Are Enterolab Tests Ever False Positive?

[dennymel]

Hi all,

I got my results back today and I am gluten sensitive. Can I be SURE these tests are right? Are there false positives?

[CarlaB]

I'm wondering myself. I know gluten makes me sick, but I got off dairy for months and have been challenging it lately. Today I had an eggnog latte and some gluten-free pasta with cheese. I've had no problems whatssoever and this is the third or fourth time I've challenged it. My dairy results were NOT borderline either.

Gluten does make me sick, however.

[Nantzie]

Would you be comfortable posting your results? We could probably be more helpful with more information. There is controversy about going just by the genetics because it seems like most people (at least the ones who are on this board have at least two copies of the gluten sensitive genes, which may not be very helpful in figuring out if you have an active gluten intolerance), but the fecal tests seem to be pretty accurate.

Nancy

[dennymel]

Would you be comfortable posting your results? We could probably be more helpful with more information. There is controversy about going just by the genetics because it seems like most people (at least the ones who are on this board have at least two copies of the gluten sensitive genes, which may not be very helpful in figuring out if you have an active gluten intolerance), but the fecal tests seem to be pretty accurate.

Nancy

Sure,

I didn't do the gene part of the test ($$$)

Fecal Antigliadin IgA 64 (normal range <10)

Fecal Antitissue Transglutaminase IgA 33 (normal range <10)

Quantitative Microscopic Fecal Fat Score-NORMAL <300 units

I'm wondering myself. I know gluten makes me sick, but I got off dairy for months and have been challenging it lately. Today I had an eggnog latte and some gluten-free pasta with cheese. I've had no problems whatssoever and this is the third or fourth time I've challenged it. My dairy results were NOT borderline either.

Gluten does make me sick, however.

That's odd. I keep worrying that it's a scam for them to make money. Maybe I don't want to admit I'm really sick...?

Maybe you're only allergic to certain dairies. I can eat cheese, eggs, but NO milk, ice cream or I get ill. But oddly enough since I've gone gluten free, I ate ice cream the other day with no problems...? egad...

[CarlaB]

Well, the test said I was intolerant to casein.

I would try the gluten-free diet if I were you and let the dietary response confirm your result. If you're not strict with it, it will do no good, so eliminate 100% of the gluten and see what happens. After a few months, eat some gluten again to challenge it and notice again how you feel. That way you have a solid test of your dietary response.

[Nancym]

He's done a lot of work correlating symptoms to results, and then following up to see if the gluten-free diet worked. His results are quite good. I think he's got a slide on how many fail to respond to the diet and it ain't much. Even more surprisingly he's had a few people test negative that felt better on the diet.

I'm sure if you sent an email they could tell you more about false postives or negatives.

[Nantzie]

I did JUST the gene test. I had already done some trials of the gluten free diet and knew for sure that gluten was my problem. My husband thougth I was off on another health kick and wasn't being supportive. I did the genetic test (showed gluten sensitivity, not celiac) pretty much just to shut him up.

We tested our kids this past summer with just the Fecal Antigliadin IgA test. My 4yo daughter's was 15 and my son's was 41. My daughter was having tummy aches and was always anxious. That went away. My 2yo son didn't seem to have any symptoms, but we tested him because our daughter tested positive. He had a complete personality change. He used to be shy and kind of withdrawn. After going gluten-free, he's a normal goofy, active little 2yo boy.

I would trust your test results and go gluten free. You will never know how gluten effects you personally until you do that. After you're gluten-free for about a month, you can challenge it by eating something with gluten in it (not too much) and you'll have your answer. To be honest, when you first go gluten-free, there are so many times when you accidentally get "glutened" that you'll probably have at least one inadvertant gluten-challenge long before a month is over.

As far as dairy, I had dairy intolerance at first (soy too). I was able to add them both back in eventually. Dairy was hit and miss for a while, but now, about a year later, I don't have any issues with it at all.

Nancy

[bklynceliac]

In short, no. You can't be sure. There has been no peer-testing of his methods. But a lot of his patients swear by enterolab. So, it's a bit of a toss up. I would add however that there aren't a whole lot of medical tests that you can be completely certain about.

