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

I'm confused.


lilly929

Recommended Posts

lilly929 Newbie

I was diagnosed with Celiac in March of 2018 and, since then, I have adhered to a strict gluten free diet. I was just told that, though my initial levels were around 51, they are now up in the low hundreds. This makes NO sense to me seeing as I check everything and am super careful to make sure I am not eating anything with gluten in it. Why would my levels go up after completely cutting out gluten??? 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Posting full results maybe someone can give better insight. My thoughts are that perhaps it was getting better, your system put the guard down then some time before the test something slipped in?

This diet has a HUGE learning curve, and you have to rely on yourself and not others to fix food. No eating out, limiting processed foods, avoiding stuff prepared by stores or in deli. Heck you have to throw out your cutting boards, colanders, butter containers, jam, and nut butters, etc when you change over as all can be CCed, you scratched pans and pots can be issues worn porous plastic bowls and Tupperware. It can take years for many to clean out and get everything down. PLUS Antibodies can stay raised for over 6 weeks after a exposure.

RMJ Mentor

Were the tests run by the same lab?  Each manufacturer has their own ranges and results can’t be compared.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,090
    • Most Online (within 30 mins)
      7,748

    Kerischultz
    Newest Member
    Kerischultz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kiwifruit
    • trents
      Thanks for following up with us on the results. This might be helpful to you now:  
    • Kiwifruit
      Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
    • Scott Adams
      I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after  a year or so on a gluten-free diet. 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
      Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life. Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge. Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision.
×
×
  • Create New...