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

+biopsy/-labwork


rma94

Recommended Posts

rma94 Newbie

My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks


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



Celiac.com Sponsor (A8-M):



samcarter Contributor
My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

It is entirely possible to have damaged villi and still have a blood test come back negative for celiac; that is why the biopsy is still considered the "gold standard" for a diagnosis. Up to 20 percent of celiacs can have negative EMA, for instance; they're called "seronegative" celiacs. My doctor would only do the EMA test, saying it was the most sensitive for celiac; when it came back negative, even with my symptoms and positive response to the gluten free diet, he said I didn't have celiac disease. :rolleyes:

nikki-uk Enthusiast

...another one to add a positive biopsy/negative blood story (my hubby).

It is entirely possible, but I would expect the doc to rule out all other possible causes of damaged villi first :)

bear6954 Apprentice

esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

MaryJones2 Enthusiast

I'd trust the biopsy over the bloodwork. There are quite a few reasons bloodwork can be negative. Just my opinion, but if your condition improved on the gluten-free diet and you have a positive biopsy then I'd assume it was celiac until proven otherwise. Good luck!

ang1e0251 Contributor

Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

rma94 Newbie
esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

Actually I didn't know about the stricture until I requested a copy of the procedure report.


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



Celiac.com Sponsor (A8-M):



rma94 Newbie
Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

Thank you guys for the resonses. I am much improved since following the glutten free life. I guess I am just frustrated with the doctors and

lack of definate (sp?) responses from them.

ang1e0251 Contributor

Many of us can relate to that frustration.

caek-is-a-lie Explorer

Yeah, I'd get a copy of that report. Even doctors misread lab results. Mine sure did with my thyroid. "You're right in the middle of normal" was in actuality hypothyroidism! :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,377
    • Most Online (within 30 mins)
      7,748

    PCS
    Newest Member
    PCS
    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...