Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

More About Dr. Kenneth Fine
0

245 posts in this topic

3. Don't you think it's interesting that we've attracted the attention of an EVOLUTIONARY BIOLOGIST (lbd) who clearly knows their stuff and noones saying 'Ooo ooo, here's someone who can help us now!'?

Ok I lied. 4th question: Since when was 'peer-reviewed' ANYTHING worth crap? Isn't that what got all those people killed on Vioxx?

No, not really. An evolutionary biologist can't really help us at all with this. The only person who CAN help us with this is Dr. Fine, who refuses to publish. So in this instance, like most other instances, 'peer reviewed' would be worth a hell of a lot, especially to us. Peer review is essential to the advancement of medine. It is an essential communication tool. The medical community needs peer review to evolve. I have a rare kidney disorder, and the doctor who diagnosed me with it is one of the few experts in the country on this disorder. He has learned about different treatment methods for me by reviewing the research of other experts. He also formulated his own methods, which he always publishes. I'm sure the doctors who read his reports think it's worth something, as I sure do.

Vioxx killed people because the FDA is a disgusting, corrupt organization. It had much more to do with money than research. Drug companies are very intertwined with the FDA, and very powerful. Doctors prescribed Vioxx because the research said it was safe. It never would have happened if the FDA actually did its job.

-Brian

0

Share this post


Link to post
Share on other sites


Ads by Google:

I was researching causes of vertigo, which hit me very suddenly and I found this forum, where I was launched into a lot of gluten/celiac research. My mom was diagnosed with celiac disease over 40 years ago, but I didn't have her symptoms so I never gave much thought to the idea that I might have it too. I had a vague sense that gluten didn't sit well with me, but again, since I wasn't violently sick from eating gluten I figured I couldn't possibly have celiac disease. I'd had digestive upsets my whole life, from infancy on, and I attributed my main problem to dairy, which I avoided as much as I could. After living through a lot of things from birth to age 55....continual digestive upsets, heartburn, chronic cough, asthma, migraines.....one day I had an attack of vertigo that was truly frightening. I started trying to figure out what might be going on. As I researched, pieces of the puzzle came together and it sure did sound like celiac disease was a possibility. Not a certainty, but a possibility.

I found out about Enterolab and got testing done as a curiosity more than anything....full tests and gene tests. I knew going into it that the results didn't diagnose celiac disease, BUT....I thought it would be useful to check on my genes (to find out predisposition) and also to find out if I had any sort of observable reactions going on. I had the celiac gene, also reactions in all areas EXCEPT a very low, normal malabsorption score, which I saw as a good thing. My previous mainstream blood tests for celiac disease were negative. I also didn't know any doctors who knew anything at all about celiac disease, so no help there. My reading on the subject convinced me that my fairly light level of gluten consumption would not ever produce a positive blood test, and I did NOT want to stuff myself with gluten just to get a reading. So perhaps I had celiac disease, perhaps not. What I DO know for sure is that gluten affects me negatively. When I abstain from gluten, all ....ALL symptoms magically go away. I don't question the gluten connection, and even if it poses no medical danger I prefer to not suffer the negative effects of eating it.

Dr. Fine: After I got the testing done, I expected to be questioned down the road about results of a gluten-free diet. After all, if he were researching this wouldn't he want more data from all his subjects? His lack of explanation for results also bothered me....I did get answers to my questions about the test results, but I had to initiate everything and draw it out of him bit by bit. So that also bothered me. I wondered why he wasn't more concerned that those who came to him for testing fully understood the results.

However, I still see Dr. Fine as someone who is probably way ahead of his time in celiac research. He will probably end up being one piece of the celiac puzzle. Given the nature of the medical profession, the influence of the pharmaceutical co's, the fact that no money can be made from a condition that is cured by diet alone, the obvious ignorance of celiac disease in the medical community AND the lack of interest in it generally, the resistance to new ideas, I can certainly see why Dr. Fine might not be motivated to officially publish anything. He's very involved in his music, his Enterolab has a limited but successful purpose. All is well with him and he's not pushed to do more. He does just fine as it is and perhaps he is happy with that. He provides a service that is beneficial to many.

