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Neg Biopsies

jolenevw

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jolenevw Newbie
jolenevw
Posted

My family doc recieved my results of my biopcies(sp) they happened to be negative. I haven't seen my surgeon yet, to get his diagnosis. My question is , Is it still possible to celiac disease if your tests come back negative? I find out on moday from my surgeon.I'm still edgy that he told the nurse to tell me that he feels its celiac disease and thats why he went as far as to take the biopcies. I don't know i may be getting because monday is just around the corner. I've stayed off gluten now for almost 3 weeks and feel a whole lot better. I just don't know anymore, i guess i'm confussed.Thanks for letting me rant a bit just worried.

Jolene

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KaitiUSA Enthusiast
KaitiUSA
Posted

Did you have blood tests too? If so, which ones? Have you had a gene test? If you do not have the gene you are 99.999% sure you do not have celiac but you could have just an intolerance then. If you have the gene, then you have predisposition to it and can have it activated.

Yes, you can still have celiac disease with a negative biopsy. If there is not damage yet(in early stages of celiac disease) or if there is sporadic damage then they will miss a diagnosis.

Also, if you were gluten free prior to testing that can interfere with results.

Carriefaith Enthusiast
Carriefaith
Posted

How many biopsies did they take? If they only took 1 or 2 then it is possible they have missed the damage; however, if they took 5+ from different sections of the upper small intestine then they most likely would have found damage if present. If you have had negative blood tests and biopsies then you could still be gluten or wheat intolerant. A celiac gene test will tell you for sure if you carry the celiac gene.

jolenevw Newbie
jolenevw
Posted
  • Author

Thank you for repling so fast to my post. I haven't had any of the blood work done. I think the surgeon was pretty set on that fact that it was celiac disease so one botheres to issue blood work. I can't really have the blood work done now can I since i've gluten free right? They took a total of three biopcies, now would that be sufficient or not? I'm just concerened becuase i reallt don't want to be back at square one again with no ansewers. I bet alot of people know how i feel. Thanks again

Jolene

Guest nini
Guest nini
Posted

I can't believe the Dr. would do the biopsies first without the blood work. That seems a bit like "jumping the gun" to me. I dunno.

If being gluten free makes you feel better, then stay off gluten. If you want or need the medical "proof" you would have to go back to consuming gluten for quite a while before getting the blood work. Or you could do the Enterolab tests. Those seem to have worked for a lot of people.

KaitiUSA Enthusiast
KaitiUSA
Posted
Thank you for repling so fast to my post. I haven't had any of the blood work done. I think the surgeon was pretty set on that fact that it was celiac disease so one botheres to issue blood work. I can't really have the blood work done now can I since i've gluten free right? They took a total of three biopcies, now would that be sufficient or not? I'm just concerened becuase i reallt don't want to be back at square one again with no ansewers. I bet alot of people know how i feel. Thanks again

Jolene

Do you want to have an official diagnosis? Or doesn't that matter? If you want an official diagnosis then in order for testing you need to be on gluten. You need to be on gluten for about 3 months consuming equivalent to 3 pieces of bread per day.

They never usually do biopsies first. It can rule it in if it is positive but it can't rule it out because you can get a false negative if you have no damage yet or sporadic damage.

The complete panel of blood tests has been very efficient in detecting celiac. My blood tests and gene test were enough for a diagnosis. The doctor did not even want to do a biopsy.

As Nisla said, an Enterolab may be an option because they still do testing as long as you have had gluten within the past year and they test for genes, tTG, malabsorption, etc. Check out more about them at www.enterolab.com. This is a great test. Some doctors accept it and some do not.

2old4 Rookie
2old4
Posted

Jolene-

I had my bloodwork done approx same time as my biopsy. The doctor told me he saw intestinal damage when he was doing the biopsy but the results from the specimens taken were negative. I asked why and he said that he only took 3 and those areas must not have been affected. My bloodwork was all positive. I am going to see him again in a few weeks and ask specific questions about my numbers. Good luck, don't give up.

Patty

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