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Negative Biopsy

Booghead

By Booghead
in Coping with Celiac Disease

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Booghead Contributor
Booghead
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

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Monklady123 Collaborator
Monklady123
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

My philosophy is that if you feel better not eating gluten then you shouldn't eat gluten. Who cares what the test says? There are all sorts of variables on that biopsy anyway. If you feel better then don't eat gluten.

Katrala Contributor
Katrala
Posted

Can you get ahold of the biopsy? Find out the doctor's standards for diagnosis? Or the pathologist's?

Lisa Mentor
Lisa
Posted

Positive blood panel in conjunction with positive dietary result can be diagnostic as well. Welcome to the Club! :D

Darn210 Enthusiast
Darn210
Posted

My daughter's doctor would have diagnosed you based on positive blood test alone . . .

Were you gluten free when you had the endoscopy done? That would affect the results. Regardless, I have yet to see a false positve on a blood test and I have seen boatloads of negative scopes where people do well on the diet (scoping can be tricky . . . not enough samples and/or damage is patchy).

Personally, I'd call yourself diagnosed and get on with and enjoy your gluten free life . . . :D

Marilyn R Community Regular
Marilyn R
Posted

:) I had negative blood tests and negative Upper GI. You'd have to tie me up and force feed me to stick gluten in my mouth. It makes me sick, and I don't need a diagnosis to tell me that.

My 11 year old great niece has a kidney condition and my niece took her to a locally respected urologist. When the Urologist read the radiology report, he told my niece that the results reported by the radiologist were medically impossible, and referred her to a pediatric urologist and nephrologist several miles away.

My first thought was I wondered if that was the same radiologist that read my biopsy results, but it doesn't matter. It may actually be better to be undiagnosed. A while ago someone posted that they were denied life insurance due to having celiac disease.

I was pretty sure I'd be negative on both tests because I wasn't willing to do a gluten challenge. I finally found out what was sucking the life out of me on my own, and having someone with the initals M.D, behind their name really didn't need to clarify it.

So what do you do now? Do what has been making you feel better!

sandsurfgirl Collaborator
sandsurfgirl
Posted

There are no false positives on the blood tests. If your blood test is positive you have celiac. Don't let an uninformed doctor tell you differently. There are many stories on this board of people who were told by ignorant doctors they could keep eating gluten even after a positive blood test and years later they were extremely ill when they finally went gluten free.

My son's pediatrician is somewhat of an expert in diagnosing celiac. She diagnoses primarily by blood tests alone. She doesn't believe in subjecting children to endoscopy unless it's absolutely warranted.

If I remember correctly you react pretty badly to getting glutened right? If you don't have a gluten problem then it's not going to give you a reaction.

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IrishHeart Veteran
IrishHeart
Posted

Positive blood test and positive results from a gluten free diet sure sounds like a DX to me.

There are many reasons why the biopsy results were negative (not enough samples, biopsy from the wrong area, pathologist error, villous atrophy is not extensive YET, etc.)

Stay the course, stay well! ;)

P,S. My blood panel was NEG and my former GI doc failed to biopsy me when he did the endoscopy back in 2009 (something never explained to me, BTW) and I went downhill for another year and a half. My new celiac-savvy GI said: Your positive response to the gluten-free diet and resolution of multiple vitamin deficiencies and anemia and your long history was plenty for me. You were essentially starving to death and you saved your own life. I would never ask you to resume a gluten-free diet for biopsy. That's just insane.

I love this guy!!! :)

Chad Sines Rising Star
Chad Sines
Posted

even a positive from gluten-free alone is enough for me and many docs.

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      how much gluten do I need to eat before blood tests?

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    • catnapt
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