Am I Doing The Right Thing?

[jayhawkmom]

I finally saw the GI today.

He asked me a million questions (or so it seemed) and carefully reviewed my blood tests and my medical history. We discussed my daughter's issues... and he DX me with IBS.

And, then he went on to say that with the results of my blood tests - he would not at all be surprised if Celiac was a part of my problem.

He "thumped" my abdomen in several places.... and at one point, it really hurt. And, he nodded and said... "Yep, I would not be surprised at all."

He sat down with a pen and his clipboard - and said, "I want to do an endoscopy to rule out any other issues."

I was fully prepared to give a big old NO WAY response if endoscopy were suggested. However, when he explained that he's not necessarily "looking" for Celiac - and wanted to rule out any other issues.... I just nodded and said ok.

I'm having it on Friday... and I'm pretty nervous.

He continued by telling me that I need to be consuming gluten... which I already knew. I wanted to say NO to that as well, but I've not been 100% gluten-free for very long at this point. But then he said that once I left the hospital, I would be put on a STRICT gluten-free diet, and I'll have a consult with a dietician. Regardless of the results - he said the gluten-free diet is mandatory. He said that dietary response, in his opinion, is the best indicator.

I really like this doctor. He was recommended to me by a doctor who HAS Celiac, and he's well respected by the members of the Celiac Sprue Association Support Group I attend.

Please tell me I'm doing the right thing. I swore up and down that I would not have an endoscopy. My husband is very happy that I've changed my mind. He feels that it's very important for me to have this done. I'm torn... but I'm on the schedule. I will go through with it, I just hate doubting myself so much.

[Guest ~jules~]

I had an endoscopy a week ago today, really it wasn't that bad. They give you so much medication you don't even remeber it, and I felt nothing afterward either. I also had a colonosopy 4 months ago, same thing with that procedure, I was too medicated to even realize what was going on. You'll be okay, your anxieties about the procdure are normal, I felt exactly the same way. The doc. is right about continuing to eat gluten until the procedure, or you may not get an accurate biopsy. Before mine I pigged out on pancakes, Within 3 days he called me with my results, and I was really glad to have a 100 percent diagnosis, so I could know for sure what was going on with me. Seriously the worse thing about it was getting the IV. Good Luck to you and don't be scared you can do it!!!

[daffadilly]

It is up to you, if you want that biopsy diagnosis, then the time to do it is now.

He already knows you have it. IMO this is just another example of doing another expensive test because it is an accepted procedure & to satisfy his curiosity & so that he can document the facts for any future research/papers. What most of us do not know is that we are really the guinea pigs for whatever they are studying.

Sorry, I am a little anti doctors. It is amazing how you can just watch them manipulate you.

(& believe me they know what they are doing)

But really it is up to you. Another way to look at is getting additional documentation for this disease via your contribution & it might help you to persuade some of your family members to get tested.

[gfp]

This doesn't add up.

He is doing a biopsy "to rule out any other issues."

other than celiac disease... why would you need to be eating gluten for this?

I'm not really concerned about the biopsy, I'm concerned about you eating gluten in the run up to a biopsy.

It sounds like your blood work is positive and he has already said you will need to be gluten-free afterwards regardless ...so why would you need to eat gluten for a biopsy that is "to rule out any other issues"?

How much damage does he want to see?

On a global level... yeah we get one extra case of proving that blood tests are conclusive but on a personal level why would you be the guinea pig?

I'm no enterologist but I would imagine that looking for other issues would be a lot easier after removing the source of the irritation ...

Just as a example: If your car had been leaking oil and you get it fixed and have the engine steam cleaned and take it to the mechanic I wouldn't expect him to say "well lets block the crankshaft emission filter again so its sucks oil out and give it a spin then look under the oil for other problems...." I would more expect him to say, well now the engine is clean of oil and we can see what we are doing lets check nothing else is damaged or nothing else was also causing the oil leak...."

[Canadian Karen]

I say do it, just to put your mind at ease that you have everything else ruled out. As long as you have a doctor who is willing to accept celiac as a diagnosis even without a positive biopsy, then there is no harm in it.

