Re: Dr. Gray question

[Guest guest]

I haven't been to the celiac clinic at Standford but I have a great Gastro Doc, named Aron. http://www.gut-check.com/ He is a great Dr and very knowledgeable. He even suffers from Gluten intolerance himself. He checked me out and got me on the straight and narrow. He also helps to get GF foods into Safeway, etc. You can read his credetentials on the website.Hope that helps.Melita - GF in SF

[Guest guest]

Do you know how much he charges?Melita <leftcoastmelita@...> wrote: I haven't been to the celiac clinic at Standford but I have a great Gastro Doc, named Aron. http://www.gut-check.com/ He is a great Dr and very knowledgeable. He even suffers from Gluten intolerance

himself. He checked me out and got me on the straight and narrow. He also helps to get GF foods into Safeway, etc. You can read his credetentials on the website.Hope that helps.Melita - GF in SF

[Guest guest]

Maybe I am missing something, but there's a medical protocol to diagnosing cd, and that protocol is antibody testing followed, if necessary, by biopsy. It would be great if there were a way to diagnose without having someone go back on a gluten filled diet, but unfortunately at this point there just isn't. The protocol is dependent on seeing gluten in action in the body; it can't be dependent simply on patient-reported symptoms for many reasons, one very good reason being that so many of the symptoms related to cd are also related to other disorders (some of which might be neurological, etc., not gastro-intestinal). So to ask a physician to just accept your self-diagnosis without absolute

proof is asking him or her to take a leap a good physician simply can't take. I am not saying that those of you who are self-diagnosed are wrong. But to dismiss a doctor simply because s/he needs to see medical proof seems unfair. Now, if you were to be take the genetic test for cd (a simple blood test), you might be able to convince a dr. that there is some basis in your self-diagnosis. Have any of you been offered that test?

Having said all that, believe me, I don't believe any physician is god. I've had enough of my own terrible interactions with them and worked with enough sub par med school students (I ran a med school class that taught student doctors how to talk with and listen to patients -- ha!) that I don't even believe most are any good. But I think criticism - especially about one particular individual - should be fair.

T

In a message dated 3/28/08 6:11:46 PM, megroff01@... writes:

I also had mixed feelings about Dr. Gray. My experience was similar to your description.

 

I had self-diagnosed in ’97 after a GI said IBS and I did not believe it rang true to my symptoms. I went GF and for 10 yrs had restored health and symptom free, except during ‘episodes’ due to cheating.

I went to Dr Gray in 2006 after having a reemergence of symptoms. He read the biopsies I had from ’97 but were not done of the intestine – only stomach (like I said the GI was a quack) and when Dr.Gray did the HLA I was a 3 & 7…remote possibility for celiac….so basically he could not help me further unless I was willing to go back onto wheat. I was a little put off by his ‘explanation’ that it was unlikely that I did have CD and that perhaps my symptoms were…mmm perceived to be related to gluten but maybe not proven a direct correlation. Again he suggested I try adding wheat to diet.

I have not been brave enough to do so for fear of triggering another allergy or intolerance. I just stay resolved that I am gluten intolerant and I am healthier for this diet anyway.

From: <st1>celiacba <st1>celiac <s [mailto: [mailto:<st1> [mailto:<st [m] On Behalf Of Pam Newbury

Sent: Friday, March 28, 2008 5:55 PM

<st1>celiacba <st1>celiac <s

Subject: [ ] Dr. Gray question

I have known some celiacs who have had very good experiences with Dr. Gray, others not so good.  I guess it depends on your needs and perspective.  At Stanford they like things neat and tidy with regard to diagnosis, so if you have been off gluten for a while, they want to put you on it to be sure of the diagnosis, since biopsy and blood tests would show false negatives on a GF diet.  Sadly, there doesn’t seem to be acknowledgement of the fact that for some people it simply isn’t worth suffering, not to mention the risk of triggering an associated autoimmune disease, to get a diagnosis.  Unfortunately, at Stanford, diagnosis is their game, and currently there is no diagnosis without gluten.    

If I could wish for one thing for celiacs, even more than a “cureâ€, it would be a way to diagnose the disease without needing to eat gluten.

Tom, in the interests of a kinder, gentler celiac list, next time you can’t restrain yourself, try using webdings for your expletives, please!   I totally understand the impulse, but some may be offended.    Anyone can translate if they want by going into reply mode and changing the font.

