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

Confused on test results


Deades

Recommended Posts

Deades Contributor

I did not have a blood test.  Had the scope looking for a stomach ulcer.  One doctor says I have celiac and another says no.  What do you think?

Here are the notes from my endoscopy:

Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

Stomach Antrim biopsy:. Gastric mucosa with minimal inflammation. No dysplasia or malignancy identified.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

While it is a shame that your doctor did not order a celiac blood test (are you sure?), he did find villi damage.  This can occur for many reasons but the predominant one is celiac disease.  You were anemic and had osteoporosis at the time of your diagnosis.  It is too soon for to for a bone scan, but how is your anemia?  Improved on a gluten free diet?  That should confirm the diagnosis and set your mind at ease.

If you look at the history of celiac disease, biopsies came first, long before blood tests. 

Open Original Shared Link

 

 

Deades Contributor

There was no blood test for celiac because he was looking for a stomach ulcer.  Celiac was not even a thought at the time. I have always been anemic but my red blood cell count was also low.  I am scheduled to see the doctor in midSeptember and will have my first blood test to check on iron levels prior to that visit.

cyclinglady Grand Master

I have been anemic my entire life.  It was always blamed on my being a women and Thalassemia (genetic anemia), but I also had iron-deficiency anemia that waxed and waned.  Since I have been gluten-free for four years, my iron-deficiency anemia is long resolved!  I still have Thals, but my body has long adapted.   I am not ever going to win the Senior Olympics, but I can hold my own!  

My ferritin levels did go up with my three month check-up.  Since my hubby had been gluten-free for 12 years prior, I knew the diet well.  If your results are not perfect, give yourself more time.  The learning curve for the gluten-free diet is steep.  

It took much longer for other "hidden" issues to resolve (fractures, neuropathy, food intolerances, etc.).  

  • 3 weeks later...
ironictruth Proficient

Ok, I am looking through your old posts now after commenting on your recent one.

Ditto with cycling lady. Shame on them for not ordering the freaking celiac panel. Why would they not order it after the scope to confirm?

Will your insurance at least cover the genetic test? 30% of the population has the gene and only a small percentage develop celiac. However, at least you would know if you had a low or high risk gene. It might make you feel more confident in the diagnosis, especially having a doc tell you he thought the diagnosis of celiac was perhaps not correct.

Archived

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

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

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • 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.