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Testing Done.

jenny2

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jenny2 Rookie
jenny2
Posted

can someone tell me if my blood tests come back negative for Celiac disease should i ask the doc for a upper endoscopy done? i had negative blood tests for celiac 8 years ago but postive upper endoscopy with flat villi. the docs thought that i didnt have celiac so i have continued to eat gluten for 8 years. flashforward to today, i am having alot of trouble with losting weight, and digestive issues. i just need so advice, thanks

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you had a positive biopsy there is a good chance you have celiac. Have you had the blood tests redone or did you get a copy of them? Some doctors will call a low positive negative. You might want to get bloodwork redone and then give the diet a good strict try no matter what the results. Or you could just go gluten free. Since both blood and biopsy have high rates of false negatives but not false positives the positive biopsy was significant in spite of the negative blood tests. Many doctors would have diagnosed with the positive biopsy since that has been considered the 'gold standard' for diagnosis.

JoshB Apprentice
JoshB
Posted

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

jenny2 Rookie
jenny2
Posted
  • Author

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

MissKris2 Newbie
MissKris2
Posted

Oh, wow. I hope the blood tests clear things up for you. Between your symptoms and the positive biopsy you had before, it sure sounds like celiac.

Roda Rising Star
Roda
Posted

Yes hon, go gluten free you've got nothing to loose except maybe your debilitating symptoms.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Wow...that's a huge weight loss, hun! :o When you say you were retested on friday, do you mean blood tests? Hopefully you will get some answers, but even if they are negative, you should still give the gluten free diet a good try (2-3 months). Sometimes gluten intolerance doesn't show up in your blood work, but it still wreaks havoc on your body. :(

Definately go gluten free, no matter what the test says.

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jenny2 Rookie
jenny2
Posted
  • Author

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

ravenwoodglass Mentor
ravenwoodglass
Posted

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

If you are going to have an endo do keep eating gluten until that is done. Even on gluten there is still a chance of false negatives with testing so when all testing is done give the diet a good strict try.

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