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Re: Biopsy for celiac

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- He would have to pile on the gluten (like bread with every

meal, lots of pasta, etc) for 3-6 mos in order to have an accurate

biopsy. And no, a negative biopsy does not rule out celiac. There

are lots of variables than can result in a false negative for the

biopsy - damage can be patchy, not enough samples are taken,

inexperienced lab reading the slides, etc.

An official diagnosis can be very elusive.

Sue in Denver

>

> One more question for my son who is in college. If he starts eating

a

> little gluten so he can have the biopsy test, how much does he need

to eat

> and for how long before he is tested? He is thinking about making

> appointment during Christmas break and getting the test. If you do

the

> biopsy will you know for sure if you have celiac?

> Thanks

>

>

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Instead of trying to eat that much gluten...and getting ill from it...why not do a genetic blood screening? Easier than a biopsy and cheaper too....

Just a thought. Laurel>> One more question for my son who is in college. If he starts eating a> little gluten so he can have the biopsy test, how much does he need to eat> and for how long before he is tested? He is thinking about making> appointment during Christmas break and getting the test. If you do the> biopsy will you know for sure if you have celiac?> Thanks> >

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What is the genetic blood screening? He had some blood work from one doctor

and he said he did not have celiac but went to family doctor for something

else and he did blood test and he said it was high for celiac.

Do you have to be eating gluten for the blood test/

I thought only the biopsy was the only sure way to know.

Instead of trying to eat that much gluten...and getting ill from it...why

not do a genetic blood screening? Easier than a biopsy and cheaper too....

Just a thought. Laurel

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>

> What is the genetic blood screening? He had some blood work from

one doctor

> and he said he did not have celiac but went to family doctor for

something

> else and he did blood test and he said it was high for celiac.

>

> Do you have to be eating gluten for the blood test/

> I thought only the biopsy was the only sure way to know.

>

Eating gluten or not doesn't affect GENETIC blood typing. That's

called " HLA typing " . Only a few labs do it. Some insurance

companies won't cover it, etc.

There is Enterolab genetic testing which brings its own complications

and issues. I don't think a college student would want or be able

to collect and freeze p00p too easily. So he might want to wait

until Thanksgiving or Christmas break for this route. And the

results can be controversial.

Antibody testing does require consumption of gluten. It can be

negative even in the presence of disease.

Biopsy also requires gluten consumption, but it ALSO can be negative

even in the presence of disease.

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Enterolabs genetic testing is done with a cheek swab. No poop

involved in that part. I don't think their genetic testing is as

controversial as the other stuff, although Dr Fine does identify some

genes that are associated with gluten senstivity in addition to the

widely acknowledged celiac genes.

Sue in Denver

>

>

> There is Enterolab genetic testing which brings its own complications

> and issues. I don't think a college student would want or be able

> to collect and freeze p00p too easily. So he might want to wait

> until Thanksgiving or Christmas break for this route. And the

> results can be controversial.

>

> Antibody testing does require consumption of gluten. It can be

> negative even in the presence of disease.

>

> Biopsy also requires gluten consumption, but it ALSO can be negative

> even in the presence of disease.

>

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Our genetic bloodwork was done by Promithius Labs in CA--where the

GI sent the vial(s) (I can't remember if it was 1 or more at this

point.)

NO, you do NOT need to be eating gluten. The test was $440 for us.

The rest was picked up by insurance. BIG " savings " over a

biopsy...Gabby's endoscopy was over $2000 for our part!

We were told the endoscopy/biopsy was the " gold standard " and shows

correct positive results/negative results for " most people " . Uh,

Gabby's not one of them. You HAVE to have been eating gluten for a

while (3-6 months) for a " good " biopsy. The genetic blood work is

the " platinum " standard--it will tell you if you have the gene for

celiac or not. But, you can be gluten INTOLERANT and NOT have the

gene. In that case, the bloodwork won't tell you. Also, the biopsy

could STILL be inclonclusive or negative.

