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Scopes And Blood Work
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2 posts in this topic

Had the scopes yesterday.  Ugh.  I think it was a downright horrible experience, but now knowing what it all entails, I wouldn't be scared if/when it needed to be done again.

 

Took numerous biopsies all the way down to the small intestines b/c there was inflammation in the esophagus, and took stomach biopsies also.  Papers I was given on the way out with photos stated the biopsies were to diagnose h pylori and celiac sprue.  It looked like 2 biopsies were taken for the each diagnosis;  I read several should have been taken. Disappointed.  Of course, I could be reading the papers incorrectly.  There were no pics of the small intestines either.  Should there have been?

 

In the other end, 2 polyps were removed and diverticulosis was diagnosed.  Hilariously, he handed me a xeroxed pamphlet about eating more grains and fiber for that.

 

I called the doc's office today to make Tuesday's appointment for the pathology results and said I didn't hear about the blood work for celiac; the nurse then told me it was negative.  Again, I don't know exactly what tests were run.  I don't know whether to be relieved or disappointed but I have so many issues that point to celiac, and she reiterated to wait on the biopsies.  I have already begun eliminating gluten and I intend to continue on that path and see how I feel.  

 

I really do wish I'd already received an answer though, and at this point if he says it isn't celiac, I will believe what these tests showed, and consider myself gluten intolerant or sensitive by continuing to eliminate it and judge by how I feel. 

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make sure to ask for copies of all of your results, and then you can post them here for others to comment.  I was negative on the EMA and TTG IgA but had a strong positive on the DGP IgG.  My GI didn't seem to think it was too bad, but fast forward a year and now he's said at my last two appointments he believes my damage is further down where a traditional endoscopy can take samples.  I still have low Vitamin K, and I just had neutral and total fat malabsorption tests completed and turns out I'm malabsorbing both kinds and that's why I've been taking huge amounts of vitamin K for it to move up a tiny amount.  

 

University of Chicago Celiac Center does recommend 5-6 biopsies.  http://www.uchospitals.edu/pdf/uch_014187.pdf  It's a shame not all doctors know this.  I had eight taken, but they were all negative, but I had an appointment yesterday where the doctor explained the length of the intestine and surface area and how the damage can be really patchy.   He kept saying there is so much still to learn about celiac disease, and he is exactly right!

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