Positive Blood Tests But No Biopsy

[Rebecca92]

So I was diagnosed via a celiac panel approximately three years ago and have been gluten free since (minus the rookie mistakes and CC) My symptoms have definitely gotten better but I don't feel 100% so I decided to see a gastroenterologist I've been having a lot of nausea with some vomitting along with having to run to the bathroom a few time a day but had trouble going off and on . While I'll admit that sometimes I mess up and CC myself (I live with gluten eaters lol) there's no way it's gluten related I am extra careful when preparing and choosing food and cosmetic products. I had an endoscopy at a drs.office a few months ago and they did find a small ulcer and said that my small intestine was inflamed but didn't seem too worried about it, but honestly I don't trust the guy anymore he spent a total of two minutes talking about my results :\ but that's another rant. They gave me horse pills to take twice a day before I eat and being that I'm young and in college of course I never ended up taking them all. The gastro doc gave me a two week supply of an acid blocker to try to heal up an ulcer if there is one.  The gastro was surprised that the positive celiac blood test wasn't followed with a biopsy of the duodenum because there are false positives with blood tests. He said they would call in two weeks and see how I feel, and if I'm not feeling great then we should go ahead and schedule and endoscopy and a colonoscopy. Obviously I'm not thrilled with this idea so I'm hoping the acid blocker works (which the nasea is getting better) but if I'm still having "bathroom" issues and an extremely tender abdomen on the left side I'm thinking about doing the tests. For the endo he said that if I am a celiac even if I've been gluten free for almost three years I will most likely show some damage and also mentioned checking to make sure there's not a small bowel malignant tumor or something and the colonoscopy to check for microscopic colitis. I'm thinking about maybe just doing the endo for now and only doing the other if I get no answers. It was extremely scary to hear him say the word cancer he said that about 3% of celiacs get the malignant tumors. I was just wondering if anybody had any advice or if anyone knew what exactly he meant by false positive, if it wasn't celiac then what else could it be? I mean whatever it is it obviously likes a gluten-free diet so there's no way I'm going back but it just has me wondering, the doctor didn't really explain much about false positives. I'm sorry if this seems long or rambling but this is the only place I can ask these kinds of questions talk about these things without people getting grossed out or confused lol unfortunately I am the only celiac I know in R. The chapter in my town always meets on saturdays...and I always work saturdays. Go figure lol

[cyclinglady]

I'm pretty tired to respond, but I have to say that if you've been diligent about being gluten free for three years, you should not have any damage in your intestines.  We have others here who have been scoped years later and their intestines show no damage.  That said, you may be glutening yourself while living with gluten eaters.  But, maybe not.

 

You might have something else going on like Crohn's or maybe just picked up h. pylori which could be causing your ulcer.  So, I'd go with the endoscopy and colonoscopy.  If they do test for Celiac, make sure they follow the procedures outline on the University of Chicago's celiac website.  At least six or seven tissue samples should be taken.  But, if you've been gluten-free for years, your blood test will be negative and it's a crap shoot regarding the biopsy.  

 

Good luck!  Research and get empowered! 

[WinterSong]

Definitely check out the University of Chicago's page. My understanding is that false positives are rare, but it is definitely something to look into because you're still experiencing symptoms, and the other possibilities are serious. 

 

Your biopsy and test results will most likely come back as negative. If you get a gene test done, you can see if you even carry the gene to have Celiac. It could bring you a little closer to figuring out what's going on. 

 

If you do have Celiac, you could be dealing with CC or a secondary food intolerance (which is common).

 

Good luck and feel better!