Re: 1st Biopsy

[Guest guest]

Louise,

I really don't understand why you would want to do this. Who is "everyone"? Why do you care what they think? The biopsy is unlikely to provide you with any useful information. The only useful result would be a positive result but this is very unlikely. Because you are mostly gluten-free your result will likely be negative. A negative result will not be informative because you wont know if its negative because you don't have Celiac or if it's negative because you are not eating gluten. In order for the biopsy to be effective, you need to be eating a LOT of gluten. I was told that I would have to eat a slice of bread every day for 8 weeks before having a biopsy. That much gluten of course would have probably killed me. I already knew I was deathly ill when eating gluten and better when not eating it. Why kill myself to prove it to a doctor or insurance company? And, the

point about insurance companies is a good one. No need to create an extra pre-existing condition for yourself. Before doing the biopsy you should also understand that this test is invasive and carries risks of dangerous complications like perforated bowel, bleeding and infection. Complications are rare, but the risks remain. Why subject yourself to such risks when you have so little to gain from the test?

Second, a biopsy will NOT tell you anything about the Celiac gene. To find out which genes you have, all you need to do is a blood or saliva test.

Hope this helps.

From: Louise Audell <louise_gd@...> Sent: Wednesday, September 16, 2009 5:37:42 PMSubject: Re: [ ] 1st Biopsy

My doctor hasn't prescribed a biopsy, I am. I have an appointment with my Dr. next week to discuss this. I keep getting everyone telling me that there's no official diagnosis until I get one, and that we're just "guessing/estimatin g" that this is the real problem.I've also had my first child. She's now 2. I was told they couldn't really test for the Celiac gene if they didn't know which one I had, and only a biopsy would tell me this. Also, that my daughter would need to be re-tested when she's 4 or 5 because this one might not be...I think she said...accurate, until my daughter is older. I'm also not convinced that I've completely recovered from gluten, and that I'm eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that don't make me sick...I read labels, I use this forum, I make phone calls, etc. At this point, I'd be checking to see

if there's any damage or other problems going on in there...a colon check would be good too...as it's seemed for years that my body just won't ride itself of toxins, no matter what I do! Something's fishy.Gotta start some place...

Louise Audellart + designlouiseaudell. com(510) 531-4607

From: Wallace <AWallace@eastonbell sports.com> Sent: Wednesday, September 16, 2009 3:03:00 PMSubject: RE: [ ] 1st Biopsy

If you’ve been GF for years, a biopsy probably wont prove anything. You have to be eating gluten for the endoscopy to see the damage. Since you’ve been GF – the idea is that you’ve healed and there’s no damage. So im not sure why your doc would prescribe you get one? Anyone else?

Ive had 2 and also a capsule endoscopy. No pain on my end except for a sore throat the after the first one. I was in “twilo†anastasia. Not painful and takes less than 5 minutes.

No annual biopsy needed. Don’t be nervous…it’s really nothing.

-

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Louise AudellSent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy

Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, things I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.And, will I have to do this again? As in, have an "annual biopsy". Ugh.Please advise...I'm a bit scared/nervous.Louise

__________________________________________________

[Guest guest]

I have to agree with Lillyth.  I actually did the gluten challenge - 4 slices of bread a day for 6 weeks.  I was so sick I could barely function and I still had a negative biopsy.  In the end, it didn't change anything for me other than to make me sick.  It took a good 3 months or more for me to get my energy back.  I had not had issues with dairy before, and I do now.  In retrospect, I had no doubt that I am either celiac or gluten intolerant.  I still have no doubt and I finally realize that it doesn't matter which one it is.  The gluten free diet is the answer for both.

Good luck with your decision.On Thu, Sep 17, 2009 at 12:48 PM, <kristin_boston@...> wrote:

 

Louise,

I really don't understand why you would want to do this.  Who is " everyone " ?  Why do you care what they think?  The biopsy is unlikely to provide you with any useful information.  The only useful result would be a positive result but this is very unlikely.  Because you are mostly gluten-free your result will likely be negative.  A negative result will not be informative because you wont know if its negative because you don't have Celiac or if it's negative because you are not eating gluten.  In order for the biopsy to be effective, you need to be eating a LOT of gluten.  I was told that I would have to eat a slice of bread every day for 8 weeks before having a biopsy.  That much gluten of course would have probably killed me.  I already knew I was deathly ill when eating gluten and better when not eating it.  Why kill myself to prove it to a doctor or insurance company?   And, the

point about insurance companies is a good one.  No need to create an extra pre-existing condition for yourself.   Before doing the biopsy you should also understand that this test is invasive and carries risks of dangerous complications like perforated bowel, bleeding and infection.  Complications are rare, but the risks remain.  Why subject yourself to such risks when you have so little to gain from the test?

