I Ordered My Enterolab Test....

[CarlaB]

I was afraid the DHL guy would see the Enterolab address and just know what was in the box.....

LOL, like he's ever heard of the place!!

[JerryK]

Oh yeah, they are now piloting the use of UPS as the carrier of their "stuff". Hopefully they'll

not have a clue. I hope I can get this "business" done this weekend:)

[JenKuz]

Hi Jerry--

For what it's worth, last Thanksgiving I was not yet gluten free. After a breakfast of rolls, lunch of crackers, and dinner of bread and stuffing, and a midnight snack of a giant bagel from grand central station, I woke up running to the bathroom to puke. I thought it was food poisoning at the time. My friend had eaten all the same stuff, however, and she was *just fine*. Go figure. When I put two and two together, months later, i realized that ALL my many instances of "food poisoning" were on just such abnormally high-wheat days...

But I'm now 5 weeks gluten-free and feeling fantastic already

[CarlaB]

Oh yeah, they are now piloting the use of UPS as the carrier of their "stuff". Hopefully they'll

not have a clue. I hope I can get this "business" done this weekend:)

It makes sense they'd use the brown trucks for it!!!

[JerryK]

It makes sense they'd use the brown trucks for it!!!

Good one!!!

[gadgetgirl]

OK, so seriously, I'm a little leery of Enterolab. I know they are not mainstream medicine. I see a few

threads here that talk about Celiac and question the validity of a stool test diagnoses. So, if this guy tells me I'm positive, do I base my entire life style, for the rest of my life, on this one guy's opinion?

Jerry, I did the Enterolab and got positive results. I immediately cut out gluten, casien, soy and yeast based on these results. And while I felt a lot better, something was still not right. So I had ELISA testing (blood) done through York laboratories. That showed me that I was also sensitive to almonds (was eating almond butter every day!) and shellfish (um, that would be where the glucosamine supplement came from).

But most importantly, the ELISA test showed a positive reaction to gluten, casein and yeast so that helped me to accept that the Enterolab results were valid for me no matter what I have read in other postings.

Now that I have ALL of these items out of my diet and my personal care items, I feel great on a daily basis. And, yes, I accept that this will be for the rest of my life.

Keep us posted on your results and dietary response.

[eleep]

Hi Jerry--

For what it's worth, last Thanksgiving I was not yet gluten free. After a breakfast of rolls, lunch of crackers, and dinner of bread and stuffing, and a midnight snack of a giant bagel from grand central station, I woke up running to the bathroom to puke. I thought it was food poisoning at the time. My friend had eaten all the same stuff, however, and she was *just fine*. Go figure. When I put two and two together, months later, i realized that ALL my many instances of "food poisoning" were on just such abnormally high-wheat days...

But I'm now 5 weeks gluten-free and feeling fantastic already

This just makes me giggle -- I have friends who used to affectionately call me "the puker" -- although there never seemed to be any rhyme or reason to what would set me off....

[JerryK]

Of course today (stop reading right now if you don't want too much info) I poo'd FIVE times.

My little kool whip container is at home, where of course I will be unable to use...probably for

days...since I'm usually at work.

[CarlaB]

LOL, I drank a large cup of coffee to get favorable, immediate results.

Oh, I had another thought ... you could take it with you and go for a run!!!

[JenKuz]

So my cool whip container and shipping stuff came yesterday evening. Yaay, I am so looking forwards to

using it. Just like those Cialis commercials, I'll have to wait until "the time is right". I'm certainly not going to do this at work;)

OK, so seriously, I'm a little leery of Enterolab. I know they are not mainstream medicine. I see a few

threads here that talk about Celiac and question the validity of a stool test diagnoses. So, if this guy tells me I'm positive, do I base my entire life style, for the rest of my life, on this one guy's opinion?

Just thinking out loud here...and I certainly want to hear opinions on this subject.

