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

Negative Biopsy Results


resoree

Recommended Posts

resoree Newbie

Hi. I had a positive blood test result more then six months ago and started my gluten free diet then. I still had some stomach problems every now and then but managed to gain some weight, but I also lost some recently. Because I have an HMO, it took more more then six months to get my upper endoscopy and sigmoidoscopy done. (i read others experiences and no one had a painful endoscopy experience like me. I vomited and my whole esophagus hurt for almost a week!) Anyways the results from the biopsy came out negative. Do you think the results were negative because i was on a gluten free diet for so long (i did cheat every now and then)? What do they do with the biopsies at the lab? Since then (four days ago) i stopped my gluten free diet and so far its been good. I just wondered if it was possible to have a positive blood test and a negative biospy.

Leslie


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Postive blood test with a negative biopsy is not at all unusual even among people who keep eating gluten. The person taking the biopsy samples might miss the damaged areas or the lab might not be experienced reading celiac slides. In addition, you should not have gone gluten-free before the biopsy because, yes, six months is indeed enough time for the damage to heal. The final question is what criteria does your lab and doctor use to establish celiac? Some won't call it celiac unles your villi are completely flattened (yours wouldn't be because you went mostly gluten-free) but more and more experts are saying it should be called celiac with MUCH less damage.

Depending on which blood tests you had, these rarely give false positives. What blood tests were positive? What symptoms were you having? Did they resolve on the gluten-free diet? Did you feel better on the diet? These are some other questions you have to ask yourself.

richard

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    2. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    3. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    4. - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

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

    • Total Members
      132,842
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
×
×
  • 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.