Frustrating endoscopy!

[Sarahp5 0]

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? 

[sddave 3]

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 98]

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 1,663]

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!  

http://www.cureceliacdisease.org/screening/

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/

https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

[frieze 131]

my usual tune, follow the money...

[sddave 3]

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 1,663]

Frieze...you at so right!  

[GF-Cheetah Cub 17]

" 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 0]

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.