Prometheus Vs. Enterolab Testing

[High-Tech Mom]

My daughter has both DQ2 and DQ8, and my test was supposedly negative for the genes. The testing was done by Prometheus Labs. When the results were questioned the response was "every test has a 30% error rate, could still be an undetectable gene, and genes mutate". I tend to think the tests aren't that accurate, because this test was supposed to be 98% accurate.

L.

For those of you who have gone through a myriad of testing, what's your experience with the accuracy of Prometheus Lab's and Entero Lab's results?

My child had Prometheus Lab's CeliaGene test performed 1 1/2 years ago, and it came back negative. When his symptoms did not resolve, he was re-tested and the genetic blood test came back positive. After this mistake, I do not have much confidence in Prometheus Lab's testing, even if they are considered the premier lab for celiac gene testing.

Alternatively, what is the concensus regarding Entero Lab's testing? We're considering ordering the Entero stool tests, especially since the lab offers the malabsorption test which will allow us to benchmarch progress over time without having a biopsy. What do you think of this approach?

[gfp]

Sorry, its not so much an answer but a question!

What on earth could convince a testing lab that Promethius is a good name...?

It reminds me of the meaning of life "we've come for your liver sir!"

[NoGluGirl]

For those of you who have gone through a myriad of testing, what's your experience with the accuracy of Prometheus Lab's and Entero Lab's results?

My child had Prometheus Lab's CeliaGene test performed 1 1/2 years ago, and it came back negative. When his symptoms did not resolve, he was re-tested and the genetic blood test came back positive. After this mistake, I do not have much confidence in Prometheus Lab's testing, even if they are considered the premier lab for celiac gene testing.

Alternatively, what is the concensus regarding Entero Lab's testing? We're considering ordering the Entero stool tests, especially since the lab offers the malabsorption test which will allow us to benchmarch progress over time without having a biopsy. What do you think of this approach?

Dear High-Tech Mom,

I had testing done that was similar to this, except without the genetic component. This was about 5 and a half years ago. I was told I was not a Celiac. However, this year, I noticed I was bloated and cramping and nauseous with severe reflux after eating oatmeal, bread, or cereal. I recently began going to a holistic physician and she told me that you can be sensitive to gluten and not be a Celiac, but still receive the same symptoms. The reaction is the same, though the actual allergy to wheat is not present, sensitivity to gluten is, but missed by bloodwork. There really is no test that is most definitive when it comes to Celiac according to my research. ELISA was said to be very inaccurate in the past. The best thing to do is just go gluten-free and see how you do.

Sincerely,

NoGluGirl

[High-Tech Mom]

Dear High-Tech Mom,

I had testing done that was similar to this, except without the genetic component. This was about 5 and a half years ago. I was told I was not a Celiac. However, this year, I noticed I was bloated and cramping and nauseous with severe reflux after eating oatmeal, bread, or cereal. I recently began going to a holistic physician and she told me that you can be sensitive to gluten and not be a Celiac, but still receive the same symptoms. The reaction is the same, though the actual allergy to wheat is not present, sensitivity to gluten is, but missed by bloodwork. There really is no test that is most definitive when it comes to Celiac according to my research. ELISA was said to be very inaccurate in the past. The best thing to do is just go gluten-free and see how you do.

Sincerely,

NoGluGirl

I can understand why the antibodies tests would change over time, as we experienced this in my child's bloodwork also. However, genetics don't change. There was a blatent mistake with the Prometheus genetics bloodwork. I'm very frustrated with the inconsistancy of the bloodwork and the hit-or-miss nature of bioposy. EnteroLab seems to have a new outlook on this disease that is in the patient's best interest.

So why hasn't the medical establishment (at least in the U.S.) embraced Dr. Fine's breakthroughs with stool testing?

Why does the medical establishment rely on Prometheus labwork results if they aren't reliable?

Is EnteroLab's approach gaining popularity with celiac and gluten-intolerant patients because the medical establishment has failed to address the needs of people suffering from this disease?

[AndreaB]

I had my family (minus infant) tested by enterolab because of all the good things I had read about them. I am very satisfied with them. From what I understand they test for and recognize more genes. They include gluten sensitive genes. Our results are in our sig....our oldest son even had mild malabsorption. We are a family that didn't have obvious signs but now when we get glutened we know it.