[lonewolf]

My son tested negative through Enterolab for gluten sensitivity, so I know they don't tell everyone that they're positive. Funny thing is, my son is doing better on the gluten-free diet, so I don't know what's up. He did show two copies of the same gluten sensitive gene.

[dennymel]

My son tested negative through Enterolab for gluten sensitivity, so I know they don't tell everyone that they're positive. Funny thing is, my son is doing better on the gluten-free diet, so I don't know what's up. He did show two copies of the same gluten sensitive gene.

By the way your doggie, is VERY cute. I often wonder if I handle dry dog food, if that can affect my gluten? I feed them Beneful....

Anyways, I honestly think from gathering data and reading these type boards, that a lot of sick people have allergies to preservatives or chemicals. So going Gluten free sometimes makes them go organic, thus the relief in symptoms. Either way, if you feel better, go with it. I'm going to work on honing in on the other things that might be making me sick also. I didn't get a Casein screening, or Soy. I will start removing these from my diet and keeping a diary of how I feel. Do you think I should get the gene test after the diagnosis of the Gluten Sensitivity? Or is it a waste of money at this point?

[CarlaB]

By the way your doggie, is VERY cute. I often wonder if I handle dry dog food, if that can affect my gluten? I feed them Beneful....

Anyways, I honestly think from gathering data and reading these type boards, that a lot of sick people have allergies to preservatives or chemicals. So going Gluten free sometimes makes them go organic, thus the relief in symptoms. Either way, if you feel better, go with it. I'm going to work on honing in on the other things that might be making me sick also. I didn't get a Casein screening, or Soy. I will start removing these from my diet and keeping a diary of how I feel. Do you think I should get the gene test after the diagnosis of the Gluten Sensitivity? Or is it a waste of money at this point?

I actually went organic and healthy years before I went gluten-free, but I think what you say is true for many. I was always considered a health food nut before ... I always felt better eating that way.

Some are bothered by the dog food ... dog gets it on his paws, tracks it around the house ...

I would skip the gene test ... I have yet to meet someone who didn't at least have two copies of the gluten sensitive genes ... it would be helpful to confirm you had a celiac gene, though, so it's really your call whether it's worth it to you.

BTW, my daughter also came out negative on the Enterolab test.

[lonewolf]

By the way your doggie, is VERY cute. I often wonder if I handle dry dog food, if that can affect my gluten? I feed them Beneful....

Anyways, I honestly think from gathering data and reading these type boards, that a lot of sick people have allergies to preservatives or chemicals. So going Gluten free sometimes makes them go organic, thus the relief in symptoms. Either way, if you feel better, go with it. I'm going to work on honing in on the other things that might be making me sick also. I didn't get a Casein screening, or Soy. I will start removing these from my diet and keeping a diary of how I feel. Do you think I should get the gene test after the diagnosis of the Gluten Sensitivity? Or is it a waste of money at this point?

Thanks - we think our pup is pretty cute too. He gets mostly raw meat and we only have gluten-free dry food, so I don't have to worry. I think it's a good idea to get gluten-free pet food because their digestive systems aren't really designed to digest wheat anyway - and it's an unneccessary risk for people who are gluten intolerant.

Like Carla, I went organic (mostly) and as chemical free as possible years before going fanatically gluten-free. My kids have been raised that way and two of them still feel better off gluten.

Keeping a food diary is a great idea and much cheaper than paying for testing. As for the gene testing, it's interesting, but I don't think neccessary.

[sunshinen]

Anyways, I honestly think from gathering data and reading these type boards, that a lot of sick people have allergies to preservatives or chemicals. So going Gluten free sometimes makes them go organic, thus the relief in symptoms. Either way, if you feel better, go with it. I'm going to work on honing in on the other things that might be making me sick also. I didn't get a Casein screening, or Soy. I will start removing these from my diet and keeping a diary of how I feel. Do you think I should get the gene test after the diagnosis of the Gluten Sensitivity? Or is it a waste of money at this point?

Yeah, I too, had tried to go to a very healthy diet before going gluten free. Ironically, I eat much worse in this sense than I did before. And I feel better than I thought imagineable after going gluten free.