Hey Jerry,

Not that it means much, but I have training in epidemiology and also have run many an assay myself in my days in the lab. I vetted enterolab pretty thoroughly, based on what I know of these tests, before sending them my hard-earned dollars.

The truth is, enterolab *is* mainstream. The assays they do for anti-gliadin antibodies and anti-tissue transglutaminase antibodies are *exactly the same* as the the blood test. They use the same reagents, the same antibodies, its the same exact test. It's just that they test poo instead of blood. The rationale for this is straightforward. These antibodies are of the IgA variety. They are manufactured in the gut, and are found in much higher volume in the gut. When they get into the blood, it's a sign of high immune activity; but their precense in feces is basically conclusive. So, if you test poo, and it's positive, you probably have a problem. If you test poo and it's negative, you are a step closer to ruling out gluten as a problem. If you test blood and it's positive, you definitely have a problem. If you test blood and it's negative, it tells you flat nothing.

Before I did the test, I asked the lab about potential for cross-reacitivity, and there is none.

Essentially, this is a fully mainstream test--but much more sensitive than the current standard test. Because he is still collecting data, Dr. Fine hasn't published yet, which is why the test is not widely well-received or available. However, if you look at his Curriculum Vitae, this doctor has published fairly widely in some tip-top peer-review journals, and he has I believe three nice grants from NIH for his work on microscopic colitis.

Another benefit to doing testing with Enterolab is a bit practical and cynical, but it's worked for me. I spent lots of money on many invasive tests, and all I got was, "take more drugs." I did enterolab, cut out wheat, and my problems have fully resolved. But I was able to resolve them *without* a diagnosis going into my medical record...meaning *no* higher premiums and *no* preexisting conditions.

At the time, I was irritated with my GI doc for being bull-headed and not doing the proper tests (he put me through a full endoscopy and colonoscopy, both, and then decided while he was in there, with me under anasthesia, that he wouldn't take any but one biopsy after all, so he never actually ran the tests that would have diagnosed celiac damage...why I paid the money and underwent the risk and lost three days of work time, I don't know...) In the end, though, I'm actually glad I don't have the official diagnosis. I can make the necessary changes in my life, and my friends and family understand and have seen the change in my demeanor and symptoms, so they're all on board. And no insurance ramifications! Whee!

[JerryK]

LOL, I drank a large cup of coffee to get favorable, immediate results.

Oh, I had another thought ... you could take it with you and go for a run!!!

Ok, now you've made me spit my morning coffee all over my screen.

[happygirl]

Jerry--I've forgotten, did you have the "traditional" bloodwork done?

Also, I would be on the fence of saying if he is mainstream yet. (I tested positive via traditional bloodwork, and then later on used enterolab for their other food testing and gene testing). Some of the main Celiac experts: Dr. Green at Columbia and Dr. Fasano at UMD-B have all said that this method is not the most accurate. I am not arguing for or against if he is right ... I tested positive on both! All I wanted to add is that the Celiac experts (not gluten intolerance experts, but Celiac experts!) do not agree and have said that his test results have yet to be replicated. I certainly hope that his research, if valid, is published so that we can hear what others have to say about it. I know that there is a lot lacking in the celiac/gluten intolerance world, and I hope this is at least part of the puzzle!

[JerryK]

Thanks for the info. I am glad I'm doing the test. It will be interesting to see the results.

On a side note, it says in the Enterolab instructions "Pass one complete BM into the container".

Without getting too graphic...exactly HOW MUCH is that? Depending on the day...it could be...really small or really BIG. How do I know if I've supplied the right amount? Exactly HOW does one quantify a "complete BM" as opposed to an incomplete one? What about those days when you never seem to STOP going....do you fill the container to the brim??

Sorry, but they are really vague on the idea of completeness I guess I'll have to use my best judgement...

Hey Jerry,

Not that it means much, but I have training in epidemiology and also have run many an assay myself in my days in the lab. I vetted enterolab pretty thoroughly, based on what I know of these tests, before sending them my hard-earned dollars.