I don't regret my $$ spent at Enterolab, and the test results I got there have most definitely been a positive thing for me. I kind of wish I had a solid, medically approved diagnosis one way or the other, but that's not going to happen and I can live with knowing what I know from Enterolab AND my results from being gluten free.

Ultimately, from everything I've read Dr. Fine's ideas really do resonate with me, it just makes sense. You eat food, it goes through the digestive process, waste is eliminated. That gluten reactivity could be observed in the stool is completely logical. What I did find a stretch to believe was the idea that it could be observed as long as a year after your last gluten meal. However, there may be an explanation to this that I've missed. I can't ignore the facts: If I eat gluten very much I get a whole cascade of symptoms that disappear when I eliminate gluten. Enough said.

0

Share this post


Link to post
Share on other sites

Hmm, I don't know if I would call myself an evolutionary biologist. I teach biology and anatomy/physiology and my concentration of graduate courses beyond my first master's degree is definitely in evolutionary biology, microbiology, and environmental biology. Evolution is probably my first love, though, so if that makes me an evolutionary biologist, so be it :P

Do I have answers? No. But I do think I have a very good understanding of genetics and the role evolution plays in genetics and I also have a good background in anatomy and physiology. The gut is an amazing thing - it literally has its own "brain." It doesn't surprise me at all that what is happening in the gut is reflected in the rest of the body. It makes much more sense to me to search for antibodies to gliadin in the gut, then in the blood.

I really don't care if Dr. Fine has published or not. There is a lot of peer-reviewed research out there that is crap. Look at the cholesterol myth that has been perpetuated on the public because of one study done years ago, that has since been discredited. Yet doctors are still prescribing statin drugs based on that one study and still prescribing low fat diets.

I think the service that Dr. Fine provides is for those of us who would not test positive with the "gold standard" tests, yet definitely have reactions to gluten. His tests gave me the last thing I needed to get rid of migraines for good (to get rid of casein as well as gluten). If I had gone to a conventional doctor, I would have gotten the same ignorant responses that so many of you have gotten - you don't have celiac genes, you have negative results, you are not gluten-sensitive. And I would be sitting here today with probably another migraine, swollen ankles, 10 lbs heavier, with achy hands and feet and thinking I was just getting old.

If his tests didn't help you, that's fine. Explore other resources. Perhaps you have a much more complicated problem that an intolerance to a toxin like gluten that a gluten-free diet will not resolve. Why pick on Dr. Fine just because he didn't solve your problem? If you (not directed at any one person -just a collective you) don't believe in his tests, then move on and look elsewhere. If he publishes in a peer-reviewed journal, is that going to change your mind about his tests? If the tests didn't work for you in the past, why would they work for you after publishing? I don't see how the work that this man is doing could be more harmful than the ignorance within the medical community perpetuating its "peer-reviewed gold-standard" tests that miss most of the gluten-sensitive or intolerant people out there.

Laurie

0

Share this post


Link to post
Share on other sites
Hmm, I don't know if I would call myself an evolutionary biologist. I teach biology and anatomy/physiology and my concentration of graduate courses beyond my first master's degree is definitely in evolutionary biology, microbiology, and environmental biology. Evolution is probably my first love, though, so if that makes me an evolutionary biologist, so be it :P

Do I have answers? No. But I do think I have a very good understanding of genetics and the role evolution plays in genetics and I also have a good background in anatomy and physiology. The gut is an amazing thing - it literally has its own "brain." It doesn't surprise me at all that what is happening in the gut is reflected in the rest of the body. It makes much more sense to me to search for antibodies to gliadin in the gut, then in the blood.

I really don't care if Dr. Fine has published or not. There is a lot of peer-reviewed research out there that is crap. Look at the cholesterol myth that has been perpetuated on the public because of one study done years ago, that has since been discredited. Yet doctors are still prescribing statin drugs based on that one study and still prescribing low fat diets.

I think the service that Dr. Fine provides is for those of us who would not test positive with the "gold standard" tests, yet definitely have reactions to gluten. His tests gave me the last thing I needed to get rid of migraines for good (to get rid of casein as well as gluten). If I had gone to a conventional doctor, I would have gotten the same ignorant responses that so many of you have gotten - you don't have celiac genes, you have negative results, you are not gluten-sensitive. And I would be sitting here today with probably another migraine, swollen ankles, 10 lbs heavier, with achy hands and feet and thinking I was just getting old.