Hope that helps you--Laurel--also in MI (Warren)!

>

> What is the genetic blood screening? He had some blood work from

one doctor

> and he said he did not have celiac but went to family doctor for

something

> else and he did blood test and he said it was high for celiac.

>

> Do you have to be eating gluten for the blood test/

> I thought only the biopsy was the only sure way to know.

>

>

> Instead of trying to eat that much gluten...and getting ill from

it...why

> not do a genetic blood screening? Easier than a biopsy and cheaper

too....

>

> Just a thought. Laurel

>

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As Esther suggests, the gene test doesn't require that he be eating gluten. However, the gene part of the enterolab testing is not based on the stool sample. You receive two separate long cotton swabs that you run on the inside of both cheeks in your mouth. I had this test done, as well as a full HLA DR test and Dr. Fine's test was just as accurate as the blood tests. Most insurances will cover the HLA DR - Labcorp tests provide the most complete information. If you're interested, I can let you know the codes that my doc used to run the test.

Regards,

B.

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I would like to know the codes. I am Celiac (diagnosed by biopsy). My

youngest child has lots of signs- stomach hurts all the time- esp.

after meals, very frequent D, distended stomach, she had a mouth ulcer

this weekend, frequent nose bleeds, frequent gas, and the list goes on

and on. I have asked her doc several times about it since my diagnosis.

He ran a blood test (the same blood test came back neg for me TWICE, my

biopsy left no questions though.) I am going to push for more testing

and I would like this test done before I start requesting more invasive

like biopsy.

>

> As Esther suggests, the gene test doesn't require that he be eating

gluten. However, the gene part of the enterolab testing is not based on

the stool sample. You receive two separate long cotton swabs that you

run on the inside of both cheeks in your mouth. I had this test done,

as well as a full HLA DR test and Dr. Fine's test was just as accurate

as the blood tests. Most insurances will cover the HLA DR - Labcorp

tests provide the most complete information. If you're interested, I

can let you know the codes that my doc used to run the test.

>

>

> Regards,

> B.

>

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For better or for worse, the biopsy is still the most widely

recognized (by doctors, health groups, etc) test for celiac sprue. I

think a genetic test might be a good way to start, as 99.5 percent of

celiacs (or an equally high number) have the celiac genes. If he

doesn't have them , then he probably doesn't have Celiac. Many people

are happy with Entrolab results, but, if he really wants to find out

in a way that is conclusive to the general medical community, and is

willing to do the whole gluten consumption thing, I would encourage

him to go for it. For one thing, it's hard being in college and on

your own and sticking to the diet if you're not entirely convinced

about the diagnosis. There are some fantastic celiac medical clinics

as well that offer true follow up care (lifetime), such as the

Stanford Celiac Clinic, but the catch is, if you want to go there you

MUST have a diagnosis through biopsy, and the doctors even like to

review your biopsy, as many doctors are not familiar enough with the

disease to read the results properly. If his numbers are elevated AND

he has the celiac genes, i think those are pretty strong indications

that something is up- and if his local doctor doesn't confirm the

diagnosis, you might consider having the biopsy results (slides?) sent

to a specialist clinic so they can review the results. In my opinion,

the biopsy is not a huge deal as medical procedures go. If consuming

gluten is too much stress during the school term, he might consider

holding off until summer... But, if he's going to cheat and isn't

convinced about the diagnosis, I would say the sooner he has definite

proof the better. I was diagnosed at three, and I've always been glad

I have the biopsy that told me for SURE, and that I have such strong

reactions (vomiting, big D for lesser amounts) that there is no doubt.

Well... sort of glad about the last part. Just wanted to offer a pro

biopsy perspective to the mix. :)

*well wishes*

>

> What is the genetic blood screening? He had some blood work from

one doctor

> and he said he did not have celiac but went to family doctor for

something

> else and he did blood test and he said it was high for celiac.

>

> Do you have to be eating gluten for the blood test/

> I thought only the biopsy was the only sure way to know.

