Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Positive Blood Test, Negative Biopsy, Damage Noted


gingergrly

Recommended Posts

gingergrly Newbie

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks

Hi, Ginger! Glad you posted today.

There are many issues with your situation:

1. False positives are so rare that they are almost non-existent. There is a high false negative rate, though. My bloodwork was "off the charts" as well, so I also had biopsies which were positive.

2. You need to be eating gluten at least three months (and lots of it) prior to the biopsies. Perhaps that one week off gluten did it for you.

3. At least 8-11 biopsies are needed; most doctors only take 3. They could easily miss it.

4. It is an individual disease; each person has different healing times. I was told it can take 2-5 years to get my gut up to the level of someone without celiac. However, it is fairly common to begin feeling better tummy wise after a few weeks - some people feel dramatically better. As you do not, perhaps check for any hidden gluten in products (i.e. soy sauce, vitamins, meds, toothpaste) or cross contamination in your house. Plus once off gluten many people experience other food intolerances that make them sick such as soy, dairy and so on.

There are tons of experienced people on this board who will have lots of great advice to give you.

Hang in there! It is a tricky thing to figure out but it can be done. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,375
    • Most Online (within 30 mins)
      7,748

    MistyD2121
    Newest Member
    MistyD2121
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
    • Zuma888
      Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.
×
×
  • Create New...