If his tests didn't help you, that's fine. Explore other resources. Perhaps you have a much more complicated problem that an intolerance to a toxin like gluten that a gluten-free diet will not resolve. Why pick on Dr. Fine just because he didn't solve your problem? If you (not directed at any one person -just a collective you) don't believe in his tests, then move on and look elsewhere. If he publishes in a peer-reviewed journal, is that going to change your mind about his tests? If the tests didn't work for you in the past, why would they work for you after publishing? I don't see how the work that this man is doing could be more harmful than the ignorance within the medical community perpetuating its "peer-reviewed gold-standard" tests that miss most of the gluten-sensitive or intolerant people out there.

Laurie

I told myself I wasn't going to respond on this thread since I'm so busy with the other one. But I just can't help but make a comment here.

I'm so sorry if anyone is still misunderstanding our motives with the Dr. Fine letter and this whole discussion in general. Of course we know that much 'science' that gets published eventually proves itself to be wrong, sometimes even laughable. Scientists, doctors and researchers are human beings and make mistakes all the time. Some of them could even be tempted to skew things a little bit in their direction just for the money. Imagine that! :rolleyes: (And I would challenge anyone who has never really, really messed up to cast the first stone.) But unfortunately their particular mistakes can mean life or death sometimes, like a few other professions and must be taken very seriously as a result. They must be held to a much higher standard.

If I dare put myself up as a momentary judge of someone as brilliant as Dr. Fine, his mistake in his research journey, it seems to me, is promising us he would publish in a peer reviewed professional journal in the first place. He just needs to tell us the truth. If he would just tell us, like many of you scientists are doing, that publishing is pointless in his case or too difficult or something else, we would have a reason and not keep wondering about it and waiting for it. Broken promises, no matter how you dress them up are lies, I'm afraid. We want to respect Dr. Fine in the worst way, but he has possibly 'lied' to many of us repeatedly for many years. And it isn't necessary. That issue just needs to be cleared up, if possible, so we can all indeed understand, forgive and move on.

And by the way, the primary reason why publishing matters is because it's the ONLY thing most doctors will look at. I live in such a small community that I don't even have a physician who knows anything about celiac other than banana babies from the 40's and 50's. Right or wrong, without publishing, they will NEVER 'believe' that I might be celiac or gluten intolerant from Dr. Fine's test results if they aren't 'peer reviewed published'. Many of us can't get past a negative blood test with our doctors. They just won't go any further. It's a real problem. Many of us could really use a solid medical care professional to guide our progress at least. It would be so nice.

Personally, I think Dr. Fine's research is probably spot on. I'm not really questioning it's validity. But because there are significant unanswered puzzling questions swirling around it all the time on this board and in my own mind, I wanted to give Dr. Fine a chance to clear them up and educate us if he would. No harm, no foul. Just because I didn't get better yet, doesn't mean that I don't still believe in Dr. Fine's technology. Maybe it's something I'm doing wrong. Before I move on to something else, I want to make very sure Dr. Fine's research can't help me. That's my personal take on this. Precisely because he HAS helped so many, many people on this board, I would really like to know what might have made it not work for me yet.

I hope that helps. I have repeatedly stated that I have no negative bias towards Dr. Fine at all. I sincerely want him to be right for everyone's sake. His staff has always been extremely kind and gracious to me. I am saddened if anyone thinks this is a witch hunt. We are just highly interested consumers asking reasonable questions of someone we want to greatly respect. We are not picking on him. On the contrary, we have actually picked him. There's great honor in that and a huge difference.

Have a great day, everyone! :)

0

Share this post


Link to post
Share on other sites
No, not really. An evolutionary biologist can't really help us at all with this. The only person who CAN help us with this is Dr. Fine, who refuses to publish. So in this instance, like most other instances, 'peer reviewed' would be worth a hell of a lot, especially to us. Peer review is essential to the advancement of medine. It is an essential communication tool. The medical community needs peer review to evolve. I have a rare kidney disorder, and the doctor who diagnosed me with it is one of the few experts in the country on this disorder. He has learned about different treatment methods for me by reviewing the research of other experts. He also formulated his own methods, which he always publishes. I'm sure the doctors who read his reports think it's worth something, as I sure do.