>

>

> Instead of trying to eat that much gluten...and getting ill from

it...why

> not do a genetic blood screening? Easier than a biopsy and cheaper

too....

>

> Just a thought. Laurel

>

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I'm with Laurel. Especially after our problems with the testing. My daughter

and I were both negative in blood tests. She had so many outward symptoms. Her

biopsy only showed inflamed villi, which her GI said was NOT celiac and she

would never have celiac, no way, no how. Her genetic testing showed one marker

for celiac and one for gluten intolerance. Since her marker came back positive,

we all got tested. DH had one for celiac, DS one of each and I have two for

gluten intlorance. We all went gluten free and all are feeling better already.

I think the diet is the real proof. If you aren't getting sick on the diet,

then you know.

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

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I am concerned about the misinformation being spread on this board.

The genetic test for celiac disease not the " Platinum standard " for

diagnosing Celiac disease. In fact it is not used for diagnose at

all. The genetic test is used to see if someone has the genetic pre-

dispostion for the disease. Just because you have the gene does not

mean you have the disease, it has to be triggered. The biopsy

remains the only reliable method for diagnosis.

See the following article from the University of Chicago Celiace

disease program which explains the gene test in more detail. The

article states:

" A positive gene test, however, does not diagnose the disease but

increases the likelihood that it is present. "

http://www.celiacdisease.net/Default.aspx?tabid=82

> >

> > What is the genetic blood screening? He had some blood work from

> one doctor

> > and he said he did not have celiac but went to family doctor for

> something

> > else and he did blood test and he said it was high for celiac.

> >

> > Do you have to be eating gluten for the blood test/

> > I thought only the biopsy was the only sure way to know.

> >

> >

> > Instead of trying to eat that much gluten...and getting ill from

> it...why

> > not do a genetic blood screening? Easier than a biopsy and

cheaper

> too....

> >

> > Just a thought. Laurel

> >

>

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I don't think anyone is advocating a gene test alone in lieu of other testing, whether one decides to go the blood/biopsy route or the enterolab test. However, doing a gene test is quite useful for a parent to do to know whether they could possibly have passed the genes on to their kids. That was the only reason I did the gene test, as I had already personally made up my mind based upon how badly gluten made me feel that I wasn't going to eat it any longer (I realize that approach isn't considered reasonable for alot of people). The gene test was useful to convince my husband of the need to test my two sons. It is also a very useful piece of info in my opinion for those that get a negative blood test or biopsy initially as I think that definitely suggests that testing in the future is not at all unreasonable.

For those of us that have struggled for years with health problems, only to be told by medical professionals that there's nothing wrong with us (due to their own ignorance), the enterolab can be a very useful test. There are more progressive doctors that now recognize the value of early detection of gluten reactions and for me personally, the test was a godsend in uncovering the health issues my sons were having. And, the pediatrician didn't debate the merit of the test results - my boys had very high antibodies and they did meet the other half of the "gold standard" of diagnosis in terms of substantial clinical improvement on the GF diet.

Regards,

B.

-------------- Original message --------------

I am concerned about the misinformation being spread on this board. The genetic test for celiac disease not the "Platinum standard" for diagnosing Celiac disease. In fact it is not used for diagnose at all. The genetic test is used to see if someone has the genetic pre-dispostion for the disease. Just because you have the gene does not mean you have the disease, it has to be triggered. The biopsy remains the only reliable method for diagnosis.See the following article from the University of Chicago Celiace disease program which explains the gene test in more detail. The article states:"A positive gene test, however, does not diagnose the disease but increases the likelihood that it is present."http://www.celiacdisease.net/Default.aspx?tabid=82> >> > What is the genetic blood screening? He had some blood work from > one doctor> > and he said he did not have celiac but went to family doctor for > something> > else and he did blood test and he said it was high for celiac.> > > > Do you have to be eating gluten for the blood test/> > I thought only the biopsy was the only sure way to know.> > > > > > Instead of trying to eat that much gluten...and getting ill from > it...why> > not do a genetic blood screening? Easier than a biopsy and cheaper > too....> > > > Just a thought. Laurel> >

BR>>

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>> I am concerned about the misinformation being spread on this board. > The genetic test for celiac disease not the "Platinum standard" for > diagnosing Celiac disease.

