Re: Opinions on Enterolabs and Dr. Fine?

[Guest guest]

,

I will tell you our experience. Our middle child sick for years and no diagnosis. GI problems headaches and foot pain (neuropathy). Finally the neurologist refers to a pediatric GI who orders the celiac blood work. His AGA IgG antibodies were extremely high. So, they did the biopsy which was inconclusive. The GI says it's not celiac and refuses to investigate any further. She says some people just produce antibodies to gluten and this is not a problem???????

So, we did the Enterolab testing to see if he was DQ2 or DQ8 (which he was - DQ8) figuring if he didn't have the gene, it couldn't be celiac, if he did, the biopsy could be wrong or his intestines not damaged enough yet to show anything.

Then we put him on the GF diet for one year. Results were miraculous. Then, after one year the pediatric neurologist (who was onboard, unlike the pediatric GI) re-ordered the celiac bloodwork himself, and his level had dropped from 80 to 12 (11 and under is normal). So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy. I am thankful the blood work confirmed what we thought though - the tangible stuff is good in terms of sticking to the diet. I don't know if he would have started eating gluten again anyway. He knew how much better he felt. There have been no compliance issue with him because it makes him SO sick.

Then, the doctor wanted all of us - mom, dad and 2 siblings to have the celiac bloodwork. Both siblings were producing the AGA IgG antibodies - also in the high range. They did not seem very symptomatic, compared to the other child who was SO sick, except some ongoing indigestion. Mom and Dad's bloodwork was normal.

SOOOO...we decided to bite the bullet and have all of us tested by EnteroLab. Our insurance did not cover it. We knew either my husband or I had the gene and whoever had it should be on the lookout for future symptoms even though we weren't producing antibodies rright now. Also didn't want to put either of the other 2 boys on the GF diet if they didn't have the gene. It turns out I am DQ2 and DQ8, my husband is neither and all three boys got the DQ8 gene from me.

They are all on the GF diet and when it has been one year, we will have their bloodwork re-done to make sure there ranges are within normal limits.

We are very glad to have done it. We liked that it was a cheek swab as the middle child had been poked constantly for the first 8 years of his life while they tested him for everything under the son. Also felt like if we had them biopsied and it was inconclusive like my other son, we would have done the Enterolab and moved on in this directin anyway.

Trust your parental instincts.

Hope this helps.

in GA Opinions on Enterolabs and Dr. Fine?

Our oldest daughter and one of our sons were recently diagnosed (by conventional blood work) with CD. The lab work on our other (9) children came back either negative or inconclusive. (Yes, we have eleven children ~ all ours!) We are considering having lab work done by EnteroLabs (Dr. Fine) to figure out exactly which of our other children are also positive for CD. Any opinions? This seems like a "ligit", more accurate and less invasive form of testing than the traditional intestional biopsy ~ although a little pricey. I am guessing that our insurance won't cover it. I am considering having the "inconclusive" children and the ones that I am especially suspicious of tested now, then will save up money and have the others tested later.

If you have information or experience to share with me I would very much appreciate it.

Thanks!

in MO

[Guest guest]

,

I will tell you our experience. Our middle child sick for years and no diagnosis. GI problems headaches and foot pain (neuropathy). Finally the neurologist refers to a pediatric GI who orders the celiac blood work. His AGA IgG antibodies were extremely high. So, they did the biopsy which was inconclusive. The GI says it's not celiac and refuses to investigate any further. She says some people just produce antibodies to gluten and this is not a problem???????

So, we did the Enterolab testing to see if he was DQ2 or DQ8 (which he was - DQ8) figuring if he didn't have the gene, it couldn't be celiac, if he did, the biopsy could be wrong or his intestines not damaged enough yet to show anything.

Then we put him on the GF diet for one year. Results were miraculous. Then, after one year the pediatric neurologist (who was onboard, unlike the pediatric GI) re-ordered the celiac bloodwork himself, and his level had dropped from 80 to 12 (11 and under is normal). So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy. I am thankful the blood work confirmed what we thought though - the tangible stuff is good in terms of sticking to the diet. I don't know if he would have started eating gluten again anyway. He knew how much better he felt. There have been no compliance issue with him because it makes him SO sick.