Second, a biopsy will NOT tell you anything about the Celiac gene. To find out which genes you have, all you need to do is a blood or saliva test.  

 

Hope this helps. 

 

 

From: Louise Audell <louise_gd@...>

Sent: Wednesday, September 16, 2009 5:37:42 PMSubject: Re: [ ] 1st Biopsy 

My doctor hasn't prescribed a biopsy, I am. I have an appointment with my Dr. next week to discuss this. I keep getting everyone telling me that there's no official diagnosis until I get one, and that we're just " guessing/estimatin g " that this is the real problem.

I've also had my first child. She's now 2. I was told they couldn't really test for the Celiac gene if they didn't know which one I had, and only a biopsy would tell me this. Also, that my daughter would need to be re-tested when she's 4 or 5 because this one might not be...I think she said...accurate, until my daughter is older.

I'm also not convinced that I've completely recovered from gluten, and that I'm eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that don't make me sick...I read labels, I use this forum, I make phone calls, etc. At this point, I'd be checking to see

if there's any damage or other problems going on in there...a colon check would be good too...as it's seemed for years that my body just won't ride itself of toxins, no matter what I do! Something's fishy.

Gotta start some place...

 Louise Audellart + designlouiseaudell. com(510) 531-4607

From: Wallace <AWallace@eastonbell sports.com>

Sent: Wednesday, September 16, 2009 3:03:00 PMSubject: RE: [ ] 1st Biopsy 

If you’ve been GF for years, a biopsy probably wont prove anything.  You have to be eating gluten for the endoscopy to see the damage.  Since you’ve been GF – the idea is that you’ve healed and there’s no damage.  So im not sure why your doc would prescribe you get one?  Anyone else?

 

Ive had 2 and also a capsule endoscopy.  No pain on my end except for a sore throat the after the first one.  I was in “twilo” anastasia.  Not painful and takes less than 5 minutes. 

 

No annual biopsy needed.  Don’t be nervous…it’s really nothing.

 

- 

 

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy

 

 

Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, things I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an " annual biopsy " . Ugh.Please advise...I'm a bit scared/nervous.Louise

 

 

__________________________________________________

[Guest guest]

The biopsy might tell you, however, if your intestine continues to be damaged and to what extent, information that could prove useful.

Also, your daughter could have a blood (or saliva) test to see if she has any of the genes for celiac. . .

T

-----Original Message-----

From: Noviello <cgnoviello@...>

Sent: Thu, Sep 17, 2009 1:03 pm

Subject: Re: [ ] 1st Biopsy

I have to agree with Lillyth. I actually did the gluten challenge - 4 slices of bread a day for 6 weeks. I was so sick I could barely function and I still had a negative biopsy. In the end, it didn't change anything for me other than to make me sick. It took a good 3 months or more for me to get my energy back. I had not had issues with dairy before, and I do now. In retrospect, I had no doubt that I am either celiac or gluten intolerant. I still have no doubt and I finally realize that it doesn't matter which one it is. The gluten free

diet is the answer for both.

Good luck with your decision.

On Thu, Sep 17, 2009 at 12:48 PM, <kristin_boston > wrote:

Louise,

I really don't understand why you would want to do this. Who is "everyone"? Why do you care what they think? The biopsy is unlikely to provide you with any useful information. The only useful result would be a positive result but this is very unlikely. Because you are mostly gluten-free your result will likely be negative. A negative result will not be informative because you wont know if its negative because you don't have Celiac or if it's negative because you are not eating gluten. In order for the biopsy to be effective, you need to be eating a LOT of gluten. I was told that I would have to eat a slice of bread every day for 8 weeks before having a biopsy. That much gluten of course would have probably killed me. I already knew I was deathly ill when eating gluten and better when not eating it. Why kill myself to20prove it to a doctor or insurance company? And, the

point about insurance companies is a good one. No need to create an extra pre-existing condition for yourself. Before doing the biopsy you should also understand that this test is invasive and carries risks of dangerous complications like perforated bowel, bleeding and infection. Complications are rare, but the risks remain. Why subject yourself to such risks when you have so little to gain from the test?

Second, a biopsy will NOT tell you anything about the Celiac gene. To find out which genes you have, all you need to do is a blood or saliva test.

Hope this helps.