In our case--and in many cases--the gene information IS the Platinum standard. I say this because ALL OTHER TESTING came back negative yet we STILL had symptoms. THIS IS NOT, NOT, NOT MISINFORMATION!!!!!

If you (or your child) have all the symptoms of celiac yet every stinkin' bloodtest comes back "normal"and your biopsy is "normal", and you FINALLY get the genetics test coming back & saying--1 celiac gene, what are YOU going to call that test?????????????

My daughter was DIAGNOSED with celiac because of that test. Her GI, her Ped, dietician and neurologist ALL agreed the genetic test was "the platinum standard". It will tell you if you have the gene(s). If you have the genes but have no symptoms, you might want to be careful because celiac can show up in the future. If you don't have the genes, you don't have celiac. If you are showing all the sypmtoms and all other tests show you are "normal"--and you are 3 years old & so small you are mistaken for a 10 month old.....or, in our current case, you are 4 and wearing 0-3 month shorts and in 4 year old PRESCHOOL.... I call that test a very good, useful and NONINVASIVE test that should be asked for BEFORE a biopsy...especially for young children.

Laurel

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Our friends case is similar. Their 11 year old was getting very ill, both physically and emotionally. The blood test was negative (except iga? can't remember which, but it just indicates inflammation which *could be* indicative of celiac), biopsy negative. GI doctor was surprised because all of the symptoms suggested celiac. She recommended trying a gf diet anyway and running the gene test just to see if celiac was out of the picture or not. Gene test positive. Totally gf kid who made a remarkable recovery in a very short time!!1Laurel S wrote: >> I am concerned about the misinformation being spread on this board. > The

genetic test for celiac disease not the "Platinum standard" for > diagnosing Celiac disease. In our case--and in many cases--the gene information IS the Platinum standard. I say this because ALL OTHER TESTING came back negative yet we STILL had symptoms. THIS IS NOT, NOT, NOT MISINFORMATION!!!!! If you (or your child) have all the symptoms of celiac yet every stinkin' bloodtest comes back "normal"and your biopsy is "normal", and you FINALLY get the genetics test coming back & saying--1 celiac gene, what are YOU going to call that test????????????? My daughter was DIAGNOSED with celiac because of that test. Her GI, her Ped, dietician and neurologist ALL agreed the genetic test was "the platinum standard". It will tell you if you have the gene(s). If you have the genes but have no symptoms,

you might want to be careful because celiac can show up in the future. If you don't have the genes, you don't have celiac. If you are showing all the sypmtoms and all other tests show you are "normal"--and you are 3 years old & so small you are mistaken for a 10 month old.....or, in our current case, you are 4 and wearing 0-3 month shorts and in 4 year old PRESCHOOL.... I call that test a very good, useful and NONINVASIVE test that should be asked for BEFORE a biopsy...especially for young children. Laurel Pandolfo Photography by http://www.photographybywendy.photosite.com/

Stay in the know. Pulse on the new Yahoo.com. Check it out.

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My daughter's genetic testing went through promithius also. The rest of us went

through entorlab. If your insurance won't pay for either, enterolab is cheaper.

Our insurance covered part of both of them.

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

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I don't think anyone said that the genetic testing was the platinum standard. I

think it was suggested rather than the biopsy or the blood test which can come

back negative or inconclusive in a percentage of cases. I suggested the genetic

testing and an elimination diet as opposed to the higher cost biopsy. That was

just my opinion.

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

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>

> Our genetic bloodwork was done by Promithius Labs in CA--where the

> GI sent the vial(s) (I can't remember if it was 1 or more at this

> point.)