Then, the doctor wanted all of us - mom, dad and 2 siblings to have the celiac bloodwork. Both siblings were producing the AGA IgG antibodies - also in the high range. They did not seem very symptomatic, compared to the other child who was SO sick, except some ongoing indigestion. Mom and Dad's bloodwork was normal.

SOOOO...we decided to bite the bullet and have all of us tested by EnteroLab. Our insurance did not cover it. We knew either my husband or I had the gene and whoever had it should be on the lookout for future symptoms even though we weren't producing antibodies rright now. Also didn't want to put either of the other 2 boys on the GF diet if they didn't have the gene. It turns out I am DQ2 and DQ8, my husband is neither and all three boys got the DQ8 gene from me.

They are all on the GF diet and when it has been one year, we will have their bloodwork re-done to make sure there ranges are within normal limits.

We are very glad to have done it. We liked that it was a cheek swab as the middle child had been poked constantly for the first 8 years of his life while they tested him for everything under the son. Also felt like if we had them biopsied and it was inconclusive like my other son, we would have done the Enterolab and moved on in this directin anyway.

Trust your parental instincts.

Hope this helps.

in GA Opinions on Enterolabs and Dr. Fine?

Our oldest daughter and one of our sons were recently diagnosed (by conventional blood work) with CD. The lab work on our other (9) children came back either negative or inconclusive. (Yes, we have eleven children ~ all ours!) We are considering having lab work done by EnteroLabs (Dr. Fine) to figure out exactly which of our other children are also positive for CD. Any opinions? This seems like a "ligit", more accurate and less invasive form of testing than the traditional intestional biopsy ~ although a little pricey. I am guessing that our insurance won't cover it. I am considering having the "inconclusive" children and the ones that I am especially suspicious of tested now, then will save up money and have the others tested later.

If you have information or experience to share with me I would very much appreciate it.

Thanks!

in MO

[Guest guest]

,

I will tell you our experience. Our middle child sick for years and no diagnosis. GI problems headaches and foot pain (neuropathy). Finally the neurologist refers to a pediatric GI who orders the celiac blood work. His AGA IgG antibodies were extremely high. So, they did the biopsy which was inconclusive. The GI says it's not celiac and refuses to investigate any further. She says some people just produce antibodies to gluten and this is not a problem???????

So, we did the Enterolab testing to see if he was DQ2 or DQ8 (which he was - DQ8) figuring if he didn't have the gene, it couldn't be celiac, if he did, the biopsy could be wrong or his intestines not damaged enough yet to show anything.

Then we put him on the GF diet for one year. Results were miraculous. Then, after one year the pediatric neurologist (who was onboard, unlike the pediatric GI) re-ordered the celiac bloodwork himself, and his level had dropped from 80 to 12 (11 and under is normal). So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy. I am thankful the blood work confirmed what we thought though - the tangible stuff is good in terms of sticking to the diet. I don't know if he would have started eating gluten again anyway. He knew how much better he felt. There have been no compliance issue with him because it makes him SO sick.

Then, the doctor wanted all of us - mom, dad and 2 siblings to have the celiac bloodwork. Both siblings were producing the AGA IgG antibodies - also in the high range. They did not seem very symptomatic, compared to the other child who was SO sick, except some ongoing indigestion. Mom and Dad's bloodwork was normal.

SOOOO...we decided to bite the bullet and have all of us tested by EnteroLab. Our insurance did not cover it. We knew either my husband or I had the gene and whoever had it should be on the lookout for future symptoms even though we weren't producing antibodies rright now. Also didn't want to put either of the other 2 boys on the GF diet if they didn't have the gene. It turns out I am DQ2 and DQ8, my husband is neither and all three boys got the DQ8 gene from me.

They are all on the GF diet and when it has been one year, we will have their bloodwork re-done to make sure there ranges are within normal limits.

We are very glad to have done it. We liked that it was a cheek swab as the middle child had been poked constantly for the first 8 years of his life while they tested him for everything under the son. Also felt like if we had them biopsied and it was inconclusive like my other son, we would have done the Enterolab and moved on in this directin anyway.

Trust your parental instincts.

Hope this helps.

in GA Opinions on Enterolabs and Dr. Fine?

