More About Dr. Kenneth Fine

[Fiddle-Faddle]

You know, if Dr. Fine's original studies happened to be on people who were all either celiac or gluten intolerant, or healthy people as controls, then they might have been 100% on target. But perhaps people with bacterial gut infection and/or people with mercury toxicity might be the exceptions--and if he's just discovered this, then he will have to start all over.

The question is, how many people do have mercury toxicity and/or bacterial gut infections and/or Lyme disease?

The answer, I'm sure, is similar to the celiac story--MANY, MANY, more than the doctors ever dreamed of.

And again, I think it comes back to the pharm industry's stranglehold on the medical system; they're not going to fund studies for any of these conditions unless they stand to make enough money to hold the next generation financially hostage, the way they do with meds for IBS, migraines, neuropathy, and various neurological conditions.

[Fiddle-Faddle]

"The subject of Enterolab never came up again and I had to assume from the look on his face that he did not believe in the test. That has always seemed odd to me since this is not a conventional doctor and not a doctor who would dismiss the stool test if he felt that it were valid....or if he had faith in Dr. Fine."

This a really a stretch. That is quite a leap to judgement. It's like if you ask about someone and you get a look and a shrug. It means nothing. I am all for hearing about people being tested and still having problems. I will gladly read any research proving or disproving his theory. But to say the look on someone's face amounts to a hill of beans? That cannot be related to Dr. Fine's testing/publishing.

Rachel, I gotta say, I agree with TrillumHunter: you are presenting your assumption as though it's some kind of evidence. Most of us here have seen that kind of look on doctors' faces when describing our own symptoms, or when asking about mercury in vaccines, etc.

Come on, you can't have it both ways!

I think the point that the Enterolab-defenders are trying to make here is that the Enterolab-accusers are throwing out the baby with the bath water. Obviously, there is some kind of false positive going on with the stool testing--but to those who have been HELPED by this testing, it makes no sense to throw it out entirely until something better can replace it. And the blood work, while on paper a logical choice, has NOT been accurate for many here, while Enterolab apparently HAS.

Perhaps it would be simplest for Dr. Fine to amend his suggestions for those with positive results to include testing for other conditions if a gluten-free diet does not resolve symptoms.

But what do we make then of Joe's results? Is he totally healthy? Or is he harboring some kind of gut bacteria or mercury toxicity that is on the verge of making him ill? Or is it possible that many people are able to coexist with these conditions and remain apparently in the best of health anyway?

And what about the conclusion so many have come to, that gluten in its present form is unhealthy for most people?

[darlindeb25]

TrillumHunter and Fiddle-Faddle---So very true.

At an improptu discussion at the end of the evening, Dr. Fine revealed that he had his own food that he brought with him, and he ate in his room. Now to me that is very strange! Did he not trust the cooks that the dinner was gluten free? I don't know. Is he himself gluten sensitive? I don't really know. But based on his remarks, I am totally convinced that he has an obsession about gluten and he feels that no one should eat it.

This is more assuming. I do not believe Dr. Fine has an obsession with gluten, he knows his stuff, plain and simple. A wonderful book that most of us have read, The Gluten Free Bible, by Jax Peters Lowell, even lists Dr. Fine as one of the Who's Who, the list of Celiac Savvy doctors and Medical Centers.

Some believe wholeheartedly in Dr. Fine, some are in the middle, and some bad mouth everything he does. That's life, it happens to everyone.

[Fiddle-Faddle]

I can only speak of my own situation....but I dont believe that I had damage from years of gluten toxicity. I had absolutely no symptoms.....no GI symptoms and no neurological symptoms. I did not appear to have any issues with malabsorption.

Rachel, I used to follow the OMG thread, and every step of the way on your journey, you were sure that you had found The Answer--and that You Were Right.

I remember when you were positive that Auxigro was causing your symptoms.

You also mentioned (several times) that while you would not be diagnosed as autistic, that you have several autistic traits.

How, then, can you be so sure that you have no neuro symptoms?

