Called To Go For Endoscopy

[maribeth]

Well I had a message on my AM from the dr that's going to do the endoscopy and a colonastomy. It's been 2 months since I was told by my dr that she would make an appointment with a specialist. I have called my dr and the specialist several times to find out when I could get an appt. and never heard back til now. I've been gluten-free for about 6 weeks now. I'm not going back to eating gluten!!! I was unable to get back to the dr as they were gone for the day and won't be able to call till monday now. Probably won't get in til the end of the month or even the new year and want to go while I'm off for the holidays instead of having to miss work again. Will anything abnormal show after 2-3 months of being gluten-free. Should I perhaps not have the endoscopy? I know you're supposed to be on gluten to have the test but I'm definately not going back on gluten as I feel so good now. Have a great day. Beth

[Guest nini]

from what I understand if you are gluten free the endoscope won't show anything if there was damage to begin with. my personal opinion would be that you already have your answer and don't need to go through with the biopsy. I never had a biopsy and I do not doubt my dx one bit as I feel SOOOOOO much better off of gluten and I will never ever willingly go back to eating gluten again, especially not for any stupid test! You have your answer! Don't do it!

[happygirl]

If you want accurate tests, you must be eating gluten for an extended period of time.

I had positive bloodwork, and on the direction of my doctor, immediately went gluten free, had the biopsy five weeks later, and it was negative. I have since moved, and doctors look at my report and tell me I don't have Celiac...they dismiss me when I tell them the circumstances of the biopsy. They aren't interested.

Even if you go back on gluten now, it doesn't mean that damage will show up for them to diagnose.

[Mary Contrary]

Gee this sound just like me maribeth, I just made a thread in the wrong place..I put it in post diagnosis...but I am having my biopsy and a colonoscopy done on this Tuesday..I have however been off of wheat/gluten for 2 months now and I am finally starting to see a slowing down of my constant D...i am hoping something will still show up, surely if the villi of my small intestines is ruined it couldn't have healed up in 2 months, especially if i am still having D.

my regular Doc is awful..i made the appointment with the Gastro myself and was lucky enough to get in fairly soon...and he listened to me...i like the man alot..my regular Doc told me to go home and eat toast...

oh by the way i did have blood work done and it was negative..but I am certain it is Celiacs..if you read my other post, I have had on going issues with wheat for along time...

[daffadilly]

Everyone has to make their own decisions, I personally would skip it. Instead i would just get the Enterolab gene test... & maybe the fat absoption test, if that is clear then it really means that your villi are okay.

IMO biopsy is not necessary, if you want to a doctors permission to eat a healthy diet, then you will almost have to kill yourself first by eating gluten and then if you happen to have DQ1 genes you might not get the villi atrophy anyway - but you might get lots of other damage that they will not look for.

Even if you villi are damaged it can be spotty & if they do not take up to 15 biopsies they will surely miss it. Then there is the matter of the doctor "reading" the biopsy...

seems like a lot of trouble for nothing to me, but if you want an Official diagnosis then that is what you have to do, but you sound like you have your priorities all together already...

[Helena]

If you want accurate tests, you must be eating gluten for an extended period of time.

I had positive bloodwork, and on the direction of my doctor, immediately went gluten free, had the biopsy five weeks later, and it was negative. I have since moved, and doctors look at my report and tell me I don't have Celiac...they dismiss me when I tell them the circumstances of the biopsy. They aren't interested.

Even if you go back on gluten now, it doesn't mean that damage will show up for them to diagnose.

Happygirl,

I know you're seeing some specialists at well known research centres---are these the dr's who are telling you that you don't have celiac?!? I could see a GP who doesn't really know that much about celiac doing so . . . but I would expect people who are actively engaged in medical research to listen to what you have to say especially since you really know what you are talking about. Have you brought in journal articles to prove your point? How can they ignore what experts on celiac say on the matter?

Am feeling good about my decision not to go through with the biopsy at the moment (and I've been feeling ambivalent). . . . I might not have given the villi enough of a chance to get damaged and if I had gone through with it it could very well have been negative. But as is, the blood tests are strongly suggestive of celiac and my GI doc has recommended we skip the biopsy I hope that dr's I deal with in the future take that seriously.

[Mary Contrary]

Everyone has to make their own decisions, I personally would skip it. Instead i would just get the Enterolab gene test... & maybe the fat absoption test, if that is clear then it really means that your villi are okay.

IMO biopsy is not necessary, if you want to a doctors permission to eat a healthy diet, then you will almost have to kill yourself first by eating gluten and then if you happen to have DQ1 genes you might not get the villi atrophy anyway - but you might get lots of other damage that they will not look for.

Even if you villi are damaged it can be spotty & if they do not take up to 15 biopsies they will surely miss it. Then there is the matter of the doctor "reading" the biopsy...

seems like a lot of trouble for nothing to me, but if you want an Official diagnosis then that is what you have to do, but you sound like you have your priorities all together already...

I really appreciate your opinion, I have everything scheduled for tomorrow and am going to have it done, the colonoscopy is my main objective, I want the piece of mind that there isn't something else going on, even though I am quite sure there isn't.

And if the biopsys are negative, which it sounds like they will be, well so be it. If there is nothing else wrong with me, then that will be my answer regardless. I'll know for sure it is Celiacs, because I am already, after my two months off of gluten, starting to get. I don't need a test to verify it for me, I won't eat gluten again just for the sake of a positive test. Atleast with this disease you don't need anybody's permission or diagnosis to take care of yourself.

I'll just feel better, mentally atleast, after the colonoscopy, because there is always that nagging feeling that it could be something serious or life threatening. And as long as I'm there and prepared for it I'll, go ahead with the endoscopy as well.

[happygirl]

Happygirl,

I know you're seeing some specialists at well known research centres---are these the dr's who are telling you that you don't have celiac?!? I could see a GP who doesn't really know that much about celiac doing so . . . but I would expect people who are actively engaged in medical research to listen to what you have to say especially since you really know what you are talking about. Have you brought in journal articles to prove your point? How can they ignore what experts on celiac say on the matter?

Am feeling good about my decision not to go through with the biopsy at the moment (and I've been feeling ambivalent). . . . I might not have given the villi enough of a chance to get damaged and if I had gone through with it it could very well have been negative. But as is, the blood tests are strongly suggestive of celiac and my GI doc has recommended we skip the biopsy I hope that dr's I deal with in the future take that seriously.

Let's see....my doc at JH (that I love!) says that no matter what we want to call it, gluten is a problem for me (Celiac vs. gluten intolerance vs. sensitivity vs. allergy, he doesn't care).

my doc at NIH was kind of on the fence....he recognized that gluten bothered me, but didn't know about "intolerance."

a doc who used to be a leading armed forces doc (i'll leave it at that) told me basically it was all in my head

none of these are Celiac specialists...if you aren't a Celiac specialist/take a specific interest in Celiac...they don't care. I could tell you athe worst story about doc #3....it was not a pleasant app't.

And people wonder why I'm disillusioned sometimes

[Helena]

Gotta love those docs whose explanation for everything they don't know about is 'it's all in your head'! I think it is an ego thing----this way they have an explanation for everything. There's *nothing* they can't diagnose.

Well, at least the other docs believed that you shouldn't be eating gluten even if they aren't informed about diagnosing celiac.

I just thought that doctors who are at the top of their field would tend to realize that their understanding of everything that isn't in their particular research area is sketchy and that they'd look things up if they didn't know them off the top of their head. But I guess that's overly idealistic!

[happygirl]

girl, i would've thought so too.....but it is not the case for all of them, unfortunately!

hopefully, word will get out....