From: Louise Audell <louise_gd >

Sent: Wednesday, September 16, 2009 5:37:42 PM

Subject: Re: [ ] 1st Biopsy

My doctor hasn't prescribed a biopsy, I am. I have an appointment with my Dr. next week to discuss this. I keep getting everyone telling me that there's no official diagnosis until I get one, and that we're just "guessing/estimatin g" that this is the real problem.

I've also had my first child. She's now 2. I was told they couldn't really test for the Celiac gene if they didn't know which one I had, and only a biopsy would tell me this. Also, that my daughter would need to be re-tested when she's 4 or 5 because this one might not be...I think she said...accurate, until my daughter is older.

I'm also not convinced that I've completely recovered from gluten, and that I'm eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that don't make me sick...I read labels, I use this forum, I make phone calls, etc. At this point, I'd be checking to see

if there's any damage or other problems going on in there...a colon check would be good too...as it's seemed for years that my body just won't ride itself of toxins, no matter what I do! Something's fishy.

Gotta start some place...

Louise Audell

art + design

louiseaudell. com

(510) 531-4607

From: Wallace <AWallace@eastonbell sports.com>

Sent: Wednesday, September 16, 2009 3:03:00 PM

Subject: RE: [ ] 1st Biopsy

If you’ve been GF for years, a biopsy probably wont prove anything. You have to be eating gluten for the endoscopy to see the damage. Since you’ve been GF – the idea is that you’ve healed and there’s no damage. So im not sure why your doc would prescribe you get one? Anyone else?

Ive had 2 and also a capsule endoscopy. No pain on my end except for a sore throat the after the first one. I was in “twilo†anastasia. Not painful and takes less than 5 minutes.

No annual biopsy needed. Don’t be nervous…it’s really nothing.

-

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PM

Celiac Bay Area

Subject: [ ] 1st Biopsy

Hi:

I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, things I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an "annual biopsy". Ugh.

Please advise...I'm a bit scared/nervous.

Louise

/ div>

__________________________________________________

[Guest guest]

Hello!

I am new to this group. But I dont think its worth it to gluten yourself to get a biopsy. I feel its not worth it because if it comes back negative and you think you are not celiac and go back to eating gluten again because you have now been told your not Celiac then it makes you sick again and then what?

For me it was like this in the beginning. Test after test after test and then it was... "Nothing is wrong with you, here is an antidepressant."

Well 11 years later and 20 pounds lighter and failing vision, arthritis, missed periods and my hair falling out I decide to change DRS. I get all these Celiac tests and they where positive. But I had to get so sick I nearly am dead. I found out 3 weeks ago.

Take it from me, it aint worth it. And I also think its a good thing to know if your insurance will go up with the diagnosis. Mine did. I was so bummed. And now I have all these gastroenterlogists? Is that the right way you spell it? All they say is niothing but more blood tests and your really sick Ma'am, and you need lots of vitamins an you need a supplement llol REALLY? You dont say?

It is not fun, and then all I had to do was take out Gluten. I been feeling a lot better, and my daughter is too.

Also, in my opinion, you seem to be really healthy. Try and remember how lousy you felt. lol That might make your decision for you! lol

For my daughter I went to ....www.myceliacid.com and orderd the saliva test. Its all you need. =)

Hope you dont mind my 2 cents. God bless

gem=)

Gemma ' Locatelli

"Be the change you want to see in the world!" -Gandhi

Louise,

I really don't understand why you would want to do this. Who is "everyone"? Why do you care what they think? The biopsy is unlikely to provide you with any useful information. The only useful result would be a positive result but this is very unlikely. Because you are mostly gluten-free your result will likely be negative. A negative result will not be informative because you wont know if its negative because you don't have Celiac or if it's negative because you are not eating gluten. In order for the biopsy to be effective, you need to be eating a LOT of gluten. I was told that I would have to eat a slice of bread every day for 8 weeks before having a biopsy. That much gluten of course would have probably killed me. I already knew I was deathly ill when eating gluten and better when not eating it. Why kill myself to20prove it to a doctor or insurance company? And, the

point about insurance companies is a good one. No need to create an extra pre-existing condition for yourself. Before doing the biopsy you should also understand that this test is invasive and carries risks of dangerous complications like perforated bowel, bleeding and infection. Complications are rare, but the risks remain. Why subject yourself to such risks when you have so little to gain from the test?

Second, a biopsy will NOT tell you anything about the Celiac gene. To find out which genes you have, all you need to do is a blood or saliva test.

Hope this helps.

