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

Celiac Diagnosis - blood test and biopsy aren't enough?


alison93

Recommended Posts

alison93 Newbie

I have been dealing with reflux, nausea, and abdominal pain since November 2015. I first had a biopsy of my small intestine which showed no villi damage, but inflammation and lymphocytes. After this I got a tTg IgA blood test, and the level was a 7 (doctor says this is "slightly elevated"). My doctor still doesn't seem convinced that it's celiac disease - is this really not enough evidence? I started a gluten-free diet one week ago and have been feeling a little better so far (definitely don't have abdominal pain after I eat anymore). My doctor has requested more blood tests (gliadin IgA/IgG, endomysial antibodies, and the genetic test for the celiac gene). These tests are costly and will require me to start eating gluten again, so I want to make sure they really are necessary for a diagnosis. What else besides celiac would cause the elevated tTg IgA, even if it is just "slightly"? Anyone have experience with mid-range test results that aren't definitive?


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



Celiac.com Sponsor (A8-M):



Palvyre Apprentice

Mild elevation can be caused by other autoimmune diseases. Like Crohns. 

GFinDC Veteran

Hi alison93,

You shouldn't stop eating gluten until all the testing is completed.  The antibodie tests are not going to be as accurate if you do.  You may get false negatives.  It's best to continue eating a regular gluten diet until all tests are done and results confirmed.   Usually the process is blood antibodies first and then an endoscopy.

Welcome to the forum.  You may want to check out the Newbie101 thread that is stickied at the top of the forum for some good introductory information.

Archived

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

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.