For those of us who are reading what you post, it does seem that you do exhibit neuro symptoms.

Given the strong link between autism and gluten, isn't it possible that you ARE reacting to the gluten you are eating?

I say this not out of mean-spirited name-calling, but because I have followed your posts for so long, and I do care. I have always admired the way you've poured your soul into your research about your problems, and your tenacity--but that very tenacity might be shooting yourself in the foot at this point.

You keep insisting that you don't have celiac genes so you can't have celiac. Maybe you do, maybe you don't. But you do lose credibility on this board if you are consuming gluten at all after what you've been through, especially if even your doctors want you off it (in your own words).

For all you know, maybe Dr. Fine is not publishing because he's discovered that his test is invalid in the presence of Lyme--but that doesn't detract from the value of his test for those who don't have your issues.

Look at Ravenwoodglass's sig--and she would not have been diagnosed without Enterolab. Even if she were the only one (and obviously, she's not by a long shot), her case alone makes Enterolab worthwhile, whether you agree or not.

[Fiddle-Faddle]

At an improptu discussion at the end of the evening, Dr. Fine revealed that he had his own food that he brought with him, and he ate in his room. Now to me that is very strange! Did he not trust the cooks that the dinner was gluten free?

If we're getting into assumptions (always dangerous!), I would assume that either he has other food sensitivities or even allergies, or if he is Jewish (don't know if he is or isn't), that he keeps Kosher, or that he avoids having his food handled by others during flu season (I usually avoid eating out during flu season myself, and have ever since I saw a waiter sneeze into his hand, and then set the table with"clean" silverware).

There are plenty of logical explanations without assuming that he is a man obsessed. Any of them could be true, including your obsession theory, but what point is there in posting possible character assassinations?

[ravenwoodglass]

Look at Ravenwoodglass's sig--and she would not have been diagnosed without Enterolab. Even if she were the only one (and obviously, she's not by a long shot), her case alone makes Enterolab worthwhile, whether you agree or not.

I was NOT diagnosed by Enterolab. I did the Enterolab tests 5 years after I was diagnosed celiac by an allergist (MD) and had that diagnosis confirmed by my GI when the gluten challenge almost killed me with a GI bleed.

I had the Enterolab tests done after my DD, who was diagnosed by postive blood work and biopsy went to college and after 2 years gluten-free she had retesting done and the doctors told her that she could not be celiac because she does not carry DQ2 or DQ8. Since we knew I had a firm diagnosis but did not know what my genes were there was nothing I could say. A couple years later I was recovering from a bout of pancreatitis brought on by a reaction to preps for a rountine 'you turned 50' colonoscopy I decided to do the Enterolab tests to find out what genes I carry and also to see if soy, eggs or casien might be causing the problems to continue that arose from the pancreatitis. I did test high for a reaction to soy which explained a lot as I was consuming a great deal of it and with the dropping of the soy and the addition of some pancreatic enzymes when I consumed meat or fatty foods I did finally heal and get back to where I was before the routine scope that went so bad.

There is something called silent celiac and there is also something called the honeymoon effect that was the reason why doctors were so convinced that children would outgrow celiac. It can take years after we heal for the GI symptoms to reappear but that does not mean damage is not being done. My DD is now, after 3 years back on gluten, symptomatic again but because of those idiot doctors and the failure of US medicine to acknowledge that there are more than just those two genes involved she is attributing any and all reoccurance of symptoms as stress from school and continueing with a full gluten diet. I can do nothing but pray.

Until US medicine recognizes that there are more than just the 2 genes for celiac and that other genes can also cause it, I am living proof of that, there will be people who go gluten-free for a bit, heal and then think that because they don't carry one of those 2 genes that the first diagnosis was in error and will start poisoning themselves once again. It is sad but there is nothing anyone can do to convince those folks to go back on the diet- until they become fully symptomatic again, even then some may ignore the need for the diet and spend precious years and lots of dollars looking for something else.