Vioxx killed people because the FDA is a disgusting, corrupt organization. It had much more to do with money than research. Drug companies are very intertwined with the FDA, and very powerful. Doctors prescribed Vioxx because the research said it was safe. It never would have happened if the FDA actually did its job.

-Brian

I actually didn't mean help us with the Dr Fine thing, I meant help us in general. I think it is always helpful to understand the origins of things. Celiac included.

You're right, the FDA is a corrupt organiztion. And those same drug companies are the ones funding medical schools and what's taught in them. Perhaps we could start a new thread about all the reasons we don't trust doctors. There probably is one already though, huh?

Oh, thank you Rachel. At least some people do come up negative on that test, that's reassuring. (To me.)

0

Share this post


Link to post
Share on other sites




Hmm, I don't know if I would call myself an evolutionary biologist. I teach biology and anatomy/physiology and my concentration of graduate courses beyond my first master's degree is definitely in evolutionary biology, microbiology, and environmental biology. Evolution is probably my first love, though, so if that makes me an evolutionary biologist, so be it :P

Do I have answers? No. But I do think I have a very good understanding of genetics and the role evolution plays in genetics and I also have a good background in anatomy and physiology. The gut is an amazing thing - it literally has its own "brain." It doesn't surprise me at all that what is happening in the gut is reflected in the rest of the body. It makes much more sense to me to search for antibodies to gliadin in the gut, then in the blood.

Laurie

See! See! There is a quote from the Wizard of Oz for evey situation in life. "Here's someone who can help us now!"

I'll grant that I should start new topic if I'm gonna start asking you questions though, I'll be quiet now.

0

Share this post


Link to post
Share on other sites
Perhaps we could start a new thread about all the reasons we don't trust doctors.

Actually, isn't this thread already about the reasons we don't trust DOCTOR Fine? (Or do you trust Dr. Fine only but not any other doctors?)

Incidentally, does anyone else hear The Three Stooges routine - "calling Doctor Howard, Doctor Fine, Doctor Howard" - running through their head everytime they read a thread about Dr. Fine?

I wouldn't personally even consider bashing all doctors, the medical industry, and pharmaceutical companies without taking one moment at least to recognize the millions - literally millions - of lives that they collectively have saved. I thank God for doctors and for modern medicines. They have done much to alleviate suffering in this world - even Dr. Fine has played a part.

0

Share this post


Link to post
Share on other sites
Actually, isn't this thread already about the reasons we don't trust DOCTOR Fine? (Or do you trust Dr. Fine only but not any other doctors?)

Incidentally, does anyone else hear The Three Stooges routine - "calling Doctor Howard, Doctor Fine, Doctor Howard" - running through their head everytime they read a thread about Dr. Fine?

I wouldn't personally even consider bashing all doctors, the medical industry, and pharmaceutical companies without taking one moment at least to recognize the millions - literally millions - of lives that they collectively have saved. I thank God for doctors and for modern medicines. They have done much to alleviate suffering in this world - even Dr. Fine has played a part.

I don't trust any doctors. That includes Dr Fine. I vet everything any doctor says to me. I'm not bashing them. I'm just not trusting them. I will happily bash the pharmaceutical companies, but thats a topic for another day.

I, along with Gentleheart, would simply like to know:

1. What Dr Fine has learned and when he's going to share that.

2. Why everyone has to fight so much?

0

Share this post


Link to post
Share on other sites

Have any of you seen the movie "Lorenzo's Oil?' In the movie, the parents of a child with ALD seek all possible routes to help their son through conventional medical means. Frustrated with the snail-like pace of peer-reviewable medical studies, the parents strike out on their own, bypassing normal scientific study procedures, and end up discovering a method of treatment that has given hope to many ALD boys since. The treatment is not successful for every boy, but for many it is. The Odone's own son, Lorenzo, lived to be 30, but he was much farther along in the disease when they discovered the treatment. The medical and scientific community villified the Odone's for bucking protocol.