Our oldest daughter and one of our sons were recently diagnosed (by conventional blood work) with CD. The lab work on our other (9) children came back either negative or inconclusive. (Yes, we have eleven children ~ all ours!) We are considering having lab work done by EnteroLabs (Dr. Fine) to figure out exactly which of our other children are also positive for CD. Any opinions? This seems like a "ligit", more accurate and less invasive form of testing than the traditional intestional biopsy ~ although a little pricey. I am guessing that our insurance won't cover it. I am considering having the "inconclusive" children and the ones that I am especially suspicious of tested now, then will save up money and have the others tested later.

If you have information or experience to share with me I would very much appreciate it.

Thanks!

in MO

[Guest guest]

I love BIG families -- fabulous. You have surpassed the two largest

families at our church who both have 9! I have 3 so far and I'm

exhausted...

As for Fine and EnteroLabs, I have come across one post that someone

had insurance pay for it. When I contacted our insurance, labs had to

be ordered by an MD for coverage. So, if you got your MD on board to

order the labs... Maybe?

I think his genetic marker testing is better b/c it adds the DQ1 which

is not yet recognized in the medical community.

Here is a post all about EnteroLabs from Brain Talk Communities.

http://brain.hastypastry.net/forums/showthread.php?t=113430

It is a great little forum for information.

Rejoyce

Winchester, VA

>

> Our oldest daughter and one of our sons were recently diagnosed (by

> conventional blood work) with CD. The lab work on our other (9)

> children came back either negative or inconclusive. (Yes, we have

> eleven children ~ all ours!) We are considering having lab work done

> by EnteroLabs (Dr. Fine) to figure out exactly which of our

> other children are also positive for CD. Any opinions? This seems

> like a " ligit " , more accurate and less invasive form of testing than

> the traditional intestional biopsy ~ although a little pricey. I am

> guessing that our insurance won't cover it. I am considering having

> the " inconclusive " children and the ones that I am especially

> suspicious of tested now, then will save up money and have the others

> tested later.

>

> If you have information or experience to share with me I would very

> much appreciate it.

>

> Thanks!

> in MO

>

[Guest guest]

I love BIG families -- fabulous. You have surpassed the two largest

families at our church who both have 9! I have 3 so far and I'm

exhausted...

As for Fine and EnteroLabs, I have come across one post that someone

had insurance pay for it. When I contacted our insurance, labs had to

be ordered by an MD for coverage. So, if you got your MD on board to

order the labs... Maybe?

I think his genetic marker testing is better b/c it adds the DQ1 which

is not yet recognized in the medical community.

Here is a post all about EnteroLabs from Brain Talk Communities.

http://brain.hastypastry.net/forums/showthread.php?t=113430

It is a great little forum for information.

Rejoyce

Winchester, VA

>

> Our oldest daughter and one of our sons were recently diagnosed (by

> conventional blood work) with CD. The lab work on our other (9)

> children came back either negative or inconclusive. (Yes, we have

> eleven children ~ all ours!) We are considering having lab work done

> by EnteroLabs (Dr. Fine) to figure out exactly which of our

> other children are also positive for CD. Any opinions? This seems

> like a " ligit " , more accurate and less invasive form of testing than

> the traditional intestional biopsy ~ although a little pricey. I am

> guessing that our insurance won't cover it. I am considering having

> the " inconclusive " children and the ones that I am especially

> suspicious of tested now, then will save up money and have the others

> tested later.

>

> If you have information or experience to share with me I would very

> much appreciate it.

>

> Thanks!

> in MO

>

[Guest guest]

Which test are you planning to do? Just

the gene test?....or the gluten sensitivity stool panel?

Doctors in my area will not give any

validation for the stool test.....basically, they think its bunk. I don’t

necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

[Guest guest]

Which test are you planning to do? Just

the gene test?....or the gluten sensitivity stool panel?

Doctors in my area will not give any

validation for the stool test.....basically, they think its bunk. I don’t

necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

[Guest guest]

Which test are you planning to do? Just

the gene test?....or the gluten sensitivity stool panel?

