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Yenni

So How Does "the World" Look Upon Enterolab?

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Even though I think it's partially a money thing (even if he's not personally making money off of it, but trying to set something up financially for the business) regarding the timing of releasing studies that would have to define methodology, I don't think he's scamming anyone. I think that the premise of his methodology will eventally be proven, actually, though probably not the threshold values he uses (though again, that's not always due to scientific reasons).

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It would be nice to have more answers, but at the same time, I think he is helping a lot of people. I do question the lab at times just because there is not that much information about his testing available yet. However, I cannot tell you how many doctors completely failed me over the 10 years I searched for a diagnosis. I think Dr. Fine is providing people with the validation they are searching for. I received my diagnosis through bloodwork and when a doctor said Celiac, I had never even heard of it but was soooo excited to have a word for my horrible symptoms. My son just tested positive through Enterolab. I have no problem with Dr. Fine waiting for patents and even making money from the lab. But I do hope he publishes his methods and allows others to check and recheck his testing. The more we all discuss it, hopefully the word will get out.

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Have you guys read his Essay and SlideShow of Research on the EnteroLab page?

He was mentioned as a author of a book in Dangerous Grains too. Or if it was a paper, not a book..

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Guest Kathy Ann

I'm a new celiac. Maybe others of you who have been involved longer have heard it promised before. But his nurse did definitely tell me that he intends to publish before year's end. If that is true and not wishful thinking, we will soon know the truth.

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The problem with Dr. Fine (and this is coming from someone who paid for his tests and am following what the results recommended) is that it's very easy to see a darker side to the situation. Yes, there have been many situations in medical history where important discoveries and procedures were initially viewed as crackpot and dismissed prematurely, but for each of those there are probably 100 where the theories actually WERE crackpot and were the result of quackery. Any internet search will turn up countless sites offering such things. And because all we are really given from Enterolab is a strongly worded essay that can be summed up essentially as "trust me, I'm right", there is NO concrete, factual reason to believe that Dr Fine is above board. He says he has numbers, but any charlatan would. He says he is about to publish, which is of course what anyone trying to mislead people out of their money would promise. Now, you can certainly CHOSE to believe what Enterolab reports to you, and I don't think that's necessarily a foolhardy decision, but I also don't think any of us can say with certainty that it's not. At this point, it's a matter of belief. The medical community does not validate his approach because he's made it impossible for them to do so. Frankly, I don't blame the doctors. As I said before, for every brilliant inivator there's 100 lying cheats, and from a removed doctor's eyes, chances are, Fine's one of them. And I have to say, I have my doubts. People who test positively through enterolab, adopt the gluten-free lifestyle, then remain sick for a long period of time? Or spantaneously get recurring symptoms even when not eating gluten? We often explain it as mysterious cross-contamination or "not being fully healed", but couldn't it be that these people just aren't gluten intolerant to begin with? Couldn't it be something else that's making them ill, and Enterolab results have sent them down a road of false recovery? I honestly don't know, but I think it's a question worth considering. What's more likely, that a bag of cookies labeled gluten-free were cross-contaminated and upset my gluten intolerance that I know have because of an internet lab that the medical community rejects, or that I have IBS that was acting up? Truthfully, I don't really know. It's a personal decision, and I can understand people going either way on it.

For my part, I don't know if I trust Enterolab, but I've been sick enough that I'm willing to give it a shot. Since testing postive for gluten and dairy intolerance, I haven't had a drop of either and *think* I am feeling better. Dr. Fine doesn't immediately strike me as a fake. There seems to be enough independant record of him to suggest he's a reputable doctor. However, I think there's a solid amount of Enterolab to be suspicious of, and if I were going to run a testing scam I would probably do exactly what he's doing with this exact disease. Truth be told, I think Fine's validity is a coin toss, and I think that's an opinion that doesn't get voiced enough on this site. Just because "established" medical practice is stringent and exclusive, that doesn't make it wrong. In fact, it's often what makes it right.

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bklyceliac, you make some very valid points. The only one I really disagree with is the stringent and exclusive medical practices being right! If I had to rely on doctors, who are taught all about disease and nothing about health, to help me regain my health, I'd be sick till the day I died!