My point is that, yes, medicine has saved many many lives, but it is also bogged down sometimes by the protocol that has been formed to protect the ethics and validity of the study. I think, in some ways, this parallels Dr. Fine's work. He plunged ahead, found what seems to be a reliable way to indicate gluten sensitivity, but like the Odone's work, perhaps it is now past the point where he can go back and run a peer-reviewable study. (It took 10 years of studies for conventional medicine to recognize the Odone's work on ALD). Perhaps he feels he can provide a better service by continuing with his work.

Modern conventional medicine is also bogged down by what is profitable and what is not. Why have certain drugs been passed through channels so quickly to be approved? Because they will make a huge profit for the drug industry - just look at statins! Do you know that the statin drug manufacturers pushed to lower the so-called acceptable levels of LDL cholesterol, so that they could push doctors to prescribe even more drugs? So who am I going to trust? A doctor who makes a pretty modest living doing a pretty simple test to indicate gluten sensitivity or a industry who will only recognize this problem when there is a drug to treat it? You can bet that when a drug is found to allow people to consume gluten, everyone will be diagnosed with gluten sensitivity. I bet they will all be citing Dr. Fine's assertions that only DQ4 is not gluten sensitive then.

I have no opinion one way or another about the letter and applaud the way it was written. Go for it! :) I'm not interested in signing because the lack of publishing really doesn't affect my opinion one way or another. I am a scientist by training and nature, but I also know that sometimes science can be annoyingly plodding and if every scientist had followed protocol, we may not have many of the things we enjoy today. It's a fine line I guess.

Laurie

0

Share this post


Link to post
Share on other sites
"the lack of publishing really doesn't affect my opinion one way or another. I am a scientist by training and nature, but I also know that sometimes science can be annoyingly plodding and if every scientist had followed protocol, we may not have many of the things we enjoy today. It's a fine line I guess.

Indeed.

As a scientist, Laurie, you are no doubt familiar with the scientific method.

"a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning. A scientific method consists of the collection of data through observation and experimentation, and the formulation and
testing of hypotheses
."

All we are asking for here is that Dr. Fine's hypotheses be tested. You get them tested by other doctors by publishing them in peer-reviewed journals. Science can be frustratingly slow but it seems to me that on this forum we have quite a few who seem willing to simply cast aside the entire concept of the scientific method. I, for one, prefer not to return to the middle ages. For those desperate among us for an answer they need only implement the gluten-free diet. Why do they need to go to Enterolab when we can't even prove that this method works?

0

Share this post


Link to post
Share on other sites
Indeed.

You get them tested by other doctors by publishing them in peer-reviewed journals.

Actually, that's not how you get them tested. That's just how other doctors read about them.

SBJ, perhaps you'd like to sign the letter Gentleheart is writing to Dr. Fine? It asks him several questions in a professional, non-confrontational way, and many of us have signed it.

In the meantime, can we wait on arguing the points on this thread until we have sent him our letter and actually heard back from him? Many of those points are mentioned in the letter.

0

Share this post


Link to post
Share on other sites

The scientific method as taught in most middle schools these days reflects only the typical observation-hypothesis-experimentation-data-analysis- conclusion steps. In actuality, there is not a prescribed "scientific method" with 5, 6 or 7 steps. Science includes the scientific method but that is not all science is and it certainly isn't the only way to do science. In actuality, what the term "scientific method" implies is that scientists need to follow ethical valid methods of doing science, and there are many ways to accomplish this other than experimentation. Many studies are epidemiological or observational in nature, which is almost certainly what Dr. Fine's studies would have to be at this point, unless he wanted to stop what he is doing and get a grant for a full-blown study. Not likely forthcoming unless he has a lucrative drug treatment in mind that would attract drug company money or has connections in government for very slim government funding.

I am going back to lurking again. No point in pursuing this thread further for me.

Laurie

0

Share this post


Link to post
Share on other sites
Actually, that's not how you get them tested. That's just how other doctors read about them. SBJ, perhaps you'd like to sign the letter Gentleheart is writing to Dr. Fine? It asks him several questions in a professional, non-confrontational way, and many of us have signed it. In the meantime, can we wait on arguing the points on this thread until we have sent him our letter and actually heard back from him? Many of those points are mentioned in the letter.