From: Louise Audell <louise_gd (DOT) com> Sent: Wednesday, September 16, 2009 5:37:42 PM Subject: Re: [ ] 1st Biopsy

My doctor hasn't prescribed a biopsy, I am. I have an appointment with my Dr. next week to discuss this. I keep getting everyone telling me that there's no official diagnosis until I get one, and that we're just "guessing/estimatin g" that this is the real problem.I've also had my first child. She's now 2. I was told they couldn't really test for the Celiac gene if they didn't know which one I had, and only a biopsy would tell me this. Also, that my daughter would need to be re-tested when she's 4 or 5 because this one might not be...I think she said...accurate, until my daughter is older. I'm also not convinced that I've completely recovered from gluten, and that I'm eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that don't make me sick...I read labels, I use this forum, I make phone calls, etc. At this point, I'd be checking to see if there's any

damage or other problems going on in there...a colon check would be good too...as it's seemed for years that my body just won't ride itself of toxins, no matter what I do! Something's fishy.Gotta start some place...

Louise Audellart + designlouiseaudell. com(510) 531-4607

From: Wallace <AWallace@eastonbell sports.com> Sent: Wednesday, September 16, 2009 3:03:00 PM Subject: RE: [ ] 1st Biopsy

If you’ve been GF for years, a biopsy probably wont prove anything. You have to be eating gluten for the endoscopy to see the damage. Since you’ve been GF – the idea is that you’ve healed and there’s no damage. So im not sure why your doc would prescribe you get one? Anyone else?

Ive had 2 and also a capsule endoscopy. No pain on my end except for a sore throat the after the first one. I was in “twilo†anastasia. Not painful and takes less than 5 minutes.

No annual biopsy needed. Don’t be nervous…it’s really nothing.

-

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy

Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, things I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc. And, will I have to do this again? As in, have an "annual biopsy". Ugh.Please advise...I'm a bit scared/nervous.Louise

/ div>

____________ _________ _________ _________ _________ __

[Guest guest]

Good point. The biopsy examines the esophagus and stomach as well as the small intestine for damage.

H.

The biopsy might tell you, however, if your intestine continues to be damaged and to what extent, information that could prove useful.

Also, your daughter could have a blood (or saliva) test to see if she has any of the genes for celiac. . .

T

-----Original Message-----

From: TrVerb@...

Sent: Thu, Sep 17, 2009 1:10 pm

Subject: Re: [ ] 1st Biopsy

The biopsy might tell you, however, if your intestine continues to be damaged and to what extent, information that could prove useful.

Also, your daughter could have a blood (or saliva) test to see if she has any of the genes for celiac. . .

T

-----Original Message-----

From: Noviello <cgnoviellogmail>

Sent: Thu, Sep 17, 2009 1:03 pm

Subject: Re: [ ] 1st Biopsy

I have to agree with Lillyth. I actually did the gluten challenge - 4 slices of bread a day for 6 weeks. I was so sick I could barely function and I still had a negative biopsy. In the end, it didn't change anything for me other than to make me sick. It took a good 3 months or more for me to get my energy back. I had not had issues with dairy before, and I do now. In retrospect, I had no doubt that I am either celiac or gluten intolerant. I still have no doubt and I finally realize that it doesn't matter which one it is. The gluten free

diet is the answer for both.

Good luck with your decision.

On Thu, Sep 17, 2009 at 12:48 PM, <kristin_boston > wrote:

=0

A

Louise,

I really don't understand why you would want to do this. Who is "everyone"? Why do you care what they think? The biopsy is unlikely to provide you with any useful information. The only useful result would be a positive result but this is very unlikely. Because you are mostly gluten-free your result will likely be negative. A negative result will not be informative because you wont know if its negative because you don't have Celiac or if it's negative because you are not eating gluten. In order for the biopsy to be effective, you need to be eating a LOT of gluten. I was told that I would have to eat a slice of bread every day for 8 weeks before having a biopsy. That much gluten of course would have probably killed me. I already knew I was deathly ill when eating gluten and better when not eating it. Why kill myself to20prove it to a doctor or insurance company? And, the

point about insurance companies is a good one. No need to create an extra pre-existing condition for yourself. Before doing the biopsy you should also understand that this test is invasive and carries risks of dangerous complications like perforated bowel, bleeding and infection. Complications are rare, but the risks remain. Why subject yourself to such risks when you have so little to gain from the test?

Second, a biopsy will NOT tell you anything about the Celiac gene. To find out which genes you have, all you need to do is a blood or saliva test.

Hope this helps.