Pam

From: <st1>celiacba <st1>celiac <s [mailto: [mailto:<s [mailto:<st1>c [m] On Behalf Of

Sent: Friday, March 28, 2008 3:23 PM

<st1>celiacba <st1>celiac <s

Subject: [ ] Re:Dr. Gray question

 

My husband saw Dr. Gray over 4 years ago and I agree with Tom's assessment.

We were kept waiting over 2 hours, finally interviewed by a doctor in training, and then only spoke with Dr. Gray for a few minutes.  He did NOT want to listen or answer my husband's questions. (We did not go back and found a GI doctor close to home.)

In my opinion, Dr. Gray he should not be seeing patients.  He should stick to his research work. 

>

> I do NOT generally like to badmouth ppl, but my appt

> w/ Dr. <jackass>Gray (sorry! I can't say his name

> w/out the addition) STILL makes my blood boil, and it

> was back in '04.

>

> Having originally been dx'd as a child, in the 60s,

> AND having unBELIEVably great response to the GF diet

> I'd been on for 10+ months (prior to gf I was maybe

> months from needing institutional care), I was sure I

> made it QUITE clear I wouldn't be eating bread every

> day for a month the FIRST time he asked.

>

> Then he'd insist on it, twice more, every 10 or 15min.

>

>

> It was as if he had ZERO clue about what celiac can do

> beyond the basic GI symptoms.

>

> I think he was in it just to recruit test subjects.

> The entire 45min was infuriating and I felt he had no

> interest in actually helping me.

> Still being quite brain-fogged, I couldn't effectively

> argue w/ him, but he barely let me go through my

> symptoms & story anyway.

>

>

> Tom

>

>

> ____________ ________ ________ ________ ________ ________ ________ ________ ________

> Looking for last minute shopping deals?

> Find them fast with Search. http://tools. Find them fa Find them fas Find the Find them fa Find th

>

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[Guest guest]

I also had mixed feelings about Dr. Gray.

My experience was similar to your description.

I had self-diagnosed in ’97 after a

GI said IBS and I did not believe it rang true to my symptoms. I went GF and

for 10 yrs had restored health and symptom free, except during ‘episodes’

due to cheating.

I went to Dr Gray in 2006 after having a reemergence

of symptoms. He read the biopsies I had from ’97 but were not done of the

intestine – only stomach (like I said the GI was a quack) and when

Dr.Gray did the HLA I was a 3 & 7…remote possibility for celiac….so

basically he could not help me further unless I was willing to go back onto

wheat. I was a little put off by his ‘explanation’ that it was

unlikely that I did have CD and that perhaps my symptoms were…mmm perceived

to be related to gluten but maybe not proven a direct correlation. Again he

suggested I try adding wheat to diet.

I have not been brave enough to do so for

fear of triggering another allergy or intolerance. I just stay resolved that I

am gluten intolerant and I am healthier for this diet anyway.

From: [mailto: ] On Behalf Of Pam Newbury

Sent: Friday, March 28, 2008 5:55

PM

Subject: [ ] Dr.

Gray question

I have known some celiacs who have had very good experiences

with Dr. Gray, others not so good. I guess it depends on your needs and perspective.

At Stanford they like things neat and tidy with regard to diagnosis, so if you

have been off gluten for a while, they want to put you on it to be sure of the

diagnosis, since biopsy and blood tests would show false negatives on a GF diet.

Sadly, there doesn’t seem to be acknowledgement of the fact that for some

people it simply isn’t worth suffering, not to mention the risk of

triggering an associated autoimmune disease, to get a diagnosis.

Unfortunately, at Stanford, diagnosis is their game, and currently there

is no diagnosis without gluten.

If I could wish for one thing for celiacs, even more than a

“cure”, it would be a way to diagnose the disease without needing

to eat gluten.

Tom, in the interests of a kinder, gentler celiac list, next

time you can’t restrain yourself, try using webdings for your expletives,

please!

I totally

understand the impulse, but some may be offended. Anyone can

translate if they want by going into reply mode and changing the font.

Pam

From:

[mailto: ]

On Behalf Of

Sent: Friday, March 28, 2008 3:23

PM

Subject: [ ] Re:Dr.

