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

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.


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.

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.

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. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    2. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    3. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    4. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    5. - trents replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Finding gluten free ingredients


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
×
×
  • 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.