The truth is, enterolab *is* mainstream. The assays they do for anti-gliadin antibodies and anti-tissue transglutaminase antibodies are *exactly the same* as the the blood test. They use the same reagents, the same antibodies, its the same exact test. It's just that they test poo instead of blood. The rationale for this is straightforward. These antibodies are of the IgA variety. They are manufactured in the gut, and are found in much higher volume in the gut. When they get into the blood, it's a sign of high immune activity; but their precense in feces is basically conclusive. So, if you test poo, and it's positive, you probably have a problem. If you test poo and it's negative, you are a step closer to ruling out gluten as a problem. If you test blood and it's positive, you definitely have a problem. If you test blood and it's negative, it tells you flat nothing.

Before I did the test, I asked the lab about potential for cross-reacitivity, and there is none.

Essentially, this is a fully mainstream test--but much more sensitive than the current standard test. Because he is still collecting data, Dr. Fine hasn't published yet, which is why the test is not widely well-received or available. However, if you look at his Curriculum Vitae, this doctor has published fairly widely in some tip-top peer-review journals, and he has I believe three nice grants from NIH for his work on microscopic colitis.

Another benefit to doing testing with Enterolab is a bit practical and cynical, but it's worked for me. I spent lots of money on many invasive tests, and all I got was, "take more drugs." I did enterolab, cut out wheat, and my p roblems have fully resolved. But I was able to resolve them *without* a diagnosis going into my medical record...meaning *no* higher premiums and *no* preexisting conditions.

At the time, I was irritated with my GI doc for being bull-headed and not doing the proper tests (he put me through a full endoscopy and colonoscopy, both, and then decided while he was in there, with me under anasthesia, that he wouldn't take any but one biopsy after all, so he never actually ran the tests that would have diagnosed celiac damage...why I paid the money and underwent the risk and lost three days of work time, I don't know...) In the end, though, I'm actually glad I don't have the official diagnosis. I can make the necessary changes in my life, and my friends and family understand and have seen the change in my demeanor and symptoms, so they're all on board. And no insurance ramifications! Whee!

[JenKuz]

Jerry--I've forgotten, did you have the "traditional" bloodwork done?

Also, I would be on the fence of saying if he is mainstream yet. (I tested positive via traditional bloodwork, and then later on used enterolab for their other food testing and gene testing). Some of the main Celiac experts: Dr. Green at Columbia and Dr. Fasano at UMD-B have all said that this method is not the most accurate. I am not arguing for or against if he is right ... I tested positive on both! All I wanted to add is that the Celiac experts (not gluten intolerance experts, but Celiac experts!) do not agree and have said that his test results have yet to be replicated. I certainly hope that his research, if valid, is published so that we can hear what others have to say about it. I know that there is a lot lacking in the celiac/gluten intolerance world, and I hope this is at least part of the puzzle!

I guess it depends on how you're defining "mainstream." I know many people don't recognize the results yet...but I said it is mainstream, because it's completely in line with current standard practices--it's not wacky or biologically implausible. It's the same darn test, even if it isn't recognized yet.

I'm not sure how Drs. Green and Fasano would evaluate the accuracy of the test before any epidemiologic data has been published.... anyhow, "accuracy" isn't a very meaningful word. Accuracy is measured in both sensitivity and specificity. Often an improvement in sensitivity results in a decrease in specificity. I think that may be the case with Dr. Fine's tests. A significant improvement in the sensitivity probably resulted in a slight decrease in the specificity, but my guess is that the specificity is still quite high. There is very little cross-reactivity between the antibodies in the assay and molecules that aren't the antibodies being studies. That fact is very well established, given how extensively these test have been used with blood and in experiments with intestinal lavage. So the specificity should not be changed much at all by using stool, while the sensitivity would go up. Hence: if Green and Fasano are arguing that enterolab's tests aren't good, they are de facto arguing that the blood tests are also no good...but in fact evidence shows these tests are highly specific, just not sensitive enough!