From: Louise Audell <louise_gd >

Sent: Wednesday, September 16, 2009 5:37:42 PM

Subject: Re: [ ] 1st Biopsy

My doctor hasn't prescribed a biopsy, I am. I have an appointment with my Dr. next week to discuss this. I keep getting everyone telling me that there's no official diagnosis until I get one, and that we

're just "guessing/estimatin g" that this is the real problem.

I've also had my first child. She's now 2. I was told they couldn't really test for the Celiac gene if they didn't know which one I had, and only a biopsy would tell me this. Also, that my daughter would need to be re-tested when she's 4 or 5 because this one might not be...I think she said...accurate, until my daughter is older.

I'm also not convinced that I've completely recovered from gluten, and that I'm eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that don't make me sick...I read labels, I use this forum, I make phone calls, etc. At this point, I'd be checking to see

if there's any damage or other problems going on in there...a colon check would be good too...as it's seemed for years that my body just won't ride itself of toxins, no matter what I do! Something's fishy.

Gotta start some place...

Louise Audell

art + design

louiseaudell. com

(510) 531-4607

From: Wallace <AWallace@eastonbell sports.com>

Sent: Wednesday, September 16, 2009 3:03:00 PM

Subject: RE: [ ] 1st Biopsy

If you’ve been GF for years, a biopsy probably wont prove anything. You have to be eating gluten for the endoscopy to see the damage. Since you’ve been GF – the idea is that you’ve healed and there’s no damage. So im not sure why your doc would prescribe you get one? Anyone else?

Ive had 2 and also a capsule endoscopy. No pain on my end except for a sore throat the after the first one. I was in “twilo†anastasia. Not painful and takes less than 5 minutes.

No annual biopsy needed. Don’t be nervous…it’s really nothing.

-

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PM

Celiac Bay Area

Subject: [ ] 1st Biopsy

Hi:

I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, things I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an "annual biopsy". Ugh.

Please advise...I'm a bit scared/nervous.

Louise

/ div>

__________________________________________________

[Guest guest]

My dr said the IgA tTG test would have been sufficient as well.

gem =)

Gemma ' Locatelli

"Be the change you want to see in the world!" -Gandhi

From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh@...>Subject: RE: [ ] 1st Biopsy Date: Thursday, September 17, 2009, 7:07 AM

I’ve heard the same thing (gluten being required for proper results) from every doc I’ve ever heard from or talked to, including ALL the docs at the Stanford Celiac Conference.

It doesn’t even make sense for it to work otherwise, if one is not consuming gluten, the antibodies trying to fight it off would not be present. That is just simple logic. I’m not sure what your doc at UCSF was thinking…

From: [mailto: ] On Behalf Of HarperSent: Wednesday, September 16, 2009 9:32 PM Subject: Re: [ ] 1st Biopsy

A couple of years ago I had an endoscopy done at UCSF, by a very high-ranking doctor there. He told me that the IgA tTG test would give reliable results even for people who weren't eating gluten. I asked him three times, as I thought I must be hearing wrong. He kept me assuring me that this is true. I haven't found any evidence to back this up. I do read that this test has a much higher degree of accuracy than other tests. I found one site that stated that "some physicians require than one eat gluten for a period of 2-4 weeks before testing." This sounds rather ambiguous -- some physicians. Everything I've read, other than that, has indicated that gluten is necessary for testing to work.H.

Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time.

-----Original Message-----From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh @comcast. net> Sent: Wed, Sep 16, 2009 9:06 pmSubject: RE: [ ] 1st Biopsy

Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time.

My advice? Don’t bother. Who really needs the diagnosis anyway?

From: [mailto: celiacbayar ea ] On Behalf Of Louise AudellSent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy

Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, th ings I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.And, will I have to do this again? As in, have an "annual biopsy". Ugh.Please advise...I'm a bit scared/nervous.Louise

[Guest guest]