I do think you should get the gene test. If you have triggered a celiac gene, you really want to know that. I don't think normal fat counts is enough to say that it is "just" gluten sensitivity and not celiac. And if you are not willing to accept Enterolab results, then you should go have the biopsi before you go gluten free. With celiac, you can't cheat. And if you are not convinced, you need to KNOW that this is the problem or you could be putting your health at serious risk. I have seen people who had negative gene results, so I don't think this is a scam. I was also skeptical at first, but Dr. Fine publishes [edited to retract "and seems to be a respected member of the medical community." -- I have seen him treated this way, but it seem like others are saying the lab is not taken seriously, but they are also saying "everyone tests positive" which I know is not the case. I have seen many people reporting negative tests from Enterolab.]

I had an 800% turn around in health. I have terrible results when I make gluten mistakes, and yet I wish I had known about the biopsi gold standard before I went gluten free. Given the dramatic turn around I had, I didn't think I would care. But I find I still want to have excuses for why I don't have to be THAT careful. It's denial, but it's there (even when I'm suffering from a mistake). Knowing I have the gene for celiac helps fight the denial. So I recommend shelling out the money to get as much evidence as you can get.

[CantEvenEatRice]

Does everyone have the 2 gluten sensitivity genes if they do not have a Celiac gene? It just seems that way on this board through Enterolab.

[ravenwoodglass]

"I had an 800% turn around in health. I have terrible results when I make gluten mistakes, and yet I wish I had known about the biopsi gold standard before I went gluten free. Given the dramatic turn around I had, I didn't think I would care. But I find I still want to have excuses for why I don't have to be THAT careful. It's denial, but it's there (even when I'm suffering from a mistake). Knowing I have the gene for celiac helps fight the denial. So I recommend shelling out the money to get as much evidence as you can get."

You really need to be just as careful with a gluten sensitivilty as you do with full blown celiac. Being only sensitive on the gene results does not give a reason to be less cautious or to cheat on the gluten-free diet. As many with only the gluten-free sensitivity genes will tell you you can do just as much harm with 'a little gluten' if you are sensitive as if you are a full blown celiac. Your reaction to the diet should be enough to keep you away.

[CarlaB]

Does everyone have the 2 gluten sensitivity genes if they do not have a Celiac gene? It just seems that way on this board through Enterolab.

We had a thread on this a couple weeks ago, and I believe this was the conclusion we came to -- it seems you either have two gluten sensitive genes, or two celiac genes or one of each ... we couldn't find one person who had a non-gluten sensitive gene.

[Nancym]

There's one genetic combination that Dr. Fine says doesn't correspond to Gluten Sensitivity or Celiac, that's a double DQ4, which is very rare except in Asia.

[chrissy]

everyon keeps referring to the "gluten sensitive" genes that enterolabs has named. is there ANY scientific proof that what dr. fine claims to be the gluten sensitive genes really ARE gluten sensitive genes? i don't think that any other medical institution or celiac research center acknowledges gluten sensitive genes. i kind of think we are back to needing to see his scientific proof, which he refuses to give to anyone. we are involved in a celiac study with a reputable college---university of california, irvine. i asked specifically about gluten sensitive genes, and they do not believe that there are any gluten sensitive genes identified. i am not saying that there aren't people who are non-celiac and gluten sensitive----but the reputable institutions aren't recognizing any gene for it.

[CantEvenEatRice]

everyon keeps referring to the "gluten sensitive" genes that enterolabs has named. is there ANY scientific proof that what dr. fine claims to be the gluten sensitive genes really ARE gluten sensitive genes? i don't think that any other medical institution or celiac research center acknowledges gluten sensitive genes. i kind of think we are back to needing to see his scientific proof, which he refuses to give to anyone. we are involved in a celiac study with a reputable college---university of california, irvine. i asked specifically about gluten sensitive genes, and they do not believe that there are any gluten sensitive genes identified. i am not saying that there aren't people who are non-celiac and gluten sensitive----but the reputable institutions aren't recognizing any gene for it.

This is exactly what I am curious about! If you do not have the actual Celiac genes, can you still have Celiac or gluten intolerance? I just posted a link to the glutensensitivity.net page and there is a story of a girl who has NO Celiac genes, but is a blood and biopsy proven Celiac. So what is the research saying about people who do not have Celiac genes, but seem to be intolerant to gluten? That is what I am so confused about. My son does not have any Celiac genes, but seems to be better on the gluten free diet. However, I question whether I should challenge the gluten at some point since he doesn't have Celiac genes. I am so confused!