We are taking a risk following Enterolab. I was gluten-free after a rotation diet, so conventional testing was inaccurate for me, not only that, it was done wrong. Enterolab did nothing but confirm what I already had figured out. I am getting better. It is a slow process, but there are also biopsy proven celiacs here who take a lot of time to heal. I don't keep getting "glutened", but I am taking time to heal. I am having ups and downs much like I did as I was getting sicker, but this time I'm getting better.

I personally think the conventional tests need to be updated. They let too many of us fall through the cracks with their false negatives.

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Another reason many doctors do not accept Enterolab, according to my doctor, is that if you test the general population who don't have symptoms, 30% of them will test positive for gluten intolerance. That seems too high for most to think is valid. I found my doctor by asking Enterolab for a doctor in my area. He does use Enterolab when the blood tests are negative but he is suspicious of celiac. I hear that his wife is a celiac so he is a GI doctor but also personally familiar with celiac.

what do you mean by suspicious of celiac?

I meant when he thinks it might be a problem with gluten, he does the Enterolab test when the regular blood tests have been negative.

Dr. Fine has a not-for-profit 501©(3) organization called Intestinal Health Institute. About the Enterolab testing, it says that "Proceeds from these tests help defray research costs at the Intestinal Health Institute. " Obviously, he has to pay himself something, too.

It will be interesting to see how it all turns out if/when he publishes. For my family, it has made a huge difference in our lives and we were not even really sick. If it turns out his work is not accepted and is in fact proven to be wrong, I would not go back to eating gluten. I didn't have stomach problems but I feel much better mentally that it just isn't worth eating it.

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CarlaB - clearly you felt it was necessary to step outside of the "accepted" or "established" medical realms to find answers, and I think it's great that you're having success with it. And clearly other people here are doing the same thing. I just think it's important to note that "traditional" medicine has an unbelievable amount to offer and will help people far more often than it won't. I get worried on this site when people have one bad meeting with a gruff GI and then immediately turn their health over to Enterolab. I'm a believer in due dilligence on all fronts.

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CarlaB - clearly you felt it was necessary to step outside of the "accepted" or "established" medical realms to find answers, and I think it's great that you're having success with it. And clearly other people here are doing the same thing. I just think it's important to note that "traditional" medicine has an unbelievable amount to offer and will help people far more often than it won't. I get worried on this site when people have one bad meeting with a gruff GI and then immediately turn their health over to Enterolab. I'm a believer in due dilligence on all fronts.

I don't disagree. I believe medicine has its place, but I believe alternative methods (holistic type stuff, not necessarily Enterolab) has its place, too. Modern medicine is focused on disease, and I was sub-clinical in literally everything. I had no choice but to turn to alternative means, either that or just decline until I did start testing clinically ill. The only time I personally recommend Enterolab is if someone has a clear problem with gluten and tests came out negative, or if someone is already gluten-free as I think a challenge is irresponsible, much in the same way as telling someone with emphysema to smoke to see if it damages their lungs more.

Bad personalities in doctors is no excuse to bash modern medicine .... but when docs tell you that you're healthy when you're not, then it is time to start looking elsewhere.

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It's true that Dr. Fine hasn't presented much factual epidemiologic evidence; but he presents some statistics from his studies on his site.

The first reason I trusted it is because the biological justification seems sound, from what I know of immunology. The second reason is because Dr. Fine's CV is really sound; full of publications with top-level peer-reviewed journals, including NEJM and Gastroenterology. Also, he has two major grants from NIH.

Ultimately, I think he hasn't been running these tests for all that long. Research of the kind he's doing takes years from inception to final analysis, so it's unsurprising that he hasn't published yet. Publication itself generally takes a year or more once the analyses are finished.

I believe him when he says that he is offering the tests now because they are better than the other tests available, and he doesn't want people to have to wait several years before using them, especially if they help people avoid painful and expensive biopsies. Most likely, once he's published his data, his tests will be taken more seriously by the medical establishment. I hope that's the case. Either way, the next couple years will tell whether he's good or not.

As far as the point about IgA being produced to everything we eat, that's partly true, but not really important here. The antibodies Enterolabs tests for are exactly the same as those tested for in the (standard) blood tests. The rationale for testing stool is that the guts are where IgA is made, so a stool test is simply more sensitive. This rationale is based on sound immunologic theory, and also on published data on gut testing for IgA.