Mine said same. Had a ttg count that he said showed more than 99 per cent certain of celiac disease and therefore recommended against biopsyAnother friend had negative bloodwork - for her he recomended biopsy and had quite a lot of damage. He said bloodwork have false negatives but not false positives. Others have questioned that, suggesting crohn's can trigger a positive ttg result. I asked abot this as he (Dr. Aron - some love him, some not) is also a crohn's and colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan said the same thing. From: Sent: Thu Sep 17 14:06:49 2009Subject: RE: [ ] 1st BiopsyMy dr said the IgA tTG test would have been sufficient as well. gem =) Gemma ' Locatelli "Be the change you want to see in the world!" -GandhiFrom: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh@...>Subject: RE: [ ] 1st Biopsy Date: Thursday, September 17, 2009, 7:07 AM I’ve heard the same thing (gluten being required for proper results) from every doc I’ve ever heard from or talked to, including ALL the docs at the Stanford Celiac Conference. It doesn’t even make sense for it to work otherwise, if one is not consuming gluten, the antibodies trying to fight it off would not be present. That is just simple logic. I’m not sure what your doc at UCSF was thinking… From: [mailto: ] On Behalf Of HarperSent: Wednesday, September 16, 2009 9:32 PM Subject: Re: [ ] 1st Biopsy A couple of years ago I had an endoscopy done at UCSF, by a very high-ranking doctor there. He told me that the IgA tTG test would give reliable results even for people who weren't eating gluten. I asked him three times, as I thought I must be hearing wrong. He kept me assuring me that this is true. I haven't found any evidence to back this up. I do read that this test has a much higher degree of accuracy than other tests. I found one site that stated that "some physicians require than one eat gluten for a period of 2-4 weeks before testing." This sounds rather ambiguous -- some physicians. Everything I've read, other than that, has indicated that gluten is necessary for testing to work.H.Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time. -----Original Message-----From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh @comcast. net> Sent: Wed, Sep 16, 2009 9:06 pmSubject: RE: [ ] 1st Biopsy Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time. My advice? Don’t bother. Who really needs the diagnosis anyway? From: [mailto: celiacbayar ea ] On Behalf Of Louise AudellSent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, th ings I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it painful? How long does it last? etc-etc.And, will I have to do this again? As in, have an "annual biopsy". Ugh.Please advise...I'm a bit scared/nervous.Louise

[Guest guest]

The question I have is whether the IgA tTG test would show a positive result for people with CD who haven't been eating gluten.

H.

Mine said same. Had a ttg count that he said showed more than 99 per cent certain of celiac disease and therefore recommended against biopsy

Another friend had negative bloodwork - for her he recomended biopsy and had quite a lot of damage.

He said bloodwork have false negatives but not false positives. Others have questioned that, suggesting crohn's can trigger a positive ttg result. I asked abot this as he (Dr. Aron - some love him, some not) is also a crohn's and colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan said the same thing.

From:

Sent: Thu Sep 17 14:06:49 2009

Subject: RE: [ ] 1st Biopsy

My dr said the IgA tTG test would have been sufficient as well.

-----Original Message-----

From: Bronwyn Syiek <bronwyn@...>

Sent: Thu, Sep 17, 2009 2:12 pm

Subject: Re: [ ] 1st Biopsy

Mine said same. Had a ttg count that he said showed more than 99 per cent certain of celiac disease and therefore recommended against biopsy

Another friend had negative bloodwork - for her he recomended biopsy and had quite a lot of damage.

He said bloodwork have false negatives but not false positives. Others have questioned that, suggesting crohn's can trigger a positive ttg result. I asked abot this as he (Dr. Aron - some love him, some not) is also a crohn's and colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan said the same

thing.

From:

Sent: Thu Sep 17 14:06:49 2009

Subject: RE: [ ] 1st Biopsy

My dr said the IgA tTG test would have been sufficient as well.

gem =)

Gemma ' Locatelli

"Be the change you want to see in the world!" -Gandhi

From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeoghcomcast (DOT) net>

Subject: RE: [ ] 1st Biopsy

Date: Thursday, September 17, 2009, 7:07 AM

I’ve heard the same thing (gluten being required for proper results) from every doc I’ve ever heard from or talked to, including ALL the docs at the Stanford Celiac Conference.

It doesn’t even make sense for it to work otherwise, if one is not consuming gluten, the antibodies trying to fight it off would not be present. That is just simple logic. I’m not sure what your doc at UCSF was thinking…

From: [mailto: ] On Behalf Of Harper

Sent: Wednesday, September 16, 2009 9:32 PM

Subject: Re: [ ] 1st Biopsy

A couple of years ago I had an endoscopy done at UCSF, by a very high-ranking doctor there. He told me that the IgA tTG test would give reliable results even for people who weren't eating gluten. I asked him three times, as I thought I must be hearing wrong. He kept me assuring me that this is true. I haven't found any evidence to back this up. I do read

that this test has a much higher degree of accuracy than other tests.

I found one site that stated that "some physicians require than one eat gluten for a period of 2-4 weeks before testing." This sounds rather ambiguous -- some physicians.

Everything I've read, other than that, has indicated that gluten is necessary for testing to work.

H.

Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time.

-----Original Message-----

From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh @comcast. net>

Sent: Wed, Sep 16, 2009 9:06 pm

Subject: RE: [ ] 1st Biopsy

Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time.