Something else that we really need to keep in mind is that celiac is not a blanket diagnosis that will always cover every issue that people have. It is quite possible to have celiac and also have things like Lyme and bacterial overgrowths, thyroid and so much more. If folks have more than one issue going on then the diet may not be a cure-all. I was very lucky and it turned out that my many other issues were directly related to the years that I had celiac and was undiagnosed and that is the reason why those autoimmune issues went into remission. Not everyone is going to be so fortunate and may need to address other issues in addition to the gluten sensitivity to heal fully.

[Rachel--24]

Rachel, I used to follow the OMG thread, and every step of the way on your journey, you were sure that you had found The Answer--and that You Were Right.

I remember when you were positive that Auxigro was causing your symptoms.

You also mentioned (several times) that while you would not be diagnosed as autistic, that you have several autistic traits.

How, then, can you be so sure that you have no neuro symptoms?

For those of us who are reading what you post, it does seem that you do exhibit neuro symptoms.

Given the strong link between autism and gluten, isn't it possible that you ARE reacting to the gluten you are eating?

I say this not out of mean-spirited name-calling, but because I have followed your posts for so long, and I do care. I have always admired the way you've poured your soul into your research about your problems, and your tenacity--but that very tenacity might be shooting yourself in the foot at this point.

You keep insisting that you don't have celiac genes so you can't have celiac. Maybe you do, maybe you don't. But you do lose credibility on this board if you are consuming gluten at all after what you've been through, especially if even your doctors want you off it (in your own words).

I'm really wondering if this thread can continue without my issues and my diet constantly being brought up here? We are talking about Dr. Fine and Enterolab and if we want to discuss all of my issues or whether they stem from my consumption of gluten....maybe someone would like to start a seperate topic called "Rachel's diet/issues.....are they related to gluten? Is she autistic? "

I would be happy to answer all of your questions in that thread. I dont think that the OP (Gentleheart) is really interested in all of that since her question was actually about Dr. Fine and Enterolab.

Your personal opinion of me is not whats important (to me or anyone else). Whats important to me is how I FEEL. I feel much better now....I have had a very good year....the best I've had since I got sick. Knowing what you know about me, my "tenacity" and my desire to become well....do you really think I would jeopardize that over gluten? I dont think so.

If I were having problems with it I would stop it. I'm not exactly in the same situation as an asymptomatic gluten intolerant individual. My body definately lets me know when its being harmed.

Maybe you would like my mom, my co workers and my friends to come on here and let you know what types of changes they've seen over the past year? Are they positive changes or nagative changes? ? Would that be helpful? Could we then move on?

Also, I never said that I was autistic. I said that EVERY doctor who has been treating me has said that I'm fortunate because had I been subjected to this level of toxicity early on (as in early childhood) I WOULD have almost certainly been autistic. This is even more apparant now that we have some of my genetic test results back.

But no....to clear things up for you my brain developed normally...my body developed normally and nothing happened to me until I was 31....and it had nothing to do with gluten.

I am not denying that I have an illness....I'm not saying that I'm cured. All I'm saying is that I eat gluten and it doesnt do anything to me. It doesnt change my behavior the way other foods do...it doesnt cause inflammation the way other foods do, it doesnt cause brainfog the way other foods do....it doesnt do ANYTHING to me (as far as I can tell).

The percentage of autistic kids who benefit from a gluten-free diet is somewhere between 40% and 60%.....which is huge....but it certainly doesnt cover the entire autistic population.

The point is...everyone is different. Just because you cant believe that I can eat gluten and not worsen my condition doesnt mean that its not true.

Rachel, I used to follow the OMG thread, and every step of the way on your journey, you were sure that you had found The Answer--and that You Were Right.

I remember when you were positive that Auxigro was causing your symptoms.

Fiddlle Faddle.....I have found MANY answers for myself alonmg the way. Thats why I have been able to improve my health.....despite the fact that I'm still mercury toxic.

MSG causes me symptoms....very bad symptoms....I avoid it. So yes, I would not want to eat something which contains Auxigro because I will react to it. It does cause me symptoms.

Like I said all along.....I avoid the things which make me sick. I eat the few foods that I can eat without having problems...and gluten is apparantly one of them whether you can accept it or not.

