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Negative Blood Test, Positive Biopsy?

Courtney101

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Courtney101 Rookie
Courtney101
Posted

Just wondering if this is a common occurance? Have many people here experienced this?

The reason I ask is that my blood test was negative and I'm trying to decide the next step. Just wondering if a biopsy might actually show up with something.

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Emilushka Contributor
Emilushka
Posted

You can definitely have a negative set of blood work and then a positive biopsy. The blood tests aren't perfect and won't catch everyone. The biopsies are the same, but with the biopsy you have the additional chance that if there's something else going on, you'll find it, and also that you can hopefully see how badly damaged your intestines are and know where you stand right now.

If your doc is in favor, I'd say go for the biopsy. But your doc may just say that your case is strong enough in terms of how you respond to things, your symptoms, etc that you should just try a gluten-free diet and not wait for the endoscopy to be scheduled and then to get results back. Either way (scope or diet) would be a valid thing to do next.

Keep in mind that if you choose to just go gluten-free, in order to get a valid biopsy later, you'll have to go back to eating gluten. Which will make you sick, if you have Celiac. So that's another piece of the puzzle to consider. If you need to exhaust all your options for diagnosis, get the scope. If you need to get well, go on the diet. But either way, have a chat with your doc and clue them in to your thinking.

Kay DH Apprentice
Kay DH
Posted

If you decide on the endoscopy/biopsy, make sure your doctor is knowledgeable about celiac. You would need to be on the gluten challenge (also known as making yourself sick on gluten) for more than 3 weeks. That is +4 slices of white bread equivalent per day, not sourdough bread. My GI was sure I only needed to be on the gluten challenge for a week (he thought I had diverticulitis instead and dismissed most of my symptoms). He only took 1 biopsy and picture on the endoscopy. I was negative for diverticuli and celiac. Because of the spotty nature of inflammation, at least 4 duodenum biopsy samples need to be taken. My symptoms started a year ago after getting the flu, and I went gluten-free almost immediately. It is good to know that I don't have any physical damage to my GI tract, but the evidence that I have celiac is my symptoms from eating even small amounts of gluten, and the ~10% chance of having it from being HLA-DQ8. If you can trace any family history of GI cancers or gluten intolerance, that would be good too. My family history is unknown.

julandjo Explorer
julandjo
Posted

Just wondering if this is a common occurance? Have many people here experienced this?

The reason I ask is that my blood test was negative and I'm trying to decide the next step. Just wondering if a biopsy might actually show up with something.

I had the biopsy first, which showed tremendous villous (is that the right term?) damage. My doctor "suspected" celiac, but wanted the blood test to confirm it. I reminded him that I'd already been gluten free for 3 months at that point, so he made me do a 2-week gluten binge. From what I'd read on here I was worried 2 weeks wasn't long enough, but I felt so incredibly sick that whole time I didn't care. Plus the dr. assured me it was long enough. Well, the blood test came back negative and because of that, he won't give me a firm diagnosis. Are you kidding me?! Damaged villi + dietary response = diagnosis, no? Oh well, whatever.

And yeah, either test can easily have a false negative. I'd recommend getting the biopsy before you go gluten free. If you are celiac or gluten sensitive, you'll truly regret having to go back on gluten if you ever need a biopsy in the future. It SUCKS. :)

  • 4 weeks later...
flutterby Apprentice
flutterby
Posted

My doctor's going straight for the biopsy without even getting the blood work back yet, so I figure go for it, if you can afford it. He also wants to test for some other things, too, so that might be why. I am kinda curious to see how my tests wind up because I've been trying to keep gluten-free for quite a while now.

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