I would highly recommend enterolab and plan on getting my youngest son tested sometime in the next year. I'm curious as to what gene combination he got.

[CarlaB]

So why hasn't the medical establishment (at least in the U.S.) embraced Dr. Fine's breakthroughs with stool testing?

Is EnteroLab's approach gaining popularity with celiac and gluten-intolerant patients because the medical establishment has failed to address the needs of people suffering from this disease?

I think it's not embraced for a few reasons ... first, he's not yet published his research, which I hear is coming soon ... second, I understand his methods are patented, which means he's going to be the only one making money off them for a long time. Much of our medical care, at least in the States, is dictated by $ -- either fear of lawsuits, so follow the accepted protocol no matter what common sense says, or no big pharmaceutical company backing the publicity of the new method among the doctors.

I was very happy with Enterolab's service. The results were in line with my symptoms.

[High-Tech Mom]

Thank you all for your insight and feedback. This has helped us with decisions regarding how to proceed with testing for our children. It's easier making the decision for ourselves than it is for the kids. We will most likely order the Entero tests. I'm very excited to hear that Dr. Fine will be publishing results and hopefully soon.

[penguin]

Sorry, its not so much an answer but a question!

What on earth could convince a testing lab that Promethius is a good name...?

It reminds me of the meaning of life "we've come for your liver sir!"

I'm not any help either...

But I've thought the same thing! Nothing like a teenaged immortal chained to a cliff to signal good health

[momandgirls]

In my opinion, he's not "embraced" because he has not been published and because he isn't affiliated with a well established and respected medical school/university and/or medical center/hospital.

[LKelly8]

In my opinion, he's not "embraced" because he has not been published and because he isn't affiliated with a well established and respected medical school/university and/or medical center/hospital.

I agree. While I like his ideas, (I hope he's right) the fact that he hasn't published - and hasn't he been saying for years that he's "about to publish"? - and he's taken out a patent, which means $$$ for him.

That makes me nervous.

[NoGluGirl]

I can understand why the antibodies tests would change over time, as we experienced this in my child's bloodwork also. However, genetics don't change. There was a blatent mistake with the Prometheus genetics bloodwork. I'm very frustrated with the inconsistancy of the bloodwork and the hit-or-miss nature of bioposy. EnteroLab seems to have a new outlook on this disease that is in the patient's best interest.

So why hasn't the medical establishment (at least in the U.S.) embraced Dr. Fine's breakthroughs with stool testing?

Why does the medical establishment rely on Prometheus labwork results if they aren't reliable?

Is EnteroLab's approach gaining popularity with celiac and gluten-intolerant patients because the medical establishment has failed to address the needs of people suffering from this disease?

Dear Hi-Tech Mom,

I think you hit the nail on the head! They just do not seem that interested in our problem. They are too busy getting a new Mercedes with all the money we fork over for unreliable testing. I should own the entire medical arts building with as much as we spent! Prometheus is definitely not the best for the patient. Some doctors may not know of the other options Enterolab has. The tests I had done are not that useful. The genetic testing would be interesting if I could afford it. Stool testing has been scoffed at a lot. One has to wonder why there is such opposition to simpler, more accurate techniques of diagnostics such as this.

Sincerely,

NoGluGirl

[Nic]

Just out of curiosity, has anyone tested with enterolab and it came back negative? Of course I understand that most of the people on this forum either have Celiac or have a loved one who does, or both. But I am curious to hear if maybe some people tested their families and some did come back negative. My youngest son and I have both had negative blood work (antibodies, not genes). I assumed I must have the genes if my son does, am I wrong to assume that? I will be looking into it farther though.

Nicole

[CarlaB]

Just out of curiosity, has anyone tested with enterolab and it came back negative? Of course I understand that most of the people on this forum either have Celiac or have a loved one who does, or both. But I am curious to hear if maybe some people tested their families and some did come back negative. My youngest son and I have both had negative blood work (antibodies, not genes). I assumed I must have the genes if my son does, am I wrong to assume that? I will be looking into it farther though.

Nicole

One daughter and I came out positive, the other negative. The test results corresponded to the symptoms, too.