My advice? Don’t bother. Who really needs the diagnosis anyway?

From: [mailto: celiacbayar ea ] On Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PM

Celiac Bay Area

Subject: [ ] 1st Biopsy

Hi:

I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, th ings I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it20painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an "annual biopsy". Ugh.

Please advise...I'm a bit scared/nervous.

Louise

[Guest guest]

I think the answer to that is a resounding no, to my knowledge. From: Sent: Thu Sep 17 14:16:10 2009Subject: Re: [ ] 1st Biopsy The question I have is whether the IgA tTG test would show a positive result for people with CD who haven't been eating gluten.H.Mine said same. Had a ttg count that he said showed more than 99 per cent certain of celiac disease and therefore recommended against biopsyAnother friend had negative bloodwork - for her he recomended biopsy and had quite a lot of damage. He said bloodwork have false negatives but not false positives. Others have questioned that, suggesting crohn's can trigger a positive ttg result. I asked abot this as he (Dr. Aron - some love him, some not) is also a crohn's and colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan said the same thing. From: Sent: Thu Sep 17 14:06:49 2009Subject: RE: [ ] 1st BiopsyMy dr said the IgA tTG test would have been sufficient as well. -----Original Message-----From: Bronwyn Syiek <bronwyn@...> Sent: Thu, Sep 17, 2009 2:12 pmSubject: Re: [ ] 1st Biopsy Mine said same. Had a ttg count that he said showed more than 99 per cent certain of celiac disease and therefore recommended against biopsyAnother friend had negative bloodwork - for her he recomended biopsy and had quite a lot of damage. He said bloodwork have false negatives but not false positives. Others have questioned that, suggesting crohn's can trigger a positive ttg result. I asked abot this as he (Dr. Aron - some love him, some not) is also a crohn's and colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan said the samething. From: Sent: Thu Sep 17 14:06:49 2009Subject: RE: [ ] 1st BiopsyMy dr said the IgA tTG test would have been sufficient as well. gem =) Gemma ' Locatelli "Be the change you want to see in the world!" -GandhiFrom: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeoghcomcast (DOT) net>Subject: RE: [ ] 1st Biopsy Date: Thursday, September 17, 2009, 7:07 AM I’ve heard the same thing (gluten being required for proper results) from every doc I’ve ever heard from or talked to, including ALL the docs at the Stanford Celiac Conference. It doesn’t even make sense for it to work otherwise, if one is not consuming gluten, the antibodies trying to fight it off would not be present. That is just simple logic. I’m not sure what your doc at UCSF was thinking… From: [mailto: ] On Behalf Of HarperSent: Wednesday, September 16, 2009 9:32 PM Subject: Re: [ ] 1st Biopsy A couple of years ago I had an endoscopy done at UCSF, by a very high-ranking doctor there. He told me that the IgA tTG test would give reliable results even for people who weren't eating gluten. I asked him three times, as I thought I must be hearing wrong. He kept me assuring me that this is true. I haven't found any evidence to back this up. I do readthat this test has a much higher degree of accuracy than other tests. I found one site that stated that "some physicians require than one eat gluten for a period of 2-4 weeks before testing." This sounds rather ambiguous -- some physicians. Everything I've read, other than that, has indicated that gluten is necessary for testing to work.H.Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time. -----Original Message-----From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh @comcast. net> Sent: Wed, Sep 16, 2009 9:06 pmSubject: RE: [ ] 1st Biopsy Per Dr. Greene, when I asked him a similar question a few years back, there is NO way to get an official diagnosis through biopsy (or any other method) once you have been gluten free for that long without going back on gluten for a period of time. My advice? Don’t bother. Who really needs the diagnosis anyway? From: [mailto: celiacbayar ea ] On Behalf Of Louise AudellSent: Wednesday, September 16, 2009 2:41 PMCeliac Bay AreaSubject: [ ] 1st Biopsy Hi:I'm considering having my first biopsy for an official diagnosis for Celiac. I had the blood test done years ago, and have been living GF and somewhat diary free, all this time, but now I'd like to make the diagnosis official.I've never had a biopsy before...any tips 'n tricks from anyone who's done these? Questions to ask my doctor, th ings I should ask for before having this procedure done (like being knocked out, hah-hah!), and how does it work? Is it20painful? How long does it last? etc-etc.And, will I have to do this again? As in, have an "annual biopsy". Ugh.Please advise...I'm a bit scared/nervous.Louise

[Guest guest]

From everything I have heard, no, it would

not. Again this comes from the docs who presented at the Stanford Celiac

Conference.