Doctors in my area will not give any

validation for the stool test.....basically, they think its bunk. I don’t

necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

[Guest guest]

My GI Dr. said the Enterolab tests are based on sound science and had himself and his kids tested. When I asked him why so many Dr.s don't support these tests ( my child's peds GI is one of these Dr.s) he said this is largely driven by money. According to him there is much talk in his community of how much money is available to anyone whose tests have been proofed to be valid - If they support Fine's technology, this cuts off the money making potential for them. As a nurse and a microbiologist - I've read the research that Fine based his tests on. It is sound - the appropriate trials ( blind, double blind) have been done. The fact that many insurance companies are starting to pay or reimburse the costs of these tests is further proof that they are valid. My 17 year old had inconclusive blood tests (low IgA levels) - am going to order the stool tests for him because has many non-GI symptoms but few

GI issues and I think a biopsy will be negative or inconclusive. My 15 year old daughter is being scoped this Friday - she has persistent vomiting and reflux, gas etc.. Just my opinion re these tests, but I'm looking at it from both a personal and professional point of view. Kerri and Jill McCutcheon wrote: Which test are you planning to do? Just the gene test?....or the gluten sensitivity stool panel? Doctors in my area will not give any validation for the stool test.....basically, they think its bunk. I don’t necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

My GI Dr. said the Enterolab tests are based on sound science and had himself and his kids tested. When I asked him why so many Dr.s don't support these tests ( my child's peds GI is one of these Dr.s) he said this is largely driven by money. According to him there is much talk in his community of how much money is available to anyone whose tests have been proofed to be valid - If they support Fine's technology, this cuts off the money making potential for them. As a nurse and a microbiologist - I've read the research that Fine based his tests on. It is sound - the appropriate trials ( blind, double blind) have been done. The fact that many insurance companies are starting to pay or reimburse the costs of these tests is further proof that they are valid. My 17 year old had inconclusive blood tests (low IgA levels) - am going to order the stool tests for him because has many non-GI symptoms but few

GI issues and I think a biopsy will be negative or inconclusive. My 15 year old daughter is being scoped this Friday - she has persistent vomiting and reflux, gas etc.. Just my opinion re these tests, but I'm looking at it from both a personal and professional point of view. Kerri and Jill McCutcheon wrote: Which test are you planning to do? Just the gene test?....or the gluten sensitivity stool panel? Doctors in my area will not give any validation for the stool test.....basically, they think its bunk. I don’t necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

My GI Dr. said the Enterolab tests are based on sound science and had himself and his kids tested. When I asked him why so many Dr.s don't support these tests ( my child's peds GI is one of these Dr.s) he said this is largely driven by money. According to him there is much talk in his community of how much money is available to anyone whose tests have been proofed to be valid - If they support Fine's technology, this cuts off the money making potential for them. As a nurse and a microbiologist - I've read the research that Fine based his tests on. It is sound - the appropriate trials ( blind, double blind) have been done. The fact that many insurance companies are starting to pay or reimburse the costs of these tests is further proof that they are valid. My 17 year old had inconclusive blood tests (low IgA levels) - am going to order the stool tests for him because has many non-GI symptoms but few

GI issues and I think a biopsy will be negative or inconclusive. My 15 year old daughter is being scoped this Friday - she has persistent vomiting and reflux, gas etc.. Just my opinion re these tests, but I'm looking at it from both a personal and professional point of view. Kerri and Jill McCutcheon wrote: Which test are you planning to do? Just the gene test?....or the gluten sensitivity stool panel? Doctors in my area will not give any validation for the stool test.....basically, they think its bunk. I don’t necessarily agree, but if you need/want a doctor’s note for school or

anything else in the future....don’t count on getting one.

Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Kerri...

Thank you for passing this info along. I suggested the stool test for

my nephew, who is having growth and behavioral problems. The results were

positive for gluten and milk. Since he is the first person in their immediate

family to be diagnosed, my SIL also wanted a blood and biopsy...just to make

sure she really had to change her life around for him. She sees how inconvenient

my family’s life can be and is not anxious to have that kind of life for

herself. She went to see two local GI’s who balked at the test, which

caused some major confusion for her and she felt like it was a waste of money.

Even though my nephew had his biopsy a couple of days ago, I will forward your email

to my SIL....though I’m not sure it will make any impact, unless his

biopsy comes back positive.