>

> NO, you do NOT need to be eating gluten. The test was $440 for us.

> The rest was picked up by insurance. BIG " savings " over a

> biopsy...Gabby's endoscopy was over $2000 for our part!

I had myself DQ typed as a result of a control study. Did not

event think to consider celiac disease until I did a search

on DQ2 and DQ8 as part of that study. Later I was casually

reading the top 15 papers and these papers at it was like

reading off symptoms I had for many years. " What

is the celiac [stuff]? "

Most honest physicians will tell you that the biopsy,

by itself, gives inconsistent results. DQ is another guide

and antibodies are another guide. If you have the positive

biopsy then you know, but if you don't other signs may

cause you to suspect and change.

Between 1952 and 1956 when the cause of CD was known

and the biopsy was rare, the diagnosis for CD was to

remove gluten for a month, observe, challenge and observe

(If the patients reaction was not severe enough). Many

patients after going gluten free for a month simply

chose not to be rechallenged.

If DQ typing leads you to go GF and this resolves most

of the problem, it is therefore adequate. In 1950s

the cases that were being seen were the most severe,

life threatening situations, one expects positive biopsies.

The problem with waiting on a positive biopsy is that

much damage is done, particularly in late onset cases,

by the time the biopsy is positive. In the Finnish study

2 of their 28 died, based on what they were talking about

1 of lymphoma. The damage to the stem cells in the GI

tract has been examined, it is DNA damage and is akin

to aging 2 or 3 years the GI tract for every year the

lymphocytes are elevated. This is were the cancer

risk comes from.

> We were told the endoscopy/biopsy was the " gold standard " and shows

> correct positive results/negative results for " most people " .

Gold is afterall just another metal.

> Uh,

> Gabby's not one of them. You HAVE to have been eating gluten for a

> while (3-6 months) for a " good " biopsy.

You have to be eating gluten.

Your histologist needs to be proficient at grading severity.

The sample needs to come from a patch that exhibits disease.

(Patchy atrophy was noted in 1957 and still many

physicians ignore this false negative possibility)

> The genetic blood work is

> the " platinum " standard--it will tell you if you have the gene for

> celiac or not.

The first standard and the most important standard is that

removal of wheat gluten reduces the symptoms and improves

the quality of life for the affected individual. There

are many paths to get there.

If I had a test

that could identify abnormal immunology in the gut on

the first day, I would on that day stop eating gluten.

There is no such test, in very young children if you

are lucky you can get a diagnoses within 4 months.

In adults, the studies to which I have referred show

symptoms preceding obvious disease by 5 or 10 years.

, and only DQ typing can predict whether removal of

gluten would be effective or ineffective, at these

earlier points . Its like a flag to the physician,

if the patient has this DQ be aware that he/she

may have a celiac condition.

Although its most important use if for a sense of

awareness in siblings, for those who may carry

the gene to know they are at increased risk.

> But, you can be gluten INTOLERANT and NOT have the

> gene. In that case, the bloodwork won't tell you.

Rarely. I have read these occurances are between 2 and 5%

And when transhaplotypes are considered less than 2%.

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,

Don't be discouraged! The first thing he can do is get a genetic

test to see if Celiac is even a possibility. From there, he can go to

Entrolab or start ingesting gluten for a biopsy. Best wishes and good

health...

-

>

>

> Thank you for all your comments.

> I think I am more frustrated now and don't know where to start with this

> college boy.

> I don't know what I am going to tell him. He thinks he can go to

get a test

> and they will find out his problem. It sounds like that might not be the

> case.

> Life is fun isn't it.

> in MI

> M

>

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Ok who does he go to get the genetic test? Can someone in Rexburg do that?

I do know that his first cousin on his fathers side was suppose to of had

celiac. He died in a car accident a few years ago. He would be the same

age as my son. He was diagnosed when he was a young child.

