RE: Testing for CD or Gluten intolerance

[Guest guest]

How do people normally get tested for CD?

It probably varies. I was malnourished,

extremely anemic. My doc took one look at my bloodwork and based on the antibodies

said “I think you have celiac disease” – I went for an endoscopy and it

confirmed it…I had no villi and lots of “scalloping”

From: [mailto: ] On Behalf Of Gretchen

Sent: Thursday, September 11, 2008

10:37 AM

Subject: [ ] Testing for

CD or Gluten intolerance

so i am having a

stigmascopy done this monday and am very nervous...I have asked my doctor to

test me for gluten intolerance and celiac disease...hes hesitant to test me

for CD because he says i am not malnourished...my blood work and stool

samples have come back ok, so will this endoscopy be able to recognize

anything? How do people normally get tested for CD?

[Guest guest]

Hey Gretchen,

I’m just gonna jump right in here

because I know you & your situation.

I’m not sure what a stigmascopy is,

but I do know that you have been GF for a while, in which case, don’t

expect him to find anything.

When I went into my colonoscopy, I had

already been GF for almost a year, and they didn’t find anything.

If you are already GF and have been for a

while, there is virtually no test that will tell you you are a celiac.

The celiac’s body only responds in a negative way when gluten is

ingested. The absence of antibodies in the bloodstream when you are not

eating gluten means nothing. All it means is that you have no exposure to

gluten. Like testing a non-drinker’s blood alcohol level. It

will come back negative because it’s not there to begin with. (Not

the best analogy, but it’s what I got at the moment) ;-)

You have been GF for a while now &

already know you cannot tolerate it – why the sudden desire to be tested?

Quite honestly, the only way for you to be

tested it for you to start consuming massive amounts of gluten, then go get a

colonoscopy. From what I know of you, there is no way you would make it

through the minimum of one month required gluten consumption. We’re

talking three sandwiches a day on wheat bread here…

Chances are, with the amount of time you’ve

been GF, your colonoscopy will come back clean.

You can always email me privately if you

want, too.

Lilly

From: [mailto: ] On Behalf Of Gretchen

Sent: Thursday, September 11, 2008

10:37 AM

Subject: [ ] Testing

for CD or Gluten intolerance

so i am having a

stigmascopy done this monday and am very nervous...I have asked my doctor to

test me for gluten intolerance and celiac disease...hes hesitant to test me

for CD because he says i am not malnourished...my blood work and stool

samples have come back ok, so will this endoscopy be able to recognize

anything? How do people normally get tested for CD?

Gee Zee Cakes

" Our deepest fear is not that we are

inadequate. Our deepest fear is that we are powerful beyond measure. It is

our light, not our darkness that frightens us. We ask ourselves, who am I to

be brilliant, gorgeous, talented and fabulous? Actually, who are you not to

be?... From nne on - " Return to Love "

--- On Thu, 9/11/08, Wallace <AWallaceeastonbellsports>

wrote:

From: Wallace

<AWallaceeastonbellsports>

Subject: RE: [ ] Continuing symptoms

Date: Thursday, September 11, 2008, 9:54 AM

–

I probably took me 3 years to feel like I figured it out.

This month marks my 4th year of being diagnosed a Celiac.

Over those first 3 years it was a lot of trial and error! I went

through phases of cutting out dairy then bringing it back, not eating

shellfish or nuts, then bringing them back, I even went vegan for a year b/c

I wanted to start with the basics. I am now peanut free, soy free, corn

free (and of course wheat/gluten free.) I don’t eat meat or

chicken or shellfish. I do eat eggs and fish. And as for nuts, I

can only tolerate almonds and walnuts. Regarding dairy I eat lactose

free or a lot of yogurt products and do well with most cheese. I

don’t touch milk as a drink or in cereal and don’t go near ice

cream, but I can tolerate a little half-n-half in coffee or frozen

yogurt. I even figured out that blue dye in foods irritated me.

It sounds overwhelming, but I just would take note when I would feel the

worst and played around until I found something that worked. I finally

feel good, I avoid processed foods as much as possible and eat organic, it

works for me. I’m sure each of us has regimens that taper to our

own needs.

I think the thing that helped me the most was understanding

CC. I have my own set of pots and pans (the household I live in is not

GF, im the only one) and I constantly wipe down counters at home, work or a

friends house. I don’t frequent many restaurants (I also got the

sickest after a bite out to eat.)

I hope you feel better or figure out what is making you feel ill!

-

From:

[mailto: ] On

Behalf Of

Sent: Thursday, September 11,

2008 12:02 AM

@ groups.

com

Subject: [ ]

Continuing symptoms

I was diagnosed

with celiac in December of 2006. After almost 20 months on a gluten

free diet, I have to admit I don't feel a whole lot better than I did before

my diagnosis. I certainly haven't experienced the dramatic changes that

a lot of other celiacs have described. In fact, I'm starting to suspect

a mis-diagnosis. I was curious if anyone else has had a similar

experience. Have any of you found cutting other foods out of your diet

in addition to gluten helped bring about a dramatic change in how you feel?