Gray question

My

husband saw Dr. Gray over 4 years ago and I agree with Tom's

assessment.

We were

kept waiting over 2 hours, finally interviewed by a doctor in training, and

then only spoke with Dr. Gray for a few minutes. He did NOT want to

listen or answer my husband's questions. (We did not go back and found a GI

doctor close to home.)

In my

opinion, Dr. Gray he should not be seeing patients. He should stick to

his research work.

>

> I do NOT generally like to badmouth ppl, but my appt

> w/ Dr. <jackass>Gray (sorry! I can't say his name

> w/out the addition) STILL makes my blood boil, and it

> was back in '04.

>

> Having originally been dx'd as a child, in the 60s,

> AND having unBELIEVably great response to the GF diet

> I'd been on for 10+ months (prior to gf I was maybe

> months from needing institutional care), I was sure I

> made it QUITE clear I wouldn't be eating bread every

> day for a month the FIRST time he asked.

>

> Then he'd insist on it, twice more, every 10 or 15min.

>

>

> It was as if he had ZERO clue about what celiac can do

> beyond the basic GI symptoms.

>

> I think he was in it just to recruit test subjects.

> The entire 45min was infuriating and I felt he had no

> interest in actually helping me.

> Still being quite brain-fogged, I couldn't effectively

> argue w/ him, but he barely let me go through my

> symptoms & story anyway.

>

>

> Tom

>

>

> ____________________________________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping

>

[Guest guest]

Yes, to be fair to Dr. Gray….let me

clarify… I do understand Dr. Grays need for a wheat diet in order to

perform a biopsy, since I do know this to be the standard for a definitive diagnosis

for CD.

I was agreeing that I also was disappointed

in his lack of compassion for how hard it would be to subject myself to wheat again

when it made me so sick for years, and his inference that I don’t

understand my body enough to know a correlation between certain foods and the symptoms

that I experience.

I was commenting more about his ‘bedside

manner’ (which I also find most MD’s do lack) than his clinical expertise.

From: [mailto: ] On Behalf Of TrVerb@...

Sent: Friday, March 28, 2008 6:34

PM

Subject: Re: [ ] Dr.

Gray question

Maybe I am missing something, but there's a

medical protocol to diagnosing cd, and that protocol is antibody testing

followed, if necessary, by biopsy. It would be great if there were a way to

diagnose without having someone go back on a gluten filled diet, but

unfortunately at this point there just isn't. The protocol is dependent on

seeing gluten in action in the body; it can't be dependent simply on

patient-reported symptoms for many reasons, one very good reason being

that so many of the symptoms related to cd are also related to other disorders

(some of which might be neurological, etc., not gastro-intestinal). So to

ask a physician to just accept your self-diagnosis without absolute

proof is asking him or her to take a leap a good physician simply can't take. I

am not saying that those of you who are self-diagnosed are wrong. But to

dismiss a doctor simply because s/he needs to see medical proof seems unfair.

Now, if you were to be take the genetic test for cd (a simple blood test), you

might be able to convince a dr. that there is some basis in your

self-diagnosis. Have any of you been offered that test?

Having said all that, believe me, I don't believe any physician is god. I've

had enough of my own terrible interactions with them and worked with enough sub

par med school students (I ran a med school class that taught student doctors

how to talk with and listen to patients -- ha!) that I don't even believe most

are any good. But I think criticism - especially about one particular

individual - should be fair.

T

In a message dated 3/28/08 6:11:46 PM, megroff01comcast (DOT) net writes:

I also had mixed

feelings about Dr. Gray. My experience was similar to your description.

I had self-diagnosed in

’97 after a GI said IBS and I did not believe it rang true to my

symptoms. I went GF and for 10 yrs had restored health and symptom free, except

during ‘episodes’ due to cheating.

I went to Dr Gray in

2006 after having a reemergence of symptoms. He read the biopsies I had from

’97 but were not done of the intestine – only stomach (like I said

the GI was a quack) and when Dr.Gray did the HLA I was a 3 & 7…remote

possibility for celiac….so basically he could not help me further unless

I was willing to go back onto wheat. I was a little put off by his

‘explanation’ that it was unlikely that I did have CD and that

perhaps my symptoms were…mmm perceived to be related to gluten but maybe

not proven a direct correlation. Again he suggested I try adding wheat to diet.