Another issue is that currently the tests will be evaluated based on their ability to predict current actual villous damage...That's how most docs would evaluate their sensitivity. If you looked instead and response to dietary change, the sensitivity measure you'd get would be quite different. Dr. Fine argues that his tests can predict intolerances before extensive damage is done. So in my case, I have no villous atrophy at this point. But I have antibodies, I have malabsorption, I have symptoms, and I am genetically predisposed. By following the standard testing procedure, I would most likely have to get sicker and sicker for the next 10 years before they identified my problems. But they would surely know for certain what it was

[JerryK]

The reason I didn't go to my HMO to be tested, is I simply doubt their ability to diagnose me, until

as you say below, "it would be 10 years until they are able to diagnose my problem"...

Now if Enterolab's tests come back with really high levels of antibodies, then I'll go to my HMO and

request blood work, just to see if it correlates. Otherwise, I think my HMOs ability to diagnose anything is somewhat suspect...

I guess it depends on how you're defining "mainstream." I know many people don't recognize the results yet...but I said it is mainstream, because it's completely in line with current standard practices--it's not wacky or biologically implausible. It's the same darn test, even if it isn't recognized yet.

I'm not sure how Drs. Green and Fasano would evaluate the accuracy of the test before any epidemiologic data has been published.... anyhow, "accuracy" isn't a very meaningful word. Accuracy is measured in both sensitivity and specificity. Often an improvement in sensitivity results in a decrease in specificity. I think that may be the case with Dr. Fine's tests. A significant improvement in the sensitivity probably resulted in a slight decrease in the specificity, but my guess is that the specificity is still quite high. There is very little cross-reactivity between the antibodies in the assay and molecules that aren't the antibodies being studies. That fact is very well established, given how extensively these test have been used with blood and in experiments with intestinal lavage. So the specificity should not be changed much at all by using stool, while the sensitivity would go up. Hence: if Green and Fasano are arguing that enterolab's tests aren't good, they are de facto arguing that the blood tests are also no good...but in fact evidence shows these tests are highly specific, just not sensitive enough!

Another issue is that currently the tests will be evaluated based on their ability to predict current actual villous damage...That's how most docs would evaluate their sensitivity. If you looked instead and response to dietary change, the sensitivity measure you'd get would be quite different. Dr. Fine argues that his tests can predict intolerances before extensive damage is done. So in my case, I have no villous atrophy at this point. But I have antibodies, I have malabsorption, I have symptoms, and I am genetically predisposed. By following the standard testing procedure, I would most likely have to get sicker and sicker for the next 10 years before they identified my problems. But they would surely know for certain what it was

[happygirl]

Interesting. Is it because you don't think they wouldn't order the blood tests? All you need is the testing, get a copy of your results, and never have to go back (that is what I have often done, because I have the innate ability to find crappy doctors) I don't blame you for wanting something to start with!!!!! I hope you find some answers and get better!

[JerryK]

Interesting. Is it because you don't think they wouldn't order the blood tests? All you need is the testing, get a copy of your results, and never have to go back (that is what I have often done, because I have the innate ability to find crappy doctors) I don't blame you for wanting something to start with!!!!! I hope you find some answers and get better!

It's because I have Kaiser...they MIGHT diagnose me if I had blood running out of multiple orifices.

Kaiser isn't there to make you feel better. They will attempt to keep you from dying but that is

about it. He says scarcastically...

[lonewolf]

Thanks for the info. I am glad I'm doing the test. It will be interesting to see the results.

On a side note, it says in the Enterolab instructions "Pass one complete BM into the container".

Without getting too graphic...exactly HOW MUCH is that? Depending on the day...it could be...really small or really BIG. How do I know if I've supplied the right amount? Exactly HOW does one quantify a "complete BM" as opposed to an incomplete one? What about those days when you never seem to STOP going....do you fill the container to the brim??

Sorry, but they are really vague on the idea of completeness I guess I'll have to use my best judgement...