--

Groovy Squared

E-mail: keith@groovysquared

..com

Mobile :

(650)799-2665

[Guest guest]

Not all celiacs are malnourished before going gluten-free. That was not my case at all. But I agree that the only way for your bloodwork or endoscopy to come back positive for CD is if you have been ingesting gluten. If you have been off it for a while, then most likely they will not find anything. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Viviana Acevedo-Bolton

Stanford University

Civil and Environmental Engineering

vivianaa@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"los hermanos sean unidos, esa es la ley primera, que sino los devoran los de afuera..."

~ FierroFrom: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh@...>Subject: RE: [ ] Testing for CD or Gluten intolerance Date: Thursday, September 11, 2008, 11:34 AM

Hey Gretchen, I’m just gonna jump right in here

because I know you & your situation. I’m not sure what a stigmascopy is,

but I do know that you have been GF for a while, in which case, don’t

expect him to find anything. When I went into my colonoscopy, I had

already been GF for almost a year, and they didn’t find anything. If you are already GF and have been for a

while, there is virtually no test that will tell you you are a celiac.

The celiac’s body only responds in a negative way when gluten is

ingested. The absence of antibodies in the bloodstream when you are not

eating gluten means nothing. All it means is that you have no exposure to

gluten. Like testing a non-drinker’s blood alcohol level. It

will come back negative because it’s not there to begin with. (Not

the best analogy, but it’s what I got at the moment) ;-) You have been GF for a while now &

already know you cannot tolerate it – why the sudden desire to be tested? Quite honestly, the only way for you to be

tested it for you to start consuming massive amounts of gluten, then go get a

colonoscopy. From what I know of you, there is no way you would make it

through the minimum of one month required gluten consumption. We’re

talking three sandwiches a day on wheat bread here… Chances are, with the amount of time you’ve

been GF, your colonoscopy will come back clean. You can always email me privately if you

want, too. Lilly

From: [mailto: ] On Behalf Of Gretchen

Sent: Thursday, September 11, 2008

10:37 AM

Subject: [ ] Testing

for CD or Gluten intolerance

so i am having a

stigmascopy done this monday and am very nervous...I have asked my doctor to

test me for gluten intolerance and celiac disease...hes hesitant to test me

for CD because he says i am not malnourished. ..my blood work and stool

samples have come back ok, so will this endoscopy be able to recognize

anything? How do people normally get tested for CD?

Gee Zee Cakes

"Our deepest fear is not that we are

inadequate. Our deepest fear is that we are powerful beyond measure. It is

our light, not our darkness that frightens us. We ask ourselves, who am I to

be brilliant, gorgeous, talented and fabulous? Actually, who are you not to

be?... From nne on - "Return to Love"

--- On Thu, 9/11/08, Wallace <AWallace@eastonbell sports.com>

wrote: From: Wallace

<AWallace@eastonbell sports.com>

Subject: RE: [ ] Continuing symptoms

Date: Thursday, September 11, 2008, 9:54 AM

–

I probably took me 3 years to feel like I figured it out.

This month marks my 4th year of being diagnosed a Celiac.

Over those first 3 years it was a lot of trial and error! I went

through phases of cutting out dairy then bringing it back, not eating

shellfish or nuts, then bringing them back, I even went vegan for a year b/c

I wanted to start with the basics. I am now peanut free, soy free, corn

free (and of course wheat/gluten free.) I don’t eat meat or

chicken or shellfish. I do eat eggs and fish. And as for nuts, I

can only tolerate almonds and walnuts. Regarding dairy I eat lactose

free or a lot of yogurt products and do well with most cheese. I

don’t touch milk as a drink or in cereal and don’t go near ice

cream, but I can tolerate a little half-n-half in coffee or frozen

yogurt. I even figured out that blue dye in foods irritated me.

It sounds overwhelming, but I just would take note when I would feel the

worst and played around until I found something that worked. I finally

feel good, I avoid processed foods as much as possible and eat organic, it

works for me. I’m sure each of us has regimens that taper to our

own needs.

I think the thing that helped me the most was understanding

CC. I have my own set of pots and pans (the household I live in is not

GF, im the only one) and I constantly wipe down counters at home, work or a

friends house. I don’t frequent many restaurants (I also got the

sickest after a bite out to eat.) I hope you feel better or figure out what is making you feel ill!

-

From:

[mailto: ] On

Behalf Of

Sent: Thursday, September 11,

2008 12:02 AM

@ groups.

com

Subject: [ ]

Continuing symptoms

I was diagnosed

with celiac in December of 2006. After almost 20 months on a gluten

free diet, I have to admit I don't feel a whole lot better than I did before

my diagnosis. I certainly haven't experienced the dramatic changes that

a lot of other celiacs have described. In fact, I'm starting to suspect

a mis-diagnosis. I was curious if anyone else has had a similar

experience. Have any of you found cutting other foods out of your diet

in addition to gluten helped bring about a dramatic change in how you feel?