I don't care if Dr. Fine has a patent and is making money. If he doesn't want to affiliate with a big organization for the same reasons we don't trust them, and he's come up with a way to make many healthy, I happily give him my money. He's earned it! If he didn't need the backing of a big university to do his research, good for him! Maybe we'd have some more original thinking in the medical world if more people could independently do what he's done.

[AndreaB]

Out of the four of us tested by enterolab, one came back negative (my husband, although he has 2 celiac genes). We all didn't have symptoms and I was tested due to allergies that I found out about. Now if we get glutened we know it. The whole family is gluten free.

If I had not had allergy testing done and gone on to enterolab who knows how sick we would have gotten. I was gluten light for 1 1/2 months so blood testing would have been a mute point. My oldest son has mild malabsorption already and we had no clue.

[Nic]

I was gluten light for 1 1/2 months so blood testing would have been a mute point.

How gluten light were you? I just had my blood tested and I tested negative. I eat about 50% gluten free. Breakfast is ususally cereal which is made from corn but does have barley malt extract in it (not exactly sure how much gluten is in there), lunch is usually at work and always containing gluten, dinner at home with kids, always gluten free so I am not cooking different meals for my son and then for us. Any snack food in the house is gluten free. So I get a good combination. I am wondering if I should have eaten all gluten before the blood work.

Nicole

[CarlaB]

My blood work came out negative, but then I found out all they tested for was IgA. I was eating only gluten that is not obvious. I was not eating bread, pasta, etc.

[AndreaB]

How gluten light were you?

Very.

The only thing I wasn't allergic to were oats and barley. I maybe had cereal 1-3x week which had oats/barley/corn or combinations thereof. I mainly eat rice. I was drinking rice dream milk which has the barley enzyme and would have granola once in awhile or oatmeal. I would have the rice dream every day to help with calcium. My son's eczema had cleared up almost all the way when I cut out soy and most gluten so I knew we were heading the right direction. It got to the point that I would start having stomach aches when I even had the oats or milk, that was just before we got our enterolab results back.

I switched to two big meals a day partly because I am not a cereal fan and once all the other grains were cut out I was at a loss of what to eat if I had three meals. I am also gliadin allergic (upper low) so don't eat much in the way of bread.

If you can swing enterolab I would highly encourage it if you want some more definitive numbers. Their gene testing would be the minimum. I got the whole panel which at the time included dairy (still might) and the soy/egg/yeast panel.

If you are satisfied going totally gluten free without knowing your genes etc, then by all means do though.

[Nancym]

You could possibly search the forums and find how many people posted that they had negative results. This question comes up at least once a week.

Dr. Fine has results that are going to upset a lot of apple carts when he publishes. He's going to have a long, ardurous journey proving his method against the established beliefs. He knows this so he's working hard to make sure he's covered his bases when he does publish. Wheat is such a staple in our diets and we've come to revere it and consider it the most wholesome of foods. So... what if it isn't for many people? Hopefully we can all see who would be upset over this: People who make money treating those with chronic ailments, people who raise wheat, people who export it, poor people who depend on it for cheap food... yikes.

In the meantime, he knew he could help a lot of people by offering this service, while accumulating lots and lots of data.

Go to Enterolab.com, read his CV, read his essay, read his lecture slides and see if it all makes sense. It did to me.

And, if you ever get a chance, go hear him speak! It is a treat.

[KaitiUSA]

I am for Prometheus because they are an awesome lab for the celiac testing and doctors actually accept those results too. They are very accurate and test for alot. One of the best labs in the US for it. Enterolab testing is also good , even though I have not had it done I would recommend it from everything I have heard about it.

[c2shopping]

I came back postitive at enterolab (two positive genes).

My brother (different last name, and different state so they wouldn't think to connect us) came back negative, but with one positive gene.

Since the genetics fit, it gave me further proof they might know what they were talking about.

[ShayFL]

Their genetic testing is accurate.

[larry mac]

Please note that this thread is over two years old.

Get a good gastroenterologist (granted, hard to find, but they are out there) and an endoscopy. I've seen too many posts on here from people that got results from Enterolab indicating allergies and/or intolerances to everything under the sun. I smell a quack.

best regards, lm