I would REALLY appreciate it if we can get back to the topic before this thread is lost to everyone. Its not about my diet....its about Enterolab.

Fiddle-Faddle,

Nothing personal and I appreciate your concern but we can discuss it in pm's or on another thread....but not here. I openly discuss EVERYTHING on the OMG thread and so if there is anyone who is still interested or concerned about my diet...please feel free to post in that topic.

I really hope this is the last post about my diet.....or any other issues that I have.

[Fiddle-Faddle]

I agree with all you have said but I do need to clarify something. I was NOT diagnosed by Enterolab. I did the Enterolab tests 5 years after I was diagnosed celiac by an allergist (MD) and had that diagnosis confirmed by my GI when the gluten challenge almost killed me with a GI bleed.

Whoops, sorry, Raven, my mistake!

[MaryJones2]

In total I have met ZERO doctors who use his test....

Like most of us, I have many doctors. Two of them are mainstream doctors (endocrinologist and rhumatologist) who have many celiac and gluten-intolerant patients. They both find value in Enterolab but do not rely on it exclusively. The more liberal doctor said "Dr. Fine seems to be on to something here so if you can afford it lets see what comes up." The conservative doctor said "Well if enterolab says you have it then you have it." I think Enterolab can be an important part of diagnosis but just like blood tests wouldn't rely on it exclusively for a diagnosis.

[Fiddle-Faddle]

Unfortunately, Rachel, your issues are bound up in this thread's discussion of Dr. Fine because you are using them as "proof" that Dr. Fine's tests are invalid. That is why I quoted you in my previous post. That is also why so many are arguing with you on this thread.

As a mod, you can certainly remove anybody's posts with which you disagree, but to be fair, you really can't have it both ways. If you don't want anyone discussing your issues, don't mention them--and if you're going to remove others' posts discussing your issues, you ought to remove your own as well.

Thank you for finally removing the misleading "gluten-free since" portion of your sig.

[psawyer]

As a mod, you can certainly remove anybody's posts with which you disagree, but to be fair, you really can't have it both ways. If you don't want anyone discussing your issues, don't mention them--and if you're going to remove others' posts discussing your issues, you ought to remove your own as well.

For the record, the removal of posts in this thread was not done by Rachel. That was my action, and Rachel had no input into selecting which posts were removed. Since only Scott can actually delete a post, and he has not done so (yet), I can assure everybody that Rachel has not made any posts in this thread disappear.

[Fiddle-Faddle]

In total I have met ZERO doctors who use his test....and I have seen MANY doctors.

A colleague of mine was recently "diagnosed" by Enterolab, and followed up with a mainstream doctor who considered it, along with his symptoms and dietary response to be a firm diagnosis.

I have heard similar stories from many across the country. You may have seen MANY doctors, but I'd say your experience is pretty narrow.

[Fiddle-Faddle]

For the record, the removal of posts in this thread was not done by Rachel. That was my action, and Rachel had no input into selecting which posts were removed. Since only Scott can actually delete a post, and he has not done so (yet), I can assure everybody that Rachel has not made any posts in this thread disappear.

Sorry, Peter, my bad!

[lbd]

Poor Dr. Fine - I wonder if he knows he creates such controversy!

As far as his not eating at an event, can you blame him? How many of us have been glutened at such things? Also, he is Jewish, so there is a possibility that he keeps kosher which is pretty hard to do at any public event.

I guess time will tell whether or not his tests will be accepted by mainstream medicine (or many people). My guess, based on some of the research that indicates gluten antibodies are found in intestinal mucosa, is that it will. Or maybe not, since mainstream medicine loves to find "cures" in the form of expensive drugs that have all sorts of other side effects and makes big money for big drug companies. Enterolab's tests and admonitions to avoid gluten foods will seem cheap in comparison to the drugs that apparently several companies are testing now to allow gluten intolerant people to eat gluten. I, for one, would rather just not eat gluten.

