerance yet. Did you have gene testing done? There are many genes specific to gluten intolerance.

If you want to have Enterolab testing done, then go for it...many people feel better once they have this testing done, it gives them answers that simple celiac testing doesn't give. I did not have the money to be tested 9 years ago when I went gluten free. I did have gene testing done last year, and I have double DQ1 genes, which are gluten intolerant genes.

If gluten free makes you feel amazing, then truthfully, that should be your answer.

Link to comment
Share on other sites
ang1e0251 Contributor

I haven't been tested because I don't think I could take a challenge long enough for it. I was gluten-free about 6 months when I was financially able to be tested. I don't care about the test, I'm just glad I feel like a normal person again.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,212
    • Most Online (within 30 mins)
      7,748

    DaniellePaxton
    Newest Member
    DaniellePaxton
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
    • Scott Adams
      I agree, and hopefully your doctor will contact you soon about the next step, which will likely be an endoscopy to confirm your diagnosis. Do you have celiac disease symptoms? 
    • Kirbyqueen
      Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young. Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.   Big thanks to everyone for the suggestions and positive thoughts!
    • trents
      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
    • Bayb
      Hi, I received my labs via email yesterday and have not heard back from my doctor yet. Can anyone tell me if these results indicate I have Celiac?      Endomysial Antibody IgAPositive  Ft-Transglutaminase (tTG) IgA6  H0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10 - Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten-sensitive enteropathy. FImmunoglobulin A, Qn, Serum55  L87-352 (mg/dL) Ft-Transglutaminase (tTG) IgG183  H0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9
×
×
  • Create New...