Re: Biopsy for celiac

,

Don't be discouraged! The first thing he can do is get a genetic test to

see if Celiac is even a possibility. From there, he can go to Entrolab or

start ingesting gluten for a biopsy. Best wishes and good health...

-

>

>

> Thank you for all your comments.

> I think I am more frustrated now and don't know where to start with

> this college boy.

> I don't know what I am going to tell him. He thinks he can go to

get a test

> and they will find out his problem. It sounds like that might not be

> the case.

> Life is fun isn't it.

> in MI

> M

>

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Rexburg, Idaho?? If money is not an issue, the simplest way would

be to order the genetic test thru enterolab (www.enterolab.com).

They will send him a kit and he does the cheek swab and sends it

back to them. Otherwise, I'd suggest calling doctors in his area to

see if they could get the appropriate testing done (and thus you may

be able to get insurance to help pay for it). They just need to be

willing to send out the sample to one of the labs that does the

genetic testing (prometheus, etc).

Good luck -

Sue in Denver

> >

> >

> > Thank you for all your comments.

> > I think I am more frustrated now and don't know where to start

with

> > this college boy.

> > I don't know what I am going to tell him. He thinks he can go to

> get a test

> > and they will find out his problem. It sounds like that might

not be

> > the case.

> > Life is fun isn't it.

> > in MI

> > M

> >

>

>

>

>

>

>

>

>

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Rexburg, Idaho?? If money is not an issue, the simplest way would

be to order the genetic test thru enterolab (www.enterolab.com).

They will send him a kit and he does the cheek swab and sends it

back to them. Otherwise, I'd suggest calling doctors in his area to

see if they could get the appropriate testing done (and thus you may

be able to get insurance to help pay for it). They just need to be

willing to send out the sample to one of the labs that does the

genetic testing (prometheus, etc).

Good luck -

Sue in Denver

> >

> >

> > Thank you for all your comments.

> > I think I am more frustrated now and don't know where to start

with

> > this college boy.

> > I don't know what I am going to tell him. He thinks he can go to

> get a test

> > and they will find out his problem. It sounds like that might

not be

> > the case.

> > Life is fun isn't it.

> > in MI

> > M

> >

>

>

>

>

>

>

>

>

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Rexburg, Idaho?? If money is not an issue, the simplest way would

be to order the genetic test thru enterolab (www.enterolab.com).

They will send him a kit and he does the cheek swab and sends it

back to them. Otherwise, I'd suggest calling doctors in his area to

see if they could get the appropriate testing done (and thus you may

be able to get insurance to help pay for it). They just need to be

willing to send out the sample to one of the labs that does the

genetic testing (prometheus, etc).

Good luck -

Sue in Denver

> >

> >

> > Thank you for all your comments.

> > I think I am more frustrated now and don't know where to start

with

> > this college boy.

> > I don't know what I am going to tell him. He thinks he can go to

> get a test

> > and they will find out his problem. It sounds like that might

not be

> > the case.

> > Life is fun isn't it.

> > in MI

> > M

> >

>

>

>

>

>

>

>

>

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How much would it cost. Money could be a issue but I am willing to

sacrifice for my son to get some answers.

Re: Biopsy for celiac

Rexburg, Idaho?? If money is not an issue, the simplest way would be to

order the genetic test thru enterolab (www.enterolab.com).

They will send him a kit and he does the cheek swab and sends it back to

them. Otherwise, I'd suggest calling doctors in his area to see if they

could get the appropriate testing done (and thus you may be able to get

insurance to help pay for it). They just need to be willing to send out the

sample to one of the labs that does the genetic testing (prometheus, etc).

Good luck -

Sue in Denver

> >

> >

> > Thank you for all your comments.

> > I think I am more frustrated now and don't know where to start

with

> > this college boy.

> > I don't know what I am going to tell him. He thinks he can go to

> get a test

> > and they will find out his problem. It sounds like that might

not be

> > the case.

> > Life is fun isn't it.

> > in MI

> > M

> >

>

>

>

>

>

>

>

>

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