Not to be too graphic, but you have to be careful. It can only weigh a pound. My son overdid it a bit and I had to remove some You do NOT want to have to do this. (Especially if it is already frozen )

[JenKuz]

It's because I have Kaiser...they MIGHT diagnose me if I had blood running out of multiple orifices.

Kaiser isn't there to make you feel better. They will attempt to keep you from dying but that is

about it. He says scarcastically...

Ugh...sounds awful. My student insurance through Aetna is not so hot either, hence my glee at having no official diagnosis .

If you haven't ordered genetic tests to go along with your stool panel, I recommend it. It's a very good way to evaluate probability of specific kinds of problems, and also to help understand the risks your children may face.

My genotype told me that my problems are pretty clearly gluten sensitivity, with higher than average risk for developing celiac with actual villous atrophy. This means I can chalk my symptoms up to gluten-related damage. Because of this genetic profile, it's very important that I be strict as can be about keeping out all gluten. I also know that because my DQ7 acts a lot like a DQ8, that *all* children I have (one day) will be at risk for developing celiac, though the risk is unknowable from the current epidemiologic studies. If I had, say, a non-celiac gluten-sensitivity gene, and a normal gene, I would probably base more of my decision making on empirical observations based on response to diet, rather than a categorical decision to cut out gluten for ever and ever. So. I guess, they don't tell you anything more conclusive than the celiac stool panel, but they do help build a clearer picture of what's going on, and what your risk is (and your family's risk is) for particular kinds of outcomes.

As it turns out, after conferring with enterolabs, not only did my gi doc not take biopsies, he also didn't even scope enough of my intestine to say ANYTHING at all. And I was worried about the cost of enterolabs tests...now I'm kicking myself for bothering to pay for those scopies. They cost a lot more, too...

[bklynceliac]

jerry i believe somewhere on the Enterolab site it says at least 1/2 cup for the specimen. You may want to double check though. Obviously the worst thing would be to send them something and have them say it wasn't enough....

[Guhlia]

It's at least 1/2 a cup. That's what they say in the directions. Maybe my directions are different since they're for a toddler...

[Nancym]

I love these technical discussions that Enterolab seems to spawn.

[jerseyangel]

I love these technical discussions that Enterolab seems to spawn.

[Rachel--24]

It's because I have Kaiser...they MIGHT diagnose me if I had blood running out of multiple orifices.

Kaiser isn't there to make you feel better. They will attempt to keep you from dying but that is

about it. He says scarcastically...

LOL....its so true!! They wont do anything.....Kaiser sucks.

When I got down to 94 lbs. I sat in my Dr.'s office crying....telling him that I was really scared because I was still losing weight and I was getting worse no matter what I ate.

He just shrugged and said "I'm not worried....all of your bloodwork is normal so its not like you're gonna die or anything....just eat more." Then he added..."Yeah...I've had a couple people die on me.....so dont lose any more weight...just make sure you eat....ok....I dont want you keeling over."

And this guy was the BEST doctor I could find there!

[JerryK]

Yep they call the person that graduates number 1 in their class "doctor" they call the one that graduates last---"doctor". Which one do you think works for Kaiser? Sorry to any Kaiser physicians that are members of this board:)

To be fair, when you get that kind of volume coming thru your office, it would be difficult for anyone....

They especially do not like patients that do their homework...they want you to be compliant and take your medicine...don't think for yourself

LOL....its so true!! They wont do anything.....Kaiser sucks.

When I got down to 94 lbs. I sat in my Dr.'s office crying....telling him that I was really scared because I was still losing weight and I was getting worse no matter what I ate.

He just shrugged and said "I'm not worried....all of your bloodwork is normal so its not like you're gonna die or anything....just eat more." Then he added..."Yeah...I've had a couple people die on me.....so dont lose any more weight...just make sure you eat....ok....I dont want you keeling over."

And this guy was the BEST doctor I could find there!