Tissue transglutaminase is not a food protein, so anti-bodies to it could not be explained through cross-reactivity with food, or by Ab being made to all foods. It is a self protein, and antibodies to it indicate a clear auto-immune disorder. Gliadin, on the other hand, is a food protein, a component of gluten. So antibodies to it may be a normal product of having consumed it, but they should not appear in high numbers. Antibodies that are made to foods are limited; T-cells specific to foods under normal circumstances (i.e., no intolerance results) should be anergized, severely limiting the amount of antibody that is produced. That's why empircal data on improvement in response to diet is essential for intepreting these results.

Finally, the Ab that are made to all foods are likely to be IgM or IgG, not IgA, as far as I know. So the IgG tests are more sustpect than the IgA tests. In either case, response to diet is the key.

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Wow. I'm keeping myself awake at night stressing over this topic. I am taking info to my FP doc on Monday. I don't want to adjust my son's whole life if I'm not doing the right thing. It's such a huge adjustment, especially for an eight year old. What about ELISA testing? My doctor is willing to order that. Would that confirm the Enterolab results and do you have to be eating gluten in order for it to register an intolerance. I fee like I'm going to have a nervous breakdown dealing w/ all this stuff. I can't think about anything else. I don't want to be missing the boat if my son has Crohn's or something. He had two DQ2 genes, but I know just because you're predisposed doesn't mean you're going to get it. I wish the medical community would recognize it too. I MYSELF feel like a phony and a fraud sometimes. I feel like I self diagnosed my son with this terrible illness and it's tearing me apart. How do they test for Crohn's? Help.

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Wow. I'm keeping myself awake at night stressing over this topic. I am taking info to my FP doc on Monday. I don't want to adjust my son's whole life if I'm not doing the right thing. It's such a huge adjustment, especially for an eight year old. What about ELISA testing? My doctor is willing to order that. Would that confirm the Enterolab results and do you have to be eating gluten in order for it to register an intolerance. I fee like I'm going to have a nervous breakdown dealing w/ all this stuff. I can't think about anything else. I don't want to be missing the boat if my son has Crohn's or something. He had two DQ2 genes, but I know just because you're predisposed doesn't mean you're going to get it. I wish the medical community would recognize it too. I MYSELF feel like a phony and a fraud sometimes. I feel like I self diagnosed my son with this terrible illness and it's tearing me apart. How do they test for Crohn's? Help.

Most doctors accept dietary response even if they don't accept Enterolab. Dietary response is a very valid diagnostic tool. If he's responded to the diet, talk to your doctor about that, too.

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Most doctors accept dietary response even if they don't accept Enterolab. Dietary response is a very valid diagnostic tool. If he's responded to the diet, talk to your doctor about that, too.

Thanks Carla. You always seem to be there for me to offer sound advice. This is a boy that couldn't eat or sleep through the night. Would he have that response if it were Crohn's? I just need to have faith and believe in myself. Sometimes it just seems so serile. I'll be anxious to see what our doc says on Monday. I don't want to put him through any invasive testing if it's not necessary. I'm just a caring mom that wants my kids to get better. Also, everyone doesn't test positive w/ enterolab. My friend's little boy was negative and he responds to a gluten free diet and has D when he goes off it. It's easy to be a skeptic, but I need to follow my gut, and when I came across gluten intolerance all the pieces just fit. The only thing that really puzzles me is that my son't ttg wasn't elevated and one of his main symptoms was mouth sores. I thought that was an autoimmune reaction. Would one of you super smart scientific people give me some insight on this. Thanks! Here's another way to look at Enterolab. I had two doctors run the wrong tests and told me I knew more about it than they did. You're going to trust them to say it's PHONY. No one's perfect, but when you put all your time and effort into something you get passionate for it. Plus, he is an MD just like all the others out there. If everyone ate fruit, veggies, and meat only thing how many other diseases would be cured and how many meds would be eliminated. :):)

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Wow. I'm keeping myself awake at night stressing over this topic. I am taking info to my FP doc on Monday. I don't want to adjust my son's whole life if I'm not doing the right thing. It's such a huge adjustment, especially for an eight year old. What about ELISA testing? My doctor is willing to order that. Would that confirm the Enterolab results and do you have to be eating gluten in order for it to register an intolerance. I fee like I'm going to have a nervous breakdown dealing w/ all this stuff. I can't think about anything else. I don't want to be missing the boat if my son has Crohn's or something. He had two DQ2 genes, but I know just because you're predisposed doesn't mean you're going to get it. I wish the medical community would recognize it too. I MYSELF feel like a phony and a fraud sometimes. I feel like I self diagnosed my son with this terrible illness and it's tearing me apart. How do they test for Crohn's? Help.

