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

Opinions Much Appreciated


Mysh

Recommended Posts

Mysh Rookie

Hello, looking for some thoughts/opinions similiar to a post that was just done about further testing (I didn't want to hijack that thread).

I was diagnosed approximately 3 weeks ago. I cant get into a gastroenterologist for another 3 weeks, and then it would probably be another 3-4 weeks before he can do a biopsy.

I am, after reading up a bit on Celiac wondering if I need to go ahead with a biopsy or whether it would be bneficial to either a) seek further or more elaborate tesing and just go a dietician or whether I should just continue on the course my doctor has set me on.

My test results so far include:-

Transglutaminase IgA - 4 Range <5

anti - Gliadin IgA - 22 Range <20

anti - Gliadin IgG - 46 Range <20

This is all I've had apart from the usual blood screen. My iron and B12 levels have been severly low my entire life.

I should add that my gluten intake will be from hidden/cross contamination. I figured out years ago that I feel better when I don't eat "Carbs", so I rarely eat bread, pastas. Like I said, it's been years since I've had a regular diet. My doctor of course doesn't know this - we barely discussed the diagnosis at all and she has referred me elsewhere.

That being said, I am concerned that I am going in for a biopsy to confirm a diagnosis, when infact I am happy to deal with the diagnosis as it is.

Someone mentioned before that my body might be already either in a healing state or one where it has effectively healed and I am being glutened which is causing my issues.

Thoughts very much appreciated. Should I go for more tests? Can someone interpret my blood tests? Any advice welcome too.

Thanks!


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



Celiac.com Sponsor (A8-M):



Mysh Rookie
:unsure: :unsure: :unsure:anyone?
ravenwoodglass Mentor
That being said, I am concerned that I am going in for a biopsy to confirm a diagnosis, when infact I am happy to deal with the diagnosis as it is.

Thanks!

IMHO the answer is in bold above. You have positive blood work and if that and resolution of symptoms is enough for you then the choice to biopsy or not is up to you.

GFinDC Veteran

The way I understand it, the biopsy is a hit or miss thing, and can give false negatives in the best situation. If you have been pretty much gluten-free for a while, there is probably an even lower chance than usual that the biopsy will show something conclusive. At least that's how my non-doctor head sees it.

Mysh Rookie

Thanks everyone. I'm still in two minds about it although I am leaning towards not having it done more than having it done.

I am going to see my GP again and also a naturopath so things might be a bit clearer after that. I have also come across a dietician who has celiac herself so if I can get in to her i think it will be money well spent.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.