Re: Re: Dr. Gray question

[Guest guest]

I have a similar situation, also having been dx'd as an infant due to failure to thrive--though later on I was re-introduced to grains when I was four. Amazingly it was only recently my mother told me about the dx to wheat etc. when I was put into isolation as an infant despite all my troubles over the years...I don't much look forward to talking with someone at the local county hospital about all this however I figure I should just in case anything serious ever happens to me. I pray I can find at least a somewhat kindred soul. I too have had really bad experiences with doctors in general--and just had to take my health into my own hands... But there are some here who somehow have hacked their way through and gotten proper treatment (or at least recognition) by the medical establishment. It can thus happen with persistence it seems...and I guess a good sense of proportion and positive attitude really helps. I hear psychiatrists are actually quicker to

get on board than many others... They really aren't out to get us. They just don't get it. Their whole medical training pits them against this awareness it seems. Celiac without a doubt reminds them of the 19th Century with Intestinal Distress, Ricketts and Beri-Beri made famous and all those "quack" herbal remedies--which unfortunately for us turns out to actually apply positively to our situation. BeaT <hideehoman@...> wrote: 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. __________________________________________________________ Special deal for users & friends - No Cost. Get a month of Blockbuster Total Access now http://tc.deals./tc/blockbuster/text3.com

[Guest guest]

In response to your last paragraph, I had

my second upper endoscopy 2 years after I was diagnosed (because I still wasn’t

feeling well.) That endoscopy showed no damage, however my doctor wanted

to further see what was wrong and had me do the pill cam. With that she

was able to see spots further along the way where damage was still prevalent

and I basically went on an elimination diet (was a GF Vegan for 1 year) and was

able to figure out what else was effecting me and putting a stop to the gluten

that was sneaking into my diet that I wasn’t aware of…so yes, both

endoscopy and blood tests can be inaccurate.

-

From: [mailto: ] On Behalf Of T

Sent: Saturday, March 29, 2008

7:42 PM

Subject: [ ] Re: Dr.

Gray question

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.

__________________________________________________________

Special deal for users & friends - No Cost. Get a month of

Blockbuster Total Access now

http://tc.deals./tc/blockbuster/text3.com

[Guest guest]

To further clarify the meaning of "inaccurate" as you're using it --

I believe it's not possible to have a false positive, in other words if the antibodies are very high and the damage is seen on biopsy, then you DO have CD. So positive results are always accurate.

What I think you're saying is that there can be false negatives, meaning that antibody tests may be low and no damage may be seen, but the patient may still have CD, right? So when you say "inaccurate", you mean false negative results. Is that the case?

Thanks,

From: [mailto: ] On Behalf Of WallaceSent: Monday, March 31, 2008 11:10 AM Subject: RE: [ ] Re: Dr. Gray question

In response to your last paragraph, I had my second upper endoscopy 2 years after I was diagnosed (because I still wasn’t feeling well.) That endoscopy showed no damage, however my doctor wanted to further see what was wrong and had me do the pill cam. With that she was able to see spots further along the way where damage was still prevalent and I basically went on an elimination diet (was a GF Vegan for 1 year) and was able to figure out what else was effecting me and putting a stop to the gluten that was sneaking into my diet that I wasn’t aware of…so yes, both endoscopy and blood tests can be inaccurate.

-

From: [mailto: ] On Behalf Of TSent: Saturday, March 29, 2008 7:42 PM Subject: [ ] Re: Dr. Gray question

I was dx'd as toddler in the 60s and wasn't seeing DrGray for a diagnosis. I'd hoped to get advice on whatI should do next, since I was still very ill - thonowhere NEAR how I was pre-gf.I barely scratched the surface of how I was treated byhim.Also, both the endoscopy & blood tests are woefullyinaccurate. There are numerous studies proving this.Just last week, a study was published on theeffectiveness of the PillCam. An endoscopy caught only 55% of the celiacs w/ villousatrophy that was seen w/ the PillCam. They don't gofar enough in, and the samples are simply hit or missw/ an endoscopy.

..

[Guest guest]

Yes, I meant false negative.

From: [mailto: ] On Behalf Of D Darcy

Sent: Monday, March 31, 2008 3:53

PM

Subject: RE: [ ] Re:

Dr. Gray question

To further clarify the meaning of

" inaccurate " as you're using it --

I believe it's not possible to have a

false positive, in other words if the antibodies are very high and the damage

is seen on biopsy, then you DO have CD. So positive results are always

accurate.

What I think you're saying is that

there can be false negatives, meaning that antibody tests may be low

and no damage may be seen, but the patient may still have CD, right? So when

you say " inaccurate " , you mean false negative results. Is that

the case?

Thanks,

From: [mailto: ] On Behalf Of

Wallace

Sent: Monday, March 31, 2008 11:10

AM

Subject: RE: [ ] Re:

Dr. Gray question

In response to your last paragraph, I had my second upper endoscopy

2 years after I was diagnosed (because I still wasn’t feeling well.)

That endoscopy showed no damage, however my doctor wanted to further see

what was wrong and had me do the pill cam. With that she was able to see

spots further along the way where damage was still prevalent and I basically

went on an elimination diet (was a GF Vegan for 1 year) and was able to figure

out what else was effecting me and putting a stop to the gluten that was

sneaking into my diet that I wasn’t aware of…so yes, both endoscopy

and blood tests can be inaccurate.

-

From:

[mailto: ]

On Behalf Of T

Sent: Saturday, March 29, 2008

7:42 PM

Subject: [ ] Re: Dr.

Gray question

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.

..