More and more doctors are starting to realize that the biopsy is no longer the "gold standard" of diagnosis. It is such a hit and miss situation as to whether they happen to hit a damaged spot or an undamaged spot. It's kind of like this: Imagine someone having a spotty rash on their back. Now the doctor is blindfolded and is supposed to take a biopsy of the back. It basically is hit or miss as to whether he hits the rash part or not. If he happens to miss the rash part, the biopsy would come back negative, does that mean the poor guy doesn't have a rash on his back? Of course not. It's the same with the intestinal biopsy. The doctors are still basically blindfolded, as they truly can't tell with the naked eye and their little camera whether there are villi there or not. They may hit an affected area, they may not......

Since they drug you so much that you basically don't remember anything anyway, I say go for it and put your mind at ease.........

Hugs.

Karen

[gfp]

I say do it, just to put your mind at ease that you have everything else ruled out. As long as you have a doctor who is willing to accept celiac as a diagnosis even without a positive biopsy, then there is no harm in it.

More and more doctors are starting to realize that the biopsy is no longer the "gold standard" of diagnosis. It is such a hit and miss situation as to whether they happen to hit a damaged spot or an undamaged spot. It's kind of like this: Imagine someone having a spotty rash on their back. Now the doctor is blindfolded and is supposed to take a biopsy of the back. It basically is hit or miss as to whether he hits the rash part or not. If he happens to miss the rash part, the biopsy would come back negative, does that mean the poor guy doesn't have a rash on his back? Of course not. It's the same with the intestinal biopsy. The doctors are still basically blindfolded, as they truly can't tell with the naked eye and their little camera whether there are villi there or not. They may hit an affected area, they may not......

Since they drug you so much that you basically don't remember anything anyway, I say go for it and put your mind at ease.........

Hugs.

Karen

Sorry, I missed taking in the part about its on Friday....

I am still wondering what eating gluten between now and Friday is going to do for the biopsy?

Taking the excellent example of Karen if it reacts at all it is more like having two spots on your back and a blindfolded Dr.

[Guest nini]

I wouldn't do it, but that's me. You are going to go gluten-free regardless of the results immediately after the procedure, so why on earth do the procedure? To rule out anything else? That doesn't make sense because if you start the diet and IT HELPS then you have your answer and it's not something else. Dietary response is the best indicator, and while this Dr. sounds more knowledgeable than most, he is still manipulating you into doing an expensive and irrelevent test. (Irrelevent because you already have your answer)

[jayhawkmom]

I have thought more and more about this.... and you are all right. I ate quite a bit of gluten last night... and I feel like Violet - the blueberry girl in Willy Wonka.

I can't/won't eat any more. If he's really looking for something else.... I don't need to poison myself.

But, my husband really wants me to have this done. I know he doesn't want me to go through this invasive procedure, but he wants to be sure that we've exhausted ALL possibilities.

I can understand his point. I can understand yours.

I feel like sh*t and I'm frustrated - and living (currently) in a big old foggy cloud.

[Guest nini]

I have thought more and more about this.... and you are all right. I ate quite a bit of gluten last night... and I feel like Violet - the blueberry girl in Willy Wonka.

I can't/won't eat any more. If he's really looking for something else.... I don't need to poison myself.

But, my husband really wants me to have this done. I know he doesn't want me to go through this invasive procedure, but he wants to be sure that we've exhausted ALL possibilities.

I can understand his point. I can understand yours.

I feel like sh*t and I'm frustrated - and living (currently) in a big old foggy cloud.

you see his point but does he see yours? Is he the one undergoing a unnecessary procedure to satisfy a Dr.s curiosity? Here's the thing, if you start the diet immediately and don't do the biopsy and start feeling better, great. If you eat gluten for the rest of the week, do the procedure and it doesn't find anything, what has it proved? IF the diet doesn't work then you can continue to rule out other things, but you've admitted that you feel better off gluten, and awful on it. Just my opinion, and do what you need to do, but I personally wouldn't do it.

[mythreesuns]

Wow, can I go to this dr???? Not because he's asking you to do the biopsy and continue to consume gluten, but because he's willing to consider the possibility that it IS celiac!

My dr agreed it could be a possibility, but when the blood test and biopsy came up negative he said "IBS". He did find some irritation in the lower stomach and upper small intestine, but found no damaged villi or h pylori or anything....in the 4 biopsies he took on the very upper small intestine.

Umm...not happy with that answer. And now he won't return my phone calls asking for the levels on my blood test.