[Rachel--24]

Unfortunately, Rachel, your issues are bound up in this thread's discussion of Dr. Fine because you are using them as "proof" that Dr. Fine's tests are invalid. That is why I quoted you in my previous post. That is also why so many are arguing with you on this thread.

Actually it was other members who brought up my issues....and not me. This can be confirmed by reviewing the posts.

I have never stated that the fact that I eat gluten without having problems is *proof* of anything. I said that we do not know how valid his test is. ....and I also said that in my case I dont seem to have a problem with it.

I have problems with other foods....and for the most part I understand why that is... as well as what it is that I'm reacting to. Its my body.....and I've been paying close attention to what it tells me.

I dont really see why anyone should be arguing with me about what I eat. If you truelly cared wouldnt you just be happy that I'm feeling better and doing much better than I was a couple years ago? Remember that I was on the diet for 3 years....and nothing changed as far gluten-free making a difference in my condition.

There are other diets I have tried which have proven to more beneficial for me...and I could actually see HUGE improvements in all areas of my health.

My goal is to restore my health.....and thats the bottom line. I dont do things that cause me to go backwards....I only wish to move forward.

I am not the only one on this thread who has found that the diet didnt make a difference one way or the other. I am not the only one on this thread who decided to go back to eating gluten. I am not the only one here who is skeptical of Dr. Fine's stool test based on personal experience. So why on earth do some people feel the need to make my diet into a much bigger issue than it really is??

None of this in my opinion is a valid excuse/reason to argue with me on this thread.

[Fiddle-Faddle]

Actually it was other members who brought up my issues....and not me. This can be confirmed by reviewing the posts.

I'm afraid it can't be confirmed, as 21 posts were removed from the thread.

You say you really want the discussion of your issues to stop, but you are actively continuing the argument. Is it your wish that we read your arguments and NOT respond?

As I keep saying, you can't have it both ways.

[mamabear]

Poor Dr. Fine - I wonder if he knows he creates such controversy!

As far as his not eating at an event, can you blame him? How many of us have been glutened at such things? Also, he is Jewish, so there is a possibility that he keeps kosher which is pretty hard to do at any public event.

I guess time will tell whether or not his tests will be accepted by mainstream medicine (or many people). My guess, based on some of the research that indicates gluten antibodies are found in intestinal mucosa, is that it will. Or maybe not, since mainstream medicine loves to find "cures" in the form of expensive drugs that have all sorts of other side effects and makes big money for big drug companies. Enterolab's tests and admonitions to avoid gluten foods will seem cheap in comparison to the drugs that apparently several companies are testing now to allow gluten intolerant people to eat gluten. I, for one, would rather just not eat gluten.

When I met him in Memphis, he stated he did not have celiac disease, but ate a restricted diet of mostly nuts and grains...kind of a pre-Paleolithic type diet. That was 3+ years ago, so something could have changed since then......never said it was Kosher either.

[Fiddle-Faddle]

When I met him in Memphis, he stated he did not have celiac disease, but ate a restricted diet of mostly nuts and grains...kind of a pre-Paleolithic type diet. That was 3+ years ago, so something could have changed since then......never said it was Kosher either.

A nut-and-grain diet would automatically be Kosher even if you weren't trying to be Kosher, as by definition it would eliminate all non-Kosher foods (non-Kosher meats, non-fish seafood, non-Kosher fish (bottom feeders), and meat-and-milk combinations).

[Jestgar]

You can get anything published somewhere. Having your results in print does not make them any more, or less, valid. If doctor Fine had wished to publish, he could have done it any time. It would only make his testing procedures more valid to people who have no idea about the structure of scientific publishing. Unless he were to choose a top tier journal. it would not validate his testing to any physician.

[Gentleheart]

I think a lot of people may have given up on this thread .

How about a new thread entitled "Group letter to Dr. Fine."

If you think there is honestly enough interest and that it is useful enough to pursue, then to quote a famous captain.......

"Make it so."

[psawyer]

If you think there is honestly enough interest and that it is useful enough to pursue, then to quote a famous captain.......