Two points:

  1. I believe I can respond to any post that I'd like to whenever I want to. I am sorry if this seemingly upsets you - that is not my intent. I don't believe my posts here are rude in the least.
  2. I've already communicated with Gentleheart who, as her name implies, was very gracious indeed! We had a polite back and forth free of any admonitions.

Oh heck, three points. You are not correct. You communicate your methods to other doctors/scientists so that they can duplicate the same procedure. You can do this offline or you can do it by publishing your process in a peer-reviewed scientific journal. Any who then test using the same process can then either report separately or in tandem with the originator of the process.

Unless I am mistaken, Fine has already published his method and its validity has already been questioned by the 'scientific community'. Fine has yet to respond in any meaningful way to that criticism.

Objective: To evaluate two commercial stool tests for detection of secretory IgA antibodies against gliadin and human tissue transglutaminase for diagnosis of celiac disease in children with symptoms.

Conclusions: Neither stool test was suitable for screening for celiac disease in children with symptoms.

You can read Dr. Fine's rather feeble response. Note that the analysis of his method was published in a scientific journal. Note that his response was a 'letter to the editor'.

http://www.celiac.com/articles/995/1/Effec...Fine/Page1.html

No flame wars - I excuse myself from further comments on this thread. You've now made it toxic!

0

Share this post


Link to post
Share on other sites
Unless I am mistaken, Fine has already published his method and its validity has already been questioned by the 'scientific community'. Fine has yet to respond in any meaningful way to that criticism.

Objective: To evaluate two commercial stool tests for detection of secretory IgA antibodies against gliadin and human tissue transglutaminase for diagnosis of celiac disease in children with symptoms.

Conclusions: Neither stool test was suitable for screening for celiac disease in children with symptoms.

You can read Dr. Fine's rather feeble response. Note that the analysis of his method was published in a scientific journal. Note that his response was a 'letter to the editor'.

http://www.celiac.com/articles/995/1/Effec...Fine/Page1.html

The study was not published by Dr. Fine and his response was anything but feeble. He was questioning the methodology of the study and the fact that it involved only 20 celiac children. He stated several very valid responses to inaccuracies in data collection and methods. How is that feeble? I thought he made several good points.

I guess we will all have to agree to disagree. Maybe we should split this thread into those that like Dr. Fine's work and those that don't. And promise not to cross lines :P

Laurie

0

Share this post


Link to post
Share on other sites

Colleen,

Love yer quote by Elanor! Where do I find stuff by this person, Fine?? Sounds like an interesting dude.

Thanks,

Grrranny

The former leader of our support group, a Naturopath, knows Dr. Fine personally. Dr. Fine has eaten dinner at his house. I asked him if he had ever spoken to Dr. Fine about why he has not published his results for peer review, he said yes. Well why not, was my next question? The answer to the question was....wait for it......"He just doesn't."

That does not inspire a great deal of confidence for me. Not that my opinion means anything, since I have never used Enterolab. But if people are making lifestyle and diet changes based on these test results, they are owed the courtesy of having had the methods and findings validated. That's good customer service.

0

Share this post


Link to post
Share on other sites

Colleen,

Love yer quote by Elanor! Where do I find stuff by this person, Fine?? Sounds like an interesting dude.

The quickest way to draw negative attention to one's scientific or medical work, no matter how valid or helpful, is to publish before you are entirely ready. Sometimes the most effective way to get the word out there is to just tell people. If everyone waited until they were published, we would not even know about greens being good for people. THAT did NOT come out of medical research, it came out of human beings using different things and telling each other about the results. The research only came afterward. In case there was any confusion, human experience IS just as valid as any scientific research. I am speaking as one person who science has not managed to invalidate with their fear-mongering. In other words, you don't need to have letters after your name to be capable of learning something. I wish the medical community would stop trying to invalidate patient observation as well. We are perfectly valid, and quite capable of making informed decisions in our own behalf.