[angel-jd1]

To me he sounds like a very open minded Dr, who is trying to rule out all sorts of things. He sounds like he is covering all the bases. I would go ahead with the biopsy for peace of mind (yours and his).

-Jessica

I finally saw the GI today.

He asked me a million questions (or so it seemed) and carefully reviewed my blood tests and my medical history. We discussed my daughter's issues... and he DX me with IBS.

And, then he went on to say that with the results of my blood tests - he would not at all be surprised if Celiac was a part of my problem.

He "thumped" my abdomen in several places.... and at one point, it really hurt. And, he nodded and said... "Yep, I would not be surprised at all."

He sat down with a pen and his clipboard - and said, "I want to do an endoscopy to rule out any other issues."

I was fully prepared to give a big old NO WAY response if endoscopy were suggested. However, when he explained that he's not necessarily "looking" for Celiac - and wanted to rule out any other issues.... I just nodded and said ok.

I'm having it on Friday... and I'm pretty nervous.

He continued by telling me that I need to be consuming gluten... which I already knew. I wanted to say NO to that as well, but I've not been 100% gluten-free for very long at this point. But then he said that once I left the hospital, I would be put on a STRICT gluten-free diet, and I'll have a consult with a dietician. Regardless of the results - he said the gluten-free diet is mandatory. He said that dietary response, in his opinion, is the best indicator.

I really like this doctor. He was recommended to me by a doctor who HAS Celiac, and he's well respected by the members of the Celiac Sprue Association Support Group I attend.

Please tell me I'm doing the right thing. I swore up and down that I would not have an endoscopy. My husband is very happy that I've changed my mind. He feels that it's very important for me to have this done. I'm torn... but I'm on the schedule. I will go through with it, I just hate doubting myself so much.

[gfp]

To me he sounds like a very open minded Dr, who is trying to rule out all sorts of things. He sounds like he is covering all the bases. I would go ahead with the biopsy for peace of mind (yours and his).

-Jessica

Yes but the question is with or without gluten?

If the biopsy is scheduled and this Friday then I don't see why not to have the biopsy if the Dr. is looking for other things or to rule thme out. Its a minor procedure .. will make a nice wad of $ for your Dr. and might rule other things out but what it won't do if you have been gluten-free is tell you anything meaningful about celiac disease.

(except perhaps you have not been as gluten-free as you thought?)

I would phone the Dr and specifrically ask WHY... is it to rule out other thiungs and if it is what difference other than making you ill will eating gluten have for a few days?

It sounds like a whole set of factors to me....

Firstly he CYA's ... just in case .. it could be something serious he misses.

Secondly he gets a wad of $$$$

Thirdly he can check your present level of damage

but I just can't see any possible benefit from eating gluten for another 2 days?

Presuming you started last night the antibodies will just be getting going... you can't expect to see any real damage to the villi for a while... but you could get inflamation or other things that could mask something else?

[penguin]

Personally, I would do it (and I did!). Your doctor sounds remarkably like mine. There's more than celiac to stomach distress, gluten isn't the only culprit of symptoms. It helped me, for my peace of mind, to know that I don't have ulcers, stomach cancer, chron's, etc.

As far as glutening the hell out of yourself until Friday, I don't see much of a point, that's not a lot of time. I was on gluten for 3 months before my biopsy Monday and all he saw was a little irritation on my small intestine. Like your doctor, he put me straight onto a gluten-free diet, because of my dietary response. I was still confused, because I was still drugged, but my chart says immediate gluten-free diet and I got handed a pamphlet on celiac (although he said he has no reason to suspect it?). I don't know, make sure whoever goes with you is paying attention when the doctor is speaking, DH didn't pay close enough attention for me.

Good luck with it all! Peace of mind is worth an IV and a camera down your throat (IMO).

[queenofhearts]

Personally, I would do it (and I did!). Your doctor sounds remarkably like mine. There's more than celiac to stomach distress, gluten isn't the only culprit of symptoms. It helped me, for my peace of mind, to know that I don't have ulcers, stomach cancer, chron's, etc.

