Gene testing and Dr. Gray

[Guest guest]

Awhile back I posted a question asking for feedback on Dr. Gray at

Stanford. I saw

him this week so I thought I'd share my experience, and I have a follow-up

question I was

hoping you more experienced members might be able to answer.

So I was a little nervous going in to see Dr. Gray b/c of all the negative

feedback I had

read, but I have to say that I had a very good experience with him. I found him

very

personable and thorough, and he took time to listen to my experiences and give

me

feedback.

I had already been diagnosed with CD by my regular GI based on elevated

antibodies and

an endoscopy, though my GI said my endoscopy was unusual and didn't show typical

symptoms associated with CD. Still she felt confident enough to diagnose me and

I have

been gluten free for 2 months. I feel soooo much better since going off of

gluten!

So next comes my question...b/c my biopsy was unusual (none of my villi were

flattened

and the damage was in my lower intestine) Dr. Gray was not as comfortable saying

100%

that I have CD. He did say with the antibodies being elevated and my symptoms

disappearing the signs seem to point to that, but just to be sure had me do a

gene test,

along with tests to check my vitamin levels.

So if a gene test can determine with 100% accuracy if you have CD or not, why is

it not the

first test run? I am wondering why my main GI didn't order that test. Is the

gene test

something that isn't done often? Is it possible to have a negative gene test but

still have

CD? Has anyone gone to see Dr. Gray with elevated antibodies and CD symptoms but

come

back with a negative gene test?

Sorry for the long post but I am just confused about this all.

Thanks,

Kate

[Guest guest]

If the gene test comes back negative, the thinking would be that its

not possible for you to get CD. However, I believe there are now

documented cases of folks with CD without the gene, so take that for

its worth.

Also I have heard that the biopsies can come back negative often

because the damage may be farther in and it is difficult to get far

into the small intestine.

But hey, I'm no doctor and this is second hand info.

On 5/7/08, misswelch02 <homekew@...> wrote:

> Awhile back I posted a question asking for feedback on Dr. Gray at

> Stanford. I saw

> him this week so I thought I'd share my experience, and I have a follow-up

> question I was

> hoping you more experienced members might be able to answer.

>

> So I was a little nervous going in to see Dr. Gray b/c of all the negative

> feedback I had

> read, but I have to say that I had a very good experience with him. I found

> him very

> personable and thorough, and he took time to listen to my experiences and

> give me

> feedback.

>

> I had already been diagnosed with CD by my regular GI based on elevated

> antibodies and

> an endoscopy, though my GI said my endoscopy was unusual and didn't show

> typical

> symptoms associated with CD. Still she felt confident enough to diagnose me

> and I have

> been gluten free for 2 months. I feel soooo much better since going off of

> gluten!

>

> So next comes my question...b/c my biopsy was unusual (none of my villi were

> flattened

> and the damage was in my lower intestine) Dr. Gray was not as comfortable

> saying 100%

> that I have CD. He did say with the antibodies being elevated and my

> symptoms

> disappearing the signs seem to point to that, but just to be sure had me do

> a gene test,

> along with tests to check my vitamin levels.

>

> So if a gene test can determine with 100% accuracy if you have CD or not,

> why is it not the

> first test run? I am wondering why my main GI didn't order that test. Is the

> gene test

> something that isn't done often? Is it possible to have a negative gene test

> but still have

> CD? Has anyone gone to see Dr. Gray with elevated antibodies and CD symptoms

> but come

> back with a negative gene test?

>

> Sorry for the long post but I am just confused about this all.

>

> Thanks,

> Kate

>

>

>

>

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