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Frustrating endoscopy!

Sarahp5

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Sarahp5 Newbie
Sarahp5
Posted

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? 

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sddave Enthusiast
sddave
Posted

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
Victoria1234
Posted

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
cyclinglady
Posted

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!  

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frieze Community Regular
frieze
Posted

my usual tune, follow the money...

sddave Enthusiast
sddave
Posted

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
cyclinglady
Posted

Frieze...you at so right!  

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GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

" 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
Sarahp5
Posted
  • Author

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.

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

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      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
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      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

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      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
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