As far as glutening the hell out of yourself until Friday, I don't see much of a point, that's not a lot of time. I was on gluten for 3 months before my biopsy Monday and all he saw was a little irritation on my small intestine. Like your doctor, he put me straight onto a gluten-free diet, because of my dietary response. I was still confused, because I was still drugged, but my chart says immediate gluten-free diet and I got handed a pamphlet on celiac (although he said he has no reason to suspect it?). I don't know, make sure whoever goes with you is paying attention when the doctor is speaking, DH didn't pay close enough attention for me.

Good luck with it all! Peace of mind is worth an IV and a camera down your throat (IMO).

When do you hear back about your biopsy, Penguin?

[penguin]

When do you hear back about your biopsy, Penguin?

I should hear by Friday

[jayhawkmom]

Like I said... I really like this doctor. He's actually speaking at our next CSA meeting. I guess those who have not been able to get an appointment with him (for whatever reason) are really looking forward to hearing him talk. I have waited a fair amount of time.... I made the appointment several months ago, long before I had any idea that a gluten-free diet would actually work for me.

He absolutely thinks I'm dealing with IBS. But did say that too many doctors don't go further to rule out Celiac, and just give a blanket dx of IBS. I'm glad he's considering that I really *might* have Celiac.

My blood tests were inconclusive. They were all mid-to-high normal, with the exception of the IgG - which was really high. It was supposed to be less than 20 - as the normal range for the lab I went through. And, it was 69. He said that it's one of the "least" Celiac specific tests, but such a high result definitely warrents investigation.

My daughter had duodenal ulcers.... perhaps that had some bearing on his decision. I don't know.

[gfp]

Like I said... I really like this doctor. He's actually speaking at our next CSA meeting. I guess those who have not been able to get an appointment with him (for whatever reason) are really looking forward to hearing him talk. I have waited a fair amount of time.... I made the appointment several months ago, long before I had any idea that a gluten-free diet would actually work for me.

He absolutely thinks I'm dealing with IBS. But did say that too many doctors don't go further to rule out Celiac, and just give a blanket dx of IBS. I'm glad he's considering that I really *might* have Celiac.

My blood tests were inconclusive. They were all mid-to-high normal, with the exception of the IgG - which was really high. It was supposed to be less than 20 - as the normal range for the lab I went through. And, it was 69. He said that it's one of the "least" Celiac specific tests, but such a high result definitely warrents investigation.

My daughter had duodenal ulcers.... perhaps that had some bearing on his decision. I don't know.

All OK... but is he actually aware you have been gluten-free?

Perhaps you said so but he was thinking of something else.

I would phone him and make sure he knows you were gluten-free, that you feel bad already on gluten and if he thinks you should continue with gluten until Friday? If he says yes then ask why.

[oceangirl]

All OK... but is he actually aware you have been gluten-free?

Perhaps you said so but he was thinking of something else.

I would phone him and make sure he knows you were gluten-free, that you feel bad already on gluten and if he thinks you should continue with gluten until Friday? If he says yes then ask why.

If you're still reading this, I would go ahead with the biopsy- eating gluten doesn't matter that much now. I couldn't do the challenge before the endoscopy/colonoscopy because I got too sick, so was gluten-free (mostly) for 4 months prior. I asked to be put completely under because of my fear of choking and my doctor absolutely agreed. So, I was nervous going in but remember nothing. One thing that did happen to me is I woke up crying- they believe it was the fentanyl (sp?) that put me under, and continued to feel deeply depressed for a day. Just something to pay attention to and tell your husband about. I think you will feel relief that they checked things out and rule out anything else, otherwise the ups and downs of going gluten-free may nag at you and you'll wonder. I wish you very good luck- it will be over with soon.

lisa

[Nantzie]

I think you should do the endoscopy. When I had mine done, I was already gluten-free for about three weeks, with only limited gluten for months before that (once I figured out it was a problem . I knew they weren't going to find any damage. But I'm glad he did the endoscopy anyway because now I know that there's nothing else going on in there.

My issue was that I didn't want the doctor give me a negative biopsy result and then tell me that that was proof that I DIDN'T have celiac. When I found that my doctor considered my dietary response good enough for him and that he felt that I should be gluten-free, despite the test results, that was what I was looking for from him.

It sounds like your doctor is just using the endoscopy to make sure there aren't any additional issues, some of which might interfere with your healing, and some of which might be an even bigger problem than celiac.

I hope you go ahead with the endoscopy. But either way, I'm glad you're feeling better with being gluten-free.

Nancy