Thanks,

Grrranny

0

Share this post


Link to post
Share on other sites

Having just ordered an enterolab test, this thread is pretty interesting. Like some people, I stumbled on not eating gluten, one week, just stopped having diarrhea, which I had had on a daily basis for about 9 years, by process of elimination. It's been months and I'm still weaning off the opiates I was taking just to make it to work, and I was still sick on them. This is the first time in my adult life I have not had daily episodes of uncontrollable diarrhea. With codeine and lomotil and immodium there were controllable to an extent, but never quite good enough, today is the second day I've gone to work without taking any medicine.

That being said, first, disregarding the inaccuracy of the test... if they find antibodies, does that not mean, fairly definitively, that you have a reaction? Whether it be auto-immune or just immune means the severity and other effects will be different, but in the end, you just can't eat it or it will make you sick. Degrees of sickness will vary, and degrees of exposure, but all in all, the result is fairly similar.

Secondly, it's interesting to read some of the stories. I was dx'ed with IBS for a long period of time, like I said 9+ years, and just took opiates to slow motility, I never felt well, especially after the tolerance kicked in, it would still slow motility, but it feels less and less like the solution and more like a burden. I'm really interested in people's histories, celiac or no, especially those who have taken medicine like I have for so long. Ideally, I'd like to get re-scoped and have them specifically look very carefully for celiac disease, but the doc says that's 2 months of eating a lot of wheat, which I know from the last small amount of flour I had will mean going far back onto the opiates.

Lastly, and perhaps the most important point, when I first got sick, mercury fillings and candida were all the rage. A poster on another forum talked about getting all his fillings removing, having teeth pulled and partials put in. This was, excuse my language, f'ing insane to me. I don't want to get over my head in a debate about chemistry and the chemical reactions that happen with mercury in fillings, but the insanity to me was that I was sick as a dog and never had a filling at that point. Nearly identical symptoms and no fillings, but these people were convinced if they went to a specialty dentist and had their fillings pulled they would be cured. Maybe those dentists were frauds as well, maybe they weren't, I don't know those people's outcome.

As to the candida, someone suggested great smokies laboratories, who do stool tests similar to enterolab. So, I had that done, this was just a year or so after I initially got sick. So we are talking... 2000? Anyway, I took their test, came back fairly normal with some elevated yeast, so I went to several GIs, and they looked at me like I was the biggest sap in the world. A couple wouldn't even look at it. One glanced at it, handed it back and said it didn't mean anything. (side note : my theory is candida is probably a side effect of undigested food making it to the colon.) Anyway, I take pro-biotics still, they never cured me, but they do help somewhat, in my anecdotal experience.

But the real kicker is when I went to the GI last year, and I had done every damn exclusionary test for IBS that they can think of, got a scope but doc specifically mentioned he wasn't looking for celiac and only went X (some organ) far with it, so I'm not sure about the reliability of that, I believe he said a possibility because the diet was working so well, but maybe 50/50 or less. I also had a blood test about 7 years ago, but never saw results, just told it was neg, no idea what I was eating at the time, probably not much, I'd usually go 72 hours without eating, or just eating rice, in order to work a part time job, easier w/o food.

Anyway, so we went through all this, and he says, I don't really know, but have you tried great smokies laboratories?

So, to me, the moral is, the medical community has always been slow to adapt. 7 years from now, doctors might be sending tests out to enterolab... or at least suggesting it, when they are out of ideas. No one here can say that they won't.

If I read the study mommagoose put up correctly, they didn't find false positives, even if it was inaccurate. It might be nice for some, like me, to at least have a clue of what they might have and how to live with it. Even if enterolab just detects anti-bodies, it would be a comfort for me to know that I produce anti-bodies to gluten. For all I know, I have removed some other agent of distress from my diet, right now it seems like there could be a LOT of different things that make me sick. It would/will be nice IF I can tie them back to a source, and actually have that work.

I saw Rachel was posting a lot, I read a lot of her threads, and can sympathize, I saw her hopping from thing to thing, looking for any solution. I know how that is, you start to feel crazy, after doing that for all this time, and losing so much in the process and being in so much pain... sometimes you just want to know anything. If the test is flawed and gives false positives, then it's not really worth much. But I am willing to pay $99 when all else has failed. Someone said it several pages ago, the man has a product, people are willing to pay for it. Do I care if he has published his research? Not especially. If they find anti-bodies in me, then that is good enough for me. It is an answer I can live with.