From: [mailto: ] On Behalf Of Harper

Sent: Thursday, September 17, 2009

2:16 PM

Subject: Re: [ ] 1st

Biopsy

The question I have is whether the IgA tTG test would show a

positive result for people with CD who haven't been eating gluten.

H.

Mine said same. Had a ttg count that he

said showed more than 99 per cent certain of celiac disease and therefore

recommended against biopsy

Another friend had negative bloodwork - for her he recomended biopsy and had

quite a lot of damage.

He said bloodwork have false negatives but not false positives. Others have

questioned that, suggesting crohn's can trigger a positive ttg result. I asked

abot this as he (Dr. Aron - some love him, some not) is also a crohn's and

colitis specialist. He said not, he said there is no question. Dr. Uma

Mahadevan said the same thing.

From:

Sent: Thu Sep 17 14:06:49 2009

Subject: RE: [ ] 1st

Biopsy

My dr said the IgA tTG test would have been sufficient as

well.

-----Original

Message-----

From: Bronwyn Syiek <bronwynquinstreet>

Sent: Thu, Sep 17, 2009 2:12 pm

Subject: Re: [ ] 1st Biopsy

Mine said same. Had a ttg count that he said

showed more than 99 per cent certain of celiac disease and therefore

recommended against biopsy

Another friend had negative bloodwork - for her he recomended biopsy and had

quite a lot of damage.

He said bloodwork have false negatives but not false positives. Others have

questioned that, suggesting crohn's can trigger a positive ttg result. I asked

abot this as he (Dr. Aron - some love him, some not) is also a crohn's and

colitis specialist. He said not, he said there is no question. Dr. Uma Mahadevan

said the same thing.

From:

Sent: Thu Sep 17 14:06:49 2009

Subject: RE: [ ] 1st

Biopsy

My dr said the IgA tTG test would have been sufficient

as well.

gem =)

Gemma ' Locatelli

" Be the

change you want to see in the world! " -Gandhi

From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeoghcomcast (DOT) net>

Subject: RE: [ ] 1st Biopsy

Date: Thursday, September 17, 2009, 7:07 AM

I’ve heard the same thing (gluten being

required for proper results) from every doc I’ve ever heard from or talked

to, including ALL the docs at the Stanford Celiac Conference.

It doesn’t even make sense for it to

work otherwise, if one is not consuming gluten, the antibodies trying to

fight it off would not be present. That is just simple logic. I’m

not sure what your doc at UCSF was thinking…

From: @

groups. com [mailto: ] On Behalf Of Harper

Sent: Wednesday, September 16,

2009 9:32 PM

@ groups.

com

Subject: Re: [ ] 1st

Biopsy

A couple of years ago I had an endoscopy done at UCSF, by

a very high-ranking doctor there. He told me that the IgA tTG test would give reliable results

even for people who weren't eating gluten. I asked him three times, as I

thought I must be hearing wrong. He kept me assuring me that this is true. I

haven't found any evidence to back this up. I do read that this test has a

much higher degree of accuracy than other tests.

I found one site that stated that " some physicians require than one eat

gluten for a period of 2-4 weeks before testing. " This sounds rather

ambiguous -- some physicians.

Everything I've read, other than that, has indicated that gluten is necessary

for testing to work.

H.

Per Dr. Greene, when I asked him a similar

question a few years back, there is NO way to get an official diagnosis

through biopsy (or any other method) once you have been gluten free for that

long without going back on gluten

for a period of time.

-----Original Message-----

From: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh @comcast. net>

Sent: Wed, Sep 16, 2009 9:06 pm

Subject: RE: [ ] 1st Biopsy

Per Dr. Greene, when I asked him a

similar question a few years back, there is NO way to get an official

diagnosis through biopsy (or any other method) once you have been gluten free

for that long without going back on gluten

for a period of time.

My advice? Don’t bother. Who

really needs the diagnosis anyway?

From: [mailto:

celiacbayar ea ] On

Behalf Of Louise Audell

Sent: Wednesday, September 16,

2009 2:41 PM

Celiac Bay Area

Subject: [ ] 1st

Biopsy

Hi:

I'm considering having my first biopsy for an official diagnosis for Celiac.

I had the blood test done years ago, and have been living GF and somewhat

diary free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done

these? Questions to ask my doctor, th ings I should ask for before having

this procedure done (like being knocked out, hah-hah!), and how does it work?

Is it20painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an " annual biopsy " .

Ugh.

Please advise...I'm a bit scared/nervous.

Louise