Prometheus

[Guest guest]

I saw this mentioned in a post on Monday. I'm guessing this is a lab?

Is there a way to find their locations? Do doctors often allow you

to pick your own labs? Can I just ask the GI doc in March to have my

son genetically tested? Is the genetic testing conclusive?

Thanks.

Sara

Mom to Stanley(normal--they tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

The website is www.prometheuslabs.com .

You can go to the site and request free test kits to be sent to your

home. They include a doctor’s order slip. You ask your doc to

sign and Prometheus can tell you the names of labs in your area that will draw

the blood and mail in the kit.

It is my understanding that the tests for

celiac are not simply a matter of running blood thru a machine. Some part

of it requires a human to evaluate and make a judgement call. Prometheus

has a reputation for being more experienced and more accurate in these celiac

panels. The local labs in my area – quest and labcorp – have a

high number of false negatives. The positives you can trust – but a

negative could result from an inexperienced evaluation.

Not all insurance companies will cover it

if they are out of network. Mine does cover it and it was actually

considerably cheaper than the panel done locally. If your doc is not

familiar with Prometheus you might have to convince them – the folks at

the lab are very helpful and I do recommend talking to them. We had the 5

test celiac panel done at diagnosis and then have a yearly check of just the

antigliadin iga and the ttg to be sure we are sticking to the diet as well as

we think we are!

I have not had the gene testing done but

it is my understanding that having the gene means only that you MAY develop CD –

it is not conclusive for diagnosis. It is possible to have the gene but

not the disease.

Becky

From: SillyYaks [mailto:SillyYaks ] On Behalf Of heerhomestead

Sent: Thursday, January 19, 2006

10:00 AM

To: SillyYaks

Subject: Prometheus

I saw this mentioned in a

post on Monday. I'm guessing this is a lab?

Is there a way to find their locations? Do

doctors often allow you

to pick your own labs? Can I just ask the GI

doc in March to have my

son genetically tested? Is the genetic

testing conclusive?

Thanks.

Sara

Mom to Stanley(normal--they

tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

The website is www.prometheuslabs.com .

You can go to the site and request free test kits to be sent to your

home. They include a doctor’s order slip. You ask your doc to

sign and Prometheus can tell you the names of labs in your area that will draw

the blood and mail in the kit.

It is my understanding that the tests for

celiac are not simply a matter of running blood thru a machine. Some part

of it requires a human to evaluate and make a judgement call. Prometheus

has a reputation for being more experienced and more accurate in these celiac

panels. The local labs in my area – quest and labcorp – have a

high number of false negatives. The positives you can trust – but a

negative could result from an inexperienced evaluation.

Not all insurance companies will cover it

if they are out of network. Mine does cover it and it was actually

considerably cheaper than the panel done locally. If your doc is not

familiar with Prometheus you might have to convince them – the folks at

the lab are very helpful and I do recommend talking to them. We had the 5

test celiac panel done at diagnosis and then have a yearly check of just the

antigliadin iga and the ttg to be sure we are sticking to the diet as well as

we think we are!

I have not had the gene testing done but

it is my understanding that having the gene means only that you MAY develop CD –

it is not conclusive for diagnosis. It is possible to have the gene but

not the disease.

Becky

From: SillyYaks [mailto:SillyYaks ] On Behalf Of heerhomestead

Sent: Thursday, January 19, 2006

10:00 AM

To: SillyYaks

Subject: Prometheus

I saw this mentioned in a

post on Monday. I'm guessing this is a lab?

Is there a way to find their locations? Do

doctors often allow you

to pick your own labs? Can I just ask the GI

doc in March to have my

son genetically tested? Is the genetic

testing conclusive?

Thanks.

Sara

Mom to Stanley(normal--they

tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

The website is www.prometheuslabs.com .

You can go to the site and request free test kits to be sent to your

home. They include a doctor’s order slip. You ask your doc to

sign and Prometheus can tell you the names of labs in your area that will draw

the blood and mail in the kit.

It is my understanding that the tests for

celiac are not simply a matter of running blood thru a machine. Some part

of it requires a human to evaluate and make a judgement call. Prometheus

has a reputation for being more experienced and more accurate in these celiac

panels. The local labs in my area – quest and labcorp – have a

high number of false negatives. The positives you can trust – but a

negative could result from an inexperienced evaluation.

Not all insurance companies will cover it

if they are out of network. Mine does cover it and it was actually

considerably cheaper than the panel done locally. If your doc is not

familiar with Prometheus you might have to convince them – the folks at

the lab are very helpful and I do recommend talking to them. We had the 5

test celiac panel done at diagnosis and then have a yearly check of just the

antigliadin iga and the ttg to be sure we are sticking to the diet as well as

we think we are!

I have not had the gene testing done but

it is my understanding that having the gene means only that you MAY develop CD –

it is not conclusive for diagnosis. It is possible to have the gene but

not the disease.

Becky

From: SillyYaks [mailto:SillyYaks ] On Behalf Of heerhomestead

Sent: Thursday, January 19, 2006

10:00 AM

To: SillyYaks

Subject: Prometheus

I saw this mentioned in a

post on Monday. I'm guessing this is a lab?

Is there a way to find their locations? Do

doctors often allow you

to pick your own labs? Can I just ask the GI

doc in March to have my

son genetically tested? Is the genetic

testing conclusive?

Thanks.