"Make it so."

I shall take the sub-topic about the letter(s) and make them into a new thread.

Click here to reach the new thread in this forum.

[Mellyelli]

I originally came onto this board hoping that I could get a little more clarification regarding my Enterolab results. I came across this thread and now have a whole lot more to think about.

I am in Canada, and my doctor suggested I have the Enterolab testing done as he suspected a wheat allergy. He told me that he felt that Dr. Fine's testing "is ahead of the curve...so to speak" and felt his work could be trusted. He also mentioned that his lab was a not for profit organization, not that this makes it any more credible, but just interesting that nobody has mentioned it.

So I am off to post as a new topic.....hoping that I can get a little more clarification, as the people on this board seem well versed in "test result" language. My doctor did got through the results with me, but I would still love to hear what other people have to say.

[Gentleheart]

I originally came onto this board hoping that I could get a little more clarification regarding my Enterolab results. I came across this thread and now have a whole lot more to think about.

I am in Canada, and my doctor suggested I have the Enterolab testing done as he suspected a wheat allergy. He told me that he felt that Dr. Fine's testing "is ahead of the curve...so to speak" and felt his work could be trusted. He also mentioned that his lab was a not for profit organization, not that this makes it any more credible, but just interesting that nobody has mentioned it.

So I am off to post as a new topic.....hoping that I can get a little more clarification, as the people on this board seem well versed in "test result" language. My doctor did got through the results with me, but I would still love to hear what other people have to say.

Although this thread started out innocently enough, it kind of got off topic along the way and sometimes sparked a lot of passion in the wrong direction. Most of us have subsequently left it in lieu of a "fresher" thread concerning plans to send Dr. Fine a nice group letter to try to clear up some of the confusion about Enterolab and its tests.

But I would also like to stress this. Many, many people on this board have gotten fantastic results from going on gluten free diets based soley on Dr. Fine's test results. They feel very blessed by his work. And yes, his lab is actually a not for profit organization. Dr. Fine is likely a fine individual, completely dedicated to helping people like us. And most people here who have met or heard him in person, felt he was brilliant. He and his staff have always been very kind to me. The real controversy with Dr. Fine is that some of us have NOT gotten good results with gluten free diets after receiving very positive test results from Enterolab and desperately need clarification as to why, if he has any ideas on the matter. Dr. Fine has also repeatedly promised people for many years that he was "just about to publish" his research. But it never happens and has unfortunately made some strongly wonder about his credibility as a result. That's all. We all would probably agree that we hope he IS right. We hope his tests ARE accurate. We just have many unanswered questions.

You are very fortunate to have a medical professional who recognizes the value of research like Dr. Fine's. Most of our doctors will not even look at it and our frustrations sometimes show up on these controversial threads.

Welcome aboard.

Check us out on the other one.

[JNBunnie1]

I'm curious about something. The issue (real issue, I personally don't care what Rachel eats) here is whether or not Dr Fine's testing method is valid.

Ok. 3 questions for you all.

1. Has anyone on here gotten a NEGATIVE response from Enterolabs? I'm sure there's someone on the board who's savvy enough to find someone.

2. We are a race of people who stoned someone for saying the earth is round. There will ALWAYS be someone to denounce new ideas. Period. Why get so mad when it happens? This thread isn't going to discourage anyone who's looking for answers, and Dr Fine clearly doesn't need you protecting him. It might discourage new people from talking to us......

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?

I haven't used Enterolab, so I'm not really invested in anything to do with Dr Fine. But most of this bickering just doesn't make sense.

[Rachel--24]

1. Has anyone on here gotten a NEGATIVE response from Enterolabs? I'm sure there's someone on the board who's savvy enough to find someone.

Many people have gotten negative results from Enterolab. Some of them have symptoms (which may or may not resolve on the diet)....some have no symptoms at all.

Its the same with those who have had positives....some have symptoms (which may or may not resolve on the diet)....and some have no symptoms at all.

I think that a much higher percentage do get positive test results from Enterolab.

and thank you for not caring about what I eat!