--

Groovy Squared

E-mail: keith@groovysquared

..com

Mobile :

(650)799-2665

[Guest guest]

Did he name the test that is so inaccurate? This sounds quite high.

H.

In a message dated 9/11/08 7:54:38 PM, redchickn@... writes:

Also, my GI doc, Dr. Hargrave in Oakland, told me recently that the blood test for CD is a false negative 50 percent of the time. Not sure where he got that statistic but it's pretty interesting if it's even remotely correct.Theblood testis never a false positive, he said, but 50 percent of the time it doesn't detect people who do have the disease. You might want to mention that statistic to your doctor, if you don't find out what you need with this procedure.

L¢®

**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Also, my GI doc, Dr. Hargrave in Oakland, told me recently that the blood test for CD is a false negative 50 percent of the time. Not sure where he got that statistic but it's pretty interesting if it's even remotely correct. The blood test is never a false positive, he said, but 50 percent of the time it doesn't detect people who do have the disease. You might want to mention that statistic to your doctor, if you don't find out what you need with this procedure. L²

[Guest guest]

Actually it sounds like the doc was either talking about an outdated and

inappropriate test, or just plain wrong. I heard a celiac specialist speak

recently, and the currently reccomended tests he described rate in the high 80's

to 90's percentile for accuracy.

Maureen

> From: flatcat9@... <flatcat9@...>

> Subject: Re: [ ] Re: Testing for CD or Gluten intolerance

>

> Date: Thursday, September 11, 2008, 8:05 PM

> Did he name the test that is so inaccurate? This sounds

> quite high.

> H.

>

> In a message dated 9/11/08 7:54:38 PM, redchickn@...

> writes:

>

>

> >

> > Also, my GI doc, Dr. Hargrave in Oakland, told me

> recently that the blood

> > test for CD is a false negative 50 percent of the

> time. Not sure where he got

> > that statistic but it's pretty interesting if

> it's even remotely

> > correct.Theblood testis never a false positive, he

> said, but 50 percent of the time it

> > doesn't detect people who do have the disease. You

> might want to mention that

> > statistic to your doctor, if you don't find out

> what you need with this

> > procedure.

> >

> > L〓

> >

> >

>

>

>

>

> **************

> Psssst...Have you heard the news? There's a new fashion

> blog,

> plus the latest fall trends and hair styles at

> StyleList.com.

>

> (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

I think Dr. Hargrave was just referring to the blood test for antibodies - but

which antibodies (I know some labs vary) I'm not sure.

L²

[Guest guest]

I have a link to a study that found one test with up to around 40%

false negative with confirmed biopsy celiac patients. I'll forward

later after I look it up.

On 9/11/08, Linden <redchickn@...> wrote:

> Also, my GI doc, Dr. Hargrave in Oakland, told me recently that the blood

> test for CD is a false negative 50 percent of the time. Not sure where he

> got that statistic but it's pretty interesting if it's even remotely

> correct. The blood test is never a false positive, he said, but 50 percent

> of the time it doesn't detect people who do have the disease. You might want

> to mention that statistic to your doctor, if you don't find out what you

> need with this procedure.

>

> L²

>

>

>

--

Sent from my mobile device

[Guest guest]

Here is a letter to the editor I wrote to the East Bay Express after

they published " Sliced Dread " last year that refers to study that

backs up your doctor's statistic closely:

" Great article but there is one major inaccuracy. The article states:

" Actually getting a diagnosis is fairly straightforward. A blood test

taken when the patient is on a gluten-containing diet checks for the

presence of antibodies. ... " Unfortunately, there are several antibody

tests and many tests show false negatives (as high as 40%, maybe

more). This results in someone who might have celiac disease or be

gluten intolerant taking just one blood test, getting back a negative

result, and assuming they don't have it, when in fact they may. See

the following for more information: " ...commercial assays for

celiac-related antibodies are not standardized and that reliance on

antibody testing, particularly in those with only partial villous

atrophy, could result in many missed diagnoses... " Antibody Testing

for Celiac Disease

http://gastroenterology.jwatch.org/cgi/content/full/2006/714/1?eaf "

On Fri, Sep 12, 2008 at 7:00 PM, Luther <l@...> wrote:

> I have a link to a study that found one test with up to around 40%

> false negative with confirmed biopsy celiac patients. I'll forward

> later after I look it up.

>

> On 9/11/08, Linden <redchickn@...> wrote:

>> Also, my GI doc, Dr. Hargrave in Oakland, told me recently that the blood

>> test for CD is a false negative 50 percent of the time. Not sure where he

>> got that statistic but it's pretty interesting if it's even remotely

>> correct. The blood test is never a false positive, he said, but 50 percent

>> of the time it doesn't detect people who do have the disease. You might want

>> to mention that statistic to your doctor, if you don't find out what you

>> need with this procedure.

>>

>> L²

>>

>>

>>

>

> --

> Sent from my mobile device

>