[Guest guest]

Kerri...

Thank you for passing this info along. I suggested the stool test for

my nephew, who is having growth and behavioral problems. The results were

positive for gluten and milk. Since he is the first person in their immediate

family to be diagnosed, my SIL also wanted a blood and biopsy...just to make

sure she really had to change her life around for him. She sees how inconvenient

my family’s life can be and is not anxious to have that kind of life for

herself. She went to see two local GI’s who balked at the test, which

caused some major confusion for her and she felt like it was a waste of money.

Even though my nephew had his biopsy a couple of days ago, I will forward your email

to my SIL....though I’m not sure it will make any impact, unless his

biopsy comes back positive.

[Guest guest]

Kerri...

Thank you for passing this info along. I suggested the stool test for

my nephew, who is having growth and behavioral problems. The results were

positive for gluten and milk. Since he is the first person in their immediate

family to be diagnosed, my SIL also wanted a blood and biopsy...just to make

sure she really had to change her life around for him. She sees how inconvenient

my family’s life can be and is not anxious to have that kind of life for

herself. She went to see two local GI’s who balked at the test, which

caused some major confusion for her and she felt like it was a waste of money.

Even though my nephew had his biopsy a couple of days ago, I will forward your email

to my SIL....though I’m not sure it will make any impact, unless his

biopsy comes back positive.

[Guest guest]

> My GI Dr. said the Enterolab tests are based on sound science and

> had himself and his kids tested.

=========

my pathologist husband concurs.

Shez

[Guest guest]

> My GI Dr. said the Enterolab tests are based on sound science and

> had himself and his kids tested.

=========

my pathologist husband concurs.

Shez

[Guest guest]

 So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy.  ==========my husband, the pathologist, is continually at war with GI docs in our area.  He cannot understand why the biopsy is considered to be the gold standard as there is so much error in sampling.  he also points out that you can have celiac disease and not have damage to the small intestine.He recently had a case where the patient was negative on blood tests and positive on biopsy and when he called it CD the GI doc disagreed with him.I listen to my husband rant and realize that there appears to be very few GI docs who truly understand CD.   Shez

[Guest guest]

 So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy.  ==========my husband, the pathologist, is continually at war with GI docs in our area.  He cannot understand why the biopsy is considered to be the gold standard as there is so much error in sampling.  he also points out that you can have celiac disease and not have damage to the small intestine.He recently had a case where the patient was negative on blood tests and positive on biopsy and when he called it CD the GI doc disagreed with him.I listen to my husband rant and realize that there appears to be very few GI docs who truly understand CD.   Shez

[Guest guest]

 So, if it looks like a duck, waddles like a duck and quacks like a duck - its a duck - regardless of the gold standard biopsy.  ==========my husband, the pathologist, is continually at war with GI docs in our area.  He cannot understand why the biopsy is considered to be the gold standard as there is so much error in sampling.  he also points out that you can have celiac disease and not have damage to the small intestine.He recently had a case where the patient was negative on blood tests and positive on biopsy and when he called it CD the GI doc disagreed with him.I listen to my husband rant and realize that there appears to be very few GI docs who truly understand CD.   Shez

[Guest guest]

Thanks so much to everyone who responded to my question for results from EntroLab. I am quite reassured now and am looking forward to having some testing done on our children. We can't afford to have everyone tested right now, but will test those who are especially " suspicious " now and save up money to have others tested later.

You have been a wealth of information ~ thanks again!

in MO-- So glad to be Tom's wife and Mommy to Micah (dd-17), Nate (15), Hannah (13), (11), Gabe (10), Abbie (9), Caleb (7), (6), Josiah (5), (3), and (19 mos.)

[Guest guest]

Thanks so much to everyone who responded to my question for results from EntroLab. I am quite reassured now and am looking forward to having some testing done on our children. We can't afford to have everyone tested right now, but will test those who are especially " suspicious " now and save up money to have others tested later.

You have been a wealth of information ~ thanks again!

in MO-- So glad to be Tom's wife and Mommy to Micah (dd-17), Nate (15), Hannah (13), (11), Gabe (10), Abbie (9), Caleb (7), (6), Josiah (5), (3), and (19 mos.)