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Nervous About Biopsy Results

sneezydiva

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sneezydiva Apprentice
sneezydiva
Posted

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.

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DarkIvy Explorer
DarkIvy
Posted
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 Mentor
ravenwoodglass
Posted
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 Rising Star
debmidge
Posted

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 Apprentice
sneezydiva
Posted
  • Author

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.

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    • Dr. Gunn
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      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
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      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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