[e&j0304]

Actually, there is a woman who posts on this board who has a double copy of DQ-1 which Dr. Fine says is a gluten senstivity gene and she is blood and biopsy proven celiac.

So....who knows?

[Tim-n-VA]

When it comes to statistical tests, I'd avoid saying always or never. With that caveat, I'd be extremely surprised if there was a medical test that didn't have some false results - both negative and positive.

[nikki-uk]

This is exactly what I am curious about! If you do not have the actual Celiac genes, can you still have Celiac or gluten intolerance? I just posted a link to the glutensensitivity.net page and there is a story of a girl who has NO Celiac genes, but is a blood and biopsy proven Celiac. So what is the research saying about people who do not have Celiac genes, but seem to be intolerant to gluten? That is what I am so confused about. My son does not have any Celiac genes, but seems to be better on the gluten free diet. However, I question whether I should challenge the gluten at some point since he doesn't have Celiac genes. I am so confused!

Although there has been two main genes identified to celiac disease I think it's fair to say there may be more genes (or combinations) that as yet have not been discovered.

(Just my opinion though)

[celiacgirls]

Although there has been two main genes identified to celiac disease I think it's fair to say there may be more genes (or combinations) that as yet have not been discovered.

(Just my opinion though)

I agree with this. I have done all of my testing with Enterolab so obviously I believe it is valid. However, as far as the gene testing goes, since he identifies almost all genes as gluten intolerant genes, to me the most valid information I got from him was that I have the DQ8 gene, which is a widely accepted celiac gene.

There is so much that is unkown about celiac disease and gluten intolerance that I think everyone needs to do their own research and come to their own conclusions about their situation if they don't meet the widely accepted standards for celiac. You can believe you should avoid gluten completely to avoid future problems if you are only "gluten intolerant" or you can take your chances that it won't cause future problems and have a little bit now and then or ignore it completely. For us, having even a trace of gluten causes enough noticeable problems that I am willing to avoid it completely for that alone, never mind the whole issue of future problems.

[sunshinen]

You really need to be just as careful with a gluten sensitivilty as you do with full blown celiac. Being only sensitive on the gene results does not give a reason to be less cautious or to cheat on the gluten-free diet. As many with only the gluten-free sensitivity genes will tell you you can do just as much harm with 'a little gluten' if you are sensitive as if you are a full blown celiac. Your reaction to the diet should be enough to keep you away.

It's true that many people with gluten sensitivity have more severe reactions than many with celiac and many need to be just as careful. BUT there are degrees of sensitivity. Many other people are fortunate enough to be able to have some gluten without any negative effects. And unlike celiac, food sensitivities can go away. For example, many of us are sensitive to milk when we are first diagnosed, but that sensitivity often goes away as we heal. When I consider whether to have dairy or not, I know that I can have it as long as I can handle the symptoms; antibodies are not going to start damaging my intestines. With celiac, you can have damage when you have no symptoms.

Yes, a positive reaction to the diet should be enough to keep people away from gluten. I have never intentionally cheated. But as you learn more and more about this, it is often really hard to believe you have to worry about shampoo or kissing someone who has eaten gluten. Denial is powerful, and anything we can do to overcome it is a good thing. We all know how unaccepting many people are of our new, "extreme" diet and having that extra evidence is always nice to have if you can get it. Some people don't have that luxury, and have to base it on dietary response alone. All I'm saying is that it can make things much simpler if you learn as much as possible about what reaction is happening in your body and acquire whatever medically accepted evidence you can to support yourself against the ney-sayers. Knowing whether your reaction is immune, autoimmune, or digestive can make a big difference on what the right course for you is.

To get back to the topic of the thread (sorry to have participated in the hijack) on the reliability of Enterolab, here are some opinions from other doctors:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[sunshinen]

PS. I got these links from Open Original Shared Link, which seems to have a lot of good links to studies and articles related to celiac. So you can see the data and conclusions of researchers rather than just reading people's opinions.