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

Frustrating endoscopy!


Sarahp5

Recommended Posts

Sarahp5 Newbie

Hello! I had. My endoscopy today and the GI wouldn't do blood work because she said that the biopsy would tell more than the bloodwork. I was fine with that , but I have been so very sick for the past two weeks I asked her if she'd be able to tell me anything that she sees during the endoscopy. 

When I came out of the sedation she said, "everything looked ok" and explained that there was less of a chance that I am positive because of what she saw. I am so devastated. I know I have it and it's ruining my life. 

Has anyone else had a seemingly normal exam during endo. But the biopsy came back positive? 


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



Celiac.com Sponsor (A8-M):



sddave Enthusiast

Your GI doc might of been looking for a flattened intestine during the endoscopy.   And didn't see any flattened areas.   I don't know what the percentages are, but a flattened intestine usually means villi has been damaged from eating gluten if your celiac.

Victoria1234 Experienced

I've noticed lots of people on this board have had ok looking intestines, but the biopsy came back positive for damage. How many samples were taken? Ask to see the report.

cyclinglady Grand Master

Yes!  My GI told me (and I got the report) that everything looked good.  No damage that he could see, but he wisely said that we would have to wait for the pathologist's report (got that report too).   My celiac blood panel was mildly positive which means in my case that I just had one positive on the panel and it was not sky high.   I had moderate to severe intestinal damage (Marsh Stage IIIB).  

Even if you have flattened or damaged villi, there are almost 10 other diseases that can cause intestinal damage.  By ordering the blood test, it can confirm celiac disease and not Crohn's or a parasite. 

Why wouldn't your GI order a celiac blood test?  Even the simple screening is less than $100!  Better yet, why wouldn't your GI formal normal protocol as recommended by the GI Association?  I would strongly recommend a new GI.  Who knows what this doctor might miss?  

But....in her defense.  You have only been sick for two weeks?  We do not know your whole story, but since 1in 133 people have celiac disease (like 80% of those are walking around undiagnosed), it is not unreasonable to order a celiac blood test.  It is way cheaper than an endoscopy!!

Keep eating gluten.  Did you know your GP/PCP can order the blood test too?  

Advocate for your health.  Document and get copies of everything.  It is your right!  (You might need it for a lawsuit.....but that is not likely).   Bet if you put requests in writing with your concerns referencing published studies and GI diagnostic procedures, she would change her tune.  Be nice though!  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

frieze Community Regular

my usual tune, follow the money...

sddave Enthusiast

I would now be treated for IBS if I didn't question on my followup after being told I had IBS "what about my flattened intestine from the endoscopy".   And my GI doc who did the endoscopy ordered another scan of my biopsy.   Then from that result decided to do a blood test for gluten antibodies.   They did a bunch of blood tests right after my endoscopy.   I have NO idea why they didn't do a test for gluten antibody then.

cyclinglady Grand Master

Frieze...you at so right!  


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



Celiac.com Sponsor (A8-M):



GF-Cheetah Cub Contributor

" Has anyone else had a seemingly normal exam during endo. But the biopsy came back positive?  "

Yes.  Right after my daughter's endoscopy, the GI doctor told me that the intestine looked pretty good.  Then two weeks later, they called to tell us that the biopsy results were positive for celiac.

Sarahp5 Newbie

Thank you all so much! The acute symptoms have been impacting my life in a big way for two weeks. Other symptoms have crept up over the past year or two. I am terrified to eat it again. I can literally barely function. I guess I'll have to wait. I was hoping for confirmation so I can begin handling it instead of still being in the dark. Thank you again.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...