A charlatan would take your money and offer nothing in return. I think enterolab's prices are reasonable, and I don't feel they have exaggerated their claims, at least not in my understanding of them. I don't need to eat wheat for several months and be in abject misery to be happy on a gluten free diet, I just want to see if there is at least some evidence pointing in that direction. And it's a dietary change, which seems fairly well supported by Michael Pollan's books (and other's research)... if it was yanking out all my teeth to get rid of the mercury, I might want something a little more conclusive.

Anyway, that's my two cents on the subject, feel free to correct me if I am misunderstanding mommagoose's link, or expectations of enterolab.

1

Share this post


Link to post
Share on other sites
Ultimately, from everything I've read Dr. Fine's ideas really do resonate with me, it just makes sense. You eat food, it goes through the digestive process, waste is eliminated. That gluten reactivity could be observed in the stool is completely logical. What I did find a stretch to believe was the idea that it could be observed as long as a year after your last gluten meal. However, there may be an explanation to this that I've missed. I can't ignore the facts: If I eat gluten very much I get a whole cascade of symptoms that disappear when I eliminate gluten. Enough said.

Same here. I'm not sure about the long-term detection either, however, the only thing I can think of, is this is sort of how vaccine's work, if I'm not mistaken. Your immune system is exposed to a dead or weakened version of the invader, it then creates anti-bodies to fight it. That way, when you are exposed to the real thing, even years later, your body is poised to destroy it before it can do damage.

Again, not a scientist, just my guess about the logic behind this. If the test is sensitive enough, it could potentially find very miniscule amounts of anti-bodies. I don't know what methods they use, but the ELISA test for instance is incredibly sensitive, perhaps overly so for some things. But done right, it can detect tiny amounts of anti-bodies.

0

Share this post


Link to post
Share on other sites

The former leader of our support group, a Naturopath, knows Dr. Fine personally. Dr. Fine has eaten dinner at his house. I asked him if he had ever spoken to Dr. Fine about why he has not published his results for peer review, he said yes. Well why not, was my next question? The answer to the question was....wait for it......"He just doesn't."

That does not inspire a great deal of confidence for me. Not that my opinion means anything, since I have never used Enterolab. But if people are making lifestyle and diet changes based on these test results, they are owed the courtesy of having had the methods and findings validated. That's good customer service.

I would imagine that the dietary changes are the validation in and of themselves, especially if there is improvement in health

I had a baby with multiple intolerances, not diagnosed by Dr Fine. My husband and I could not imagine how our baby had all these health issues that were found to be through food intolerances.

Years after my child was born I was sick all the time...I suspected Gluten and contacted Enterolab, Not only was I Gluten Intolerant, but Dr Fine found me high in antibodies for all of the culprits my baby was intolerant of as well. I guess what he got in infancy I had all along, either dormant or triggered in adulthood. But I want to also say... I had learning disabilities and rashes all through my childhood....and I believe it was the Gluten (and maybe then some).

So when I look back (and maybe some others here would agree as well) ..even though I did not have full blown Celiac symptoms growing up...there was stuff smoldering under the surface...that I can only attribute to an underlying cause now.

0

Share this post


Link to post
Share on other sites

I would imagine that the dietary changes are the validation in and of themselves, especially if there is improvement in health

I had a baby with multiple intolerances, not diagnosed by Dr Fine. My husband and I could not imagine how our baby had all these health issues that were found to be through food intolerances.

Years after my child was born I was sick all the time...I suspected Gluten and contacted Enterolab, Not only was I Gluten Intolerant, but Dr Fine found me high in antibodies for all of the culprits my baby ws intolerant of as well. I guess what he got in infancy I had all along, either dormnt or triggered in adulthood. But I want to also say... I had learning disabilities and rashes all through my childhood....and I believe it was the Gluten (and maybe then some).

So when I look back (and maybe some others here would agree s well) ..even though I did not have full blown Celiac symptoms...there was stuff smoldering under the surface...that I can only attribute to an underlying cause now.

Just to let you know, the person you are responding to was on here over 3 years ago. You likely will not find most or any of these poster still active here.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0