Actually, I believe the enterolab tests use the ELISA method. ELISA stands for Enzyme-Linked Immuno-Sorbent Assay. It works like this: plastic plates are used, that have close to 100 little wells, about half a cm across. In the bottoms of these wells are antibodies. Antibodies are shaped like Ys. The tail part binds to the plastic of the plate, while the arms are highly specific to a particular protein. For a given test, say an "anti-gliadin" test, the antibodies in the plate are specific for the shape of human antibodies to gliadin. So a sample of blood, or stool, or saliva, or whatever it happens to be is treated and a very specific amount is put into the well. Usually many samples are tested at once. Along with this, some samples that have a known amount of the antibody are also put in (these are the controls). After the samples sit in the wells, they're washed out. Any antibody from the sample will be stuck to the antibodies on the plate. Usually, then, another antibody in solution is added to the wells. In this case, these antibodies are specific for the antibody being tested for. They usually have a gene spliced into the tail that will cause them to turn a particular color when treated with a specific chemical. So there's a Y in the plate, with Ys stuck to them from the antibody being tested for, then a third Y stuck to each of those, and the third Y will change color.

The chemical is added to the wells (usually called chromogen) and the wells that have a lot of the test antibody will turn a darker or brighter color than the others. The amoung of color is measured, compared to the known amounts, and a number is returned. All the numbers will be relative to the known amounts in the controls.

Here's a link to an animation of this:

http://www.biology.arizona.edu/immunology/.../technique.html

Note: in this picture, they show little proteins stuck to the plate, instead of antibodies. It could be either, depending on the test. So just imagine little Y-shaped antibodies in place of the cubes and spheres.

I contacted Enterolab, and they said that the antibody substrates they use (the antibodies stuck to the plate) are identical to the ones used in the standard blood tests. I imagine the reagent antibodies are, too. So, there's not difference at all between Enterlab gluten panel tests and standard blood tests, except that enterolab samples stool instead of blood. My doctor won't even let me exlain this; he's so unreceptive to the idea, that he hasn't bothered to pay attention to what the test even *is*. So make sure you explain this to your doctor when you present the results. Tell the Dr.: These are fecal IgA ELISA, that use the same Ab substrates as the standard blood tests.

As for Crohn's, it's usually tested through colonoscopy. You can also do the test for lactoferrin, offered by Enterolab. The test is for a thing called "lactoferrin." It is produced by cells when there is an inflammatory response. I don't know as much about this test. Lactoferrin is a part of immune function, and is present in many gut cells. It has antimicrobial properties. I know lactoferrin has been used to treat colitis; and *anti-lactoferrin* antibodies have been seen in patients with colitis. I think the lactoferrin test used by Enterolab is unique. If I were to use it, I would ask them: "How do you know this lactoferrin comes from neutrophils? How do you eliminate cross-reactivity with consumed milk products?" This test does *not* distinguish among the kinds of colitis, and there are a couple, of which Crohn's is one. This test isn't good for diagnosis, but it can fill in more of the puzzle, I think. It's only $49, so it may be worth trying.

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So what are the symptoms of Crohn's? I though you had to bleed...Possibly have puss in the stool. In general very different symptoms than GI gives.

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if you do a google search for Crohn's you'll get a far more complete answer than anyone here will give you. But yes, there are some key differences. I believe as well as colonscopy, as a previous poster mentioned, they often do a barium follow through xray to look for bowel diseases. I've had both done and they aren't so bad. You should certainly ask your doctor if he/she thinks they're a good idea in your son's case.

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Just as you didn't get sick all at once, rather you felt good, then bad, then good again until you felt bad more than good, you will cycle in much the same way until you feel good more than bad, then good all the time.

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