Nervous About Biopsy Results

[sneezydiva]

Hi I posted here over a week ago with my whole sob story--New Here and Overwhelmed. To make a long story short, I've been running on empty for almost 10 years now. I started getting severe stomch pains, bloating, and bowel problems, and weight loss 3 months ago. I had an endoscopy done May 31st, and was told there was "inflammation" and they "took a few biopsies". I can't get a straight answer about what they are looking for with the biopsies. I found out about Celiac while tying get an idea of what they possibly could be looking for besides cancer. My appointment is next Monday to finally find out the results. This appointment was scheduled on May 31st immediately after the endoscopy. The waiting has been torture.

Anyway, I strongly suspect I am celiac or at least gluten intolerant. I've continued to eat gluten in case they did not look for it in the biopsy so that I could ask for blood tests. But what should I do if they actually do diagnose celiac through the biopsy? Should I even bother with the blood test? Or what if they biopsied for celiac, but tell me it is negative? Should I still demand the bood tests? It sounds like there are a lot of false negatives with the blood tests, but the biopsy is definite. Money isn't an issue as I do have good insurance. But I'm tired of arguing with doctors who say I'm the picture of health when I'm not. But at the same time, I want a real diagnosis if possible. I know I will try the diet regardless, but it would life easier explaining it to others, especially family that acts like I am a hypochondriac.

[DarkIvy]

Hi I posted here over a week ago with my whole sob story--New Here and Overwhelmed. To make a long story short, I've been running on empty for almost 10 years now. I started getting severe stomch pains, bloating, and bowel problems, and weight loss 3 months ago. I had an endoscopy done May 31st, and was told there was "inflammation" and they "took a few biopsies". I can't get a straight answer about what they are looking for with the biopsies. I found out about Celiac while tying get an idea of what they possibly could be looking for besides cancer. My appointment is next Monday to finally find out the results. This appointment was scheduled on May 31st immediately after the endoscopy. The waiting has been torture.

Anyway, I strongly suspect I am celiac or at least gluten intolerant. I've continued to eat gluten in case they did not look for it in the biopsy so that I could ask for blood tests. But what should I do if they actually do diagnose celiac through the biopsy? Should I even bother with the blood test? Or what if they biopsied for celiac, but tell me it is negative? Should I still demand the bood tests? It sounds like there are a lot of false negatives with the blood tests, but the biopsy is definite. Money isn't an issue as I do have good insurance. But I'm tired of arguing with doctors who say I'm the picture of health when I'm not. But at the same time, I want a real diagnosis if possible. I know I will try the diet regardless, but it would life easier explaining it to others, especially family that acts like I am a hypochondriac.

A positive biopsy result is the most "real" diagnosis you can possibly get. There can be false negatives, even with the endoscopy, but if the biopsy is positive, you don't need any further testing. Usually, though, they give you bloodwork BEFORE the biopsy. If I were you I'd call the doctor and ask him/her exactly what they looked for in the biopsy. Ask if they checked for celiac. This way at least you know what they are looking for.

I know how you feel, though. I'm in a very similar position. I had some bloodwork done that was negative -probably because I'd been gluten free for a while already. I've been back on gluten for three weeks now and my endoscopy is scheduled for Wednesday. I'm also very anxious... pretty much everyone who knows me is supportive and thinks I have celiac, and it runs in my family anyway, so odds are that's what it is. I have this really nagging feeling in the back of my head saying "what if you ARE a hypochondriac? What if the biopsy comes back negative?" I can really relate, it's a frustrating, long process. Good luck!

[ravenwoodglass]

I have this really nagging feeling in the back of my head saying "what if you ARE a hypochondriac? What if the biopsy comes back negative?" I can really relate, it's a frustrating, long process. Good luck!

First, your not a hypochondriac. I feel like yelling that but I won't. You are not imagining your pain or your symptoms. Do not let the doctors try to convince you that you are.

If the biopsy should come back negative you need to try the diet strictly for at least a couple of months. False negatives abound even with the biopsies. You have 22 ft of small intestine and if the right spot is not biopsied or read correctly or if damage is not severe enough yet you can get a false negative. If you do have a negative result do the diet as if it was positive for a month or two at least and also cut out dairy at the same time. If needed a dietary challenge after sympoms resolve is really all the proof you need.

[debmidge]

My advice when it comes to relatives, acquaintences, co workers, casual friends.....don't over explain unless you have to point out something about the gluten free status of food or the diet; don't give them any more information about you're being positive or negative other than saying "yes, the tests concluded that I have celiac disease." For some stupid reason some people are fixated on blurting out that if the test is negative, then why do you have to eat gluten free? As if there's no such thing as a false negative on a test.

For example; let's say that you got a negative test for lung cancer and you're a smoker. After hearing that your test was negative (and your thanking your God) would your closest people say to you "Oh boy, now you can keep smoking!" No.

I found that the less personal information I give out, the easier it is to deal with other people. Just our experience. For instance, my husband had positive blood test but negative biopsy (as he was gluten-free for a year before biopsy). I just tell people, yeah he's positive for celiac and end the speculation there.

[sneezydiva]

Thanks all. So to recap, if they did indeed biopsy for Celiac and it is positive, then that's it, I have my answer. But if they biopsied and it is negative, I should still push ahead and demand the blood tests?

Obviously, if all they did was look for bacteria I will demand the blood testing. I have tried asking them what they biopsied for, and I can't get a straight answer. All they say is "to find the cause of the inflammation" Well, Duh! I already knew that, but what do you suspect it is?! Argh!

I'm just so convinced I am at the very least gluten intolerant. After so many years of suffering, and either being told it's just my allergies or all in my head, I think I can see the light. It was a bit of a fluke me being referred to the GI doc and him ordering the endoscopy as everyone seemed so convinced I has an ulcer. But now I feel*this* close to getting some answers. I just pray they biopsied for celiac.

Debmidge, that is good advice as far as dealing with family. Your smoking analogy is a very good one.