I have not been brave

enough to do so for fear of triggering another allergy or intolerance. I just

stay resolved that I am gluten intolerant and I am healthier for this diet

anyway.

From: <st1>celiacba <st1>celiac <s [mailto:

[mailto:<st1> [mailto:<st [m] On

Behalf Of Pam Newbury

Sent: Friday, March 28, 2008 5:55

PM

<st1>celiacba

<st1>celiac <s

Subject: [ ] Dr.

Gray question

I have known some celiacs who have had very good

experiences with Dr. Gray, others not so good. I guess it depends on your

needs and perspective. At Stanford they like things neat and tidy with

regard to diagnosis, so if you have been off gluten for a while, they want to

put you on it to be sure of the diagnosis, since biopsy and blood tests would

show false negatives on a GF diet. Sadly, there doesn’t seem to be

acknowledgement of the fact that for some people it simply isn’t worth

suffering, not to mention the risk of triggering an associated autoimmune

disease, to get a diagnosis. Unfortunately, at Stanford, diagnosis is

their game, and currently there is no diagnosis without gluten.

If I could wish for one thing for celiacs, even more than

a “cure”, it would be a way to diagnose the disease without needing

to eat gluten.

Tom, in the interests of a kinder, gentler celiac list,

next time you can’t restrain yourself, try using webdings for your

expletives, please! I totally understand the impulse, but some may be

offended.

Anyone can translate if they want by going into reply mode

and changing the font.

Pam

From: <st1>celiacba <st1>celiac <s

[mailto: [mailto:<s [mailto:<st1>c [m] On Behalf Of

Sent: Friday, March 28, 2008 3:23

PM

<st1>celiacba

<st1>celiac <s

Subject: [ ] Re:Dr.

Gray question

My

husband saw Dr. Gray over 4 years ago and I agree with Tom's

assessment.

We were

kept waiting over 2 hours, finally interviewed by a doctor in training, and

then only spoke with Dr. Gray for a few minutes. He did NOT want to

listen or answer my husband's questions. (We did not go back and found a

GI doctor close to home.)

In my

opinion, Dr. Gray he should not be seeing patients. He should stick to

his research work.

--- In

--- In <st1>ce--- In <st1>---, HiDee HoMan <hideehoman@.hi>

wrote:

>

> I do NOT generally like to badmouth ppl, but my appt

> w/ Dr. <jackass>Gray (sorry! I can't say his name

> w/out the addition) STILL makes my blood boil, and it

> was back in '04.

>

> Having originally been dx'd as a child, in the 60s,

> AND having unBELIEVably great response to the GF diet

> I'd been on for 10+ months (prior to gf I was maybe

> months from needing institutional care), I was sure I

> made it QUITE clear I wouldn't be eating bread every

> day for a month the FIRST time he asked.

>

> Then he'd insist on it, twice more, every 10 or 15min.

>

>

> It was as if he had ZERO clue about what celiac can do

> beyond the basic GI symptoms.

>

> I think he was in it just to recruit test subjects.

> The entire 45min was infuriating and I felt he had no

> interest in actually helping me.

> Still being quite brain-fogged, I couldn't effectively

> argue w/ him, but he barely let me go through my

> symptoms & story anyway.

>

>

> Tom

>

>

> ____________ ________ ________ ________ ________ ________ ________

________ ________

> Looking for last minute shopping deals?

> Find them fast with Search. http://tools. Find them fa Find them

fas Find the Find them fa Find th

>

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Joint?

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Search Ads

Get

new customers.

List your web site

in Search.

..

**************

Create a Home Theater Like the Pros. Watch the video on AOL Home.

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[Guest guest]

I was dx'd as toddler in the 60s and wasn't seeing Dr

Gray for a diagnosis. I'd hoped to get advice on what

I should do next, since I was still very ill - tho

nowhere NEAR how I was pre-gf.

I barely scratched the surface of how I was treated by

him.

Also, both the endoscopy & blood tests are woefully

inaccurate. There are numerous studies proving this.

Just last week, a study was published on the

effectiveness of the PillCam.

An endoscopy caught only 55% of the celiacs w/ villous

atrophy that was seen w/ the PillCam. They don't go

far enough in, and the samples are simply hit or miss

w/ an endoscopy.

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