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
      133,435
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    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

    • knitty kitty
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory 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.