Sara

Mom to Stanley(normal--they

tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

I think that was my post...Yes, Prometheus is a lab that specializes in this sort of testing. I believe their machines are more sensitive and/or maintained better. And to the degree that testing requires human processing, they are the experts. They do have a website. My gastroenterologist already used them, but I had to bring it up to my daughter's pediatrician. She had never heard of them but was willing to look into using it. She actually called my gastroenterologist and talked to him about why it is a better lab for these tests. I think she also consulted a pediatric gastroenterologist to see if it was recommended for a toddler - and it is valid over age two. So I guess it never hurts to ask. If your doctor isn't willing to look into it, then I would say find another doctor.

Oh - and the genetic testing is not conclusive for a positive diagnosis. But, if you don't have one of the genes, then you will not get celiac. My personal opinion is that if you have the gene you have asymptomatic celiac disease and are putting yourself at risk for the complications even if you never have the celiac symptoms. But that's a whole other can or worms.

HTH!

--Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire

-------------- Original message -------------- I saw this mentioned in a post on Monday. I'm guessing this is a lab?Is there a way to find their locations? Do doctors often allow youto pick your own labs? Can I just ask the GI doc in March to have myson genetically tested? Is the genetic testing conclusive?Thanks.SaraMom to Stanley(normal--they tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

I think that was my post...Yes, Prometheus is a lab that specializes in this sort of testing. I believe their machines are more sensitive and/or maintained better. And to the degree that testing requires human processing, they are the experts. They do have a website. My gastroenterologist already used them, but I had to bring it up to my daughter's pediatrician. She had never heard of them but was willing to look into using it. She actually called my gastroenterologist and talked to him about why it is a better lab for these tests. I think she also consulted a pediatric gastroenterologist to see if it was recommended for a toddler - and it is valid over age two. So I guess it never hurts to ask. If your doctor isn't willing to look into it, then I would say find another doctor.

Oh - and the genetic testing is not conclusive for a positive diagnosis. But, if you don't have one of the genes, then you will not get celiac. My personal opinion is that if you have the gene you have asymptomatic celiac disease and are putting yourself at risk for the complications even if you never have the celiac symptoms. But that's a whole other can or worms.

HTH!

--Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire

-------------- Original message -------------- I saw this mentioned in a post on Monday. I'm guessing this is a lab?Is there a way to find their locations? Do doctors often allow youto pick your own labs? Can I just ask the GI doc in March to have myson genetically tested? Is the genetic testing conclusive?Thanks.SaraMom to Stanley(normal--they tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

I think that was my post...Yes, Prometheus is a lab that specializes in this sort of testing. I believe their machines are more sensitive and/or maintained better. And to the degree that testing requires human processing, they are the experts. They do have a website. My gastroenterologist already used them, but I had to bring it up to my daughter's pediatrician. She had never heard of them but was willing to look into using it. She actually called my gastroenterologist and talked to him about why it is a better lab for these tests. I think she also consulted a pediatric gastroenterologist to see if it was recommended for a toddler - and it is valid over age two. So I guess it never hurts to ask. If your doctor isn't willing to look into it, then I would say find another doctor.

Oh - and the genetic testing is not conclusive for a positive diagnosis. But, if you don't have one of the genes, then you will not get celiac. My personal opinion is that if you have the gene you have asymptomatic celiac disease and are putting yourself at risk for the complications even if you never have the celiac symptoms. But that's a whole other can or worms.

HTH!

--Trudy San , CA "People who believe in absurdities will eventually commit atrocities." ~Voltaire

-------------- Original message -------------- I saw this mentioned in a post on Monday. I'm guessing this is a lab?Is there a way to find their locations? Do doctors often allow youto pick your own labs? Can I just ask the GI doc in March to have myson genetically tested? Is the genetic testing conclusive?Thanks.SaraMom to Stanley(normal--they tell me), Kurtis(lcdh, et.al.), and Louis (CD)

[Guest guest]

Very interesting. I didn't know it was possible to get it without DQ2/DQ8. Thanks.

Trudy

Re: Prometheus

Remember that the chance of CD in a person without DQ2 or DQ8 is about4%, so it isn't a for sure will not get it.There are studies out there on a few other gene markers that justhaven't hit "main stream" DQ1 for example. And Dangerous Grains hassome other gene markers (I'm only into the 4th or 5th chapter at thispoint).My dh is DQ2 without symptoms and initial TTG negative. We arewaiting on the rest of the lab reports, he wants a biopsy to know ifhe has CD to avoid complications later in life. He hasn't read asmuch as I have, but from what I can tell -- a biopsy will not tell himif he has CD until it is progressed to a damage state, especially withother test panels coming back normal. Even though I do not carry either DQ2 or DQ8, I want to rule out theother gene markers b/c I'm not convienced with my family history thatthere isn't CD there.RejoyceVA

[Guest guest]

Correct. And the TTG number corresponds to the amount of damage, once the

damage gets to a level that can be seen on the biopsy (there are more

powerful microscopes they have used in research studies to detect very

minute amounts of damage, that aren't seen on the traditional scopes used).

If he has no symptoms and a FULL celiac panel came back with all negative

values - a biopsy is a waste of time and money. However, with the gene and

his high risk factor, he should have his antibody levels checked every other

year (for life) or if symptoms develop, until he is diagnosed (or passes

away from other causes - this is a lifetime of testing and the scope will

never show anything unless CD becomes active and damage accrues).

> -----Original Message-----

> My dh is DQ2 without symptoms and initial TTG negative. We are

> waiting on the rest of the lab reports, he wants a biopsy to know if

> he has CD to avoid complications later in life. He hasn't read as

> much as I have, but from what I can tell -- a biopsy will not tell him

> if he has CD until it is progressed to a damage state, especially with

> other test panels coming back normal.

---

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