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More About Dr. Kenneth Fine


Gentleheart

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Jestgar Rising Star
neesee, your approach to Dr. Fine sounds as though you have an ax to grind, which doesn't make you sound unbiased and fair. What if he can't publish because of corruption in the industry?

You can always publish somewhere.

It's not that common for industry to publish research. There's no point. It's rarely groundbreaking and they don't need to prove themselves in order to justify funding.

If enterolab finds antibodies in your stool, then you are making antibodies. It would be very difficult to correlate antibody production in stool with how you feel, and "I feel better without gluten" is not hard data.

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cruelshoes Enthusiast
Also, the figure of 1/133 having celiac is incorrect. The 2006 University of Chicago stated that 1/133 have already been diagnosed with celiac--after an average of 11 years of seeking a diagnosis. That implies that far more people actually have it--they just have not yet been diagnosed.

Although it is OT from the original post, and with all due respect to you, I don't think those numbers are correct. According to the University of Chicago:

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Prevalence of Celiac Disease in the United States

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neesee Apprentice
neesee, your approach to Dr. Fine sounds as though you have an ax to grind, which doesn't make you sound unbiased and fair. What if he can't publish because of corruption in the industry? Knowing what I do, that's my first assumption.

And I'd like to remind you that the"gold standard" of diagnosis by endoscopy is deeply flawed, as it only diagnoses late-stage celiac; under current medical practice, if your villi aren't visibly damaged (or if the doctor just happens to hit an undamaged patch), you are told not only that you don't have celiac but that gluten is not a problem.

It seems to me that Enterolab does a huge service to those who either have celiac or gluten intolerance but have negative biopsies.

Also, the figure of 1/133 having celiac is incorrect. The 2006 University of Chicago stated that 1/133 have already been diagnosed with celiac--after an average of 11 years of seeking a diagnosis. That implies that far more people actually have it--they just have not yet been diagnosed. And both the U of C study and several publications (including Against the Grain and Celiac Disease: a Hidden Epidemic say that the 1/133 figure is just the tip of the iceberg.

It just seems to me, if Dr. Fine is such a great and caring doctor he would want to share his information with the rest of the medical community. That way his testing could be more widely available to the public through their own personal physicians. Instead, he chooses to keep it in some obscure little lab in Texas where he is the only one who uses the test,and the only one who makes a profit. That makes me extremely suspicous of him and his motives. I don't get it. It can't be on the level.

neesee

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Rachel--24 Collaborator
Fiddle faddle, I totally agree. And many of us have tried alternative healings and testings which have not been "validated." No one forces anyone to use Enterolab. If we respect others doing alternatives but not Dr. Fine, we are not being consistent IMHO.

I think the problem with Dr. Fine is not that his test can be considered "alternative" but that he has made alot of claims....without making any effort to back them up. ANY doctor who stands up to large groups of people EVERY year and makes the statement that he is going to publish for peer review and then does not make good of it...well....in my opinion they deserve to be questioned.

How many people purchased his tests after hearing him speak...and believing everything he was saying?? I'm betting alot do....and that they are convinced that his tests are more vaild than any other test because he is able to "diagnose" them BEFORE they have damage. He leads them to believe that he's about to publish....which also makes it sound as if this test is truelly worth something and possibly of great value to the medical community. From what I understand he is a very good speaker.....but he is not following through.

By not publishing he is saying something entirely different in my opinion.

I'm all for alternatives and for having an open mind.....but I do not support people who are not honest and who do not make good of their word....and offer no explanation as to why. In the meantime he continues to make a great deal of money from people who are under the impression that the test actually gives them an answer.

In many cases.....it does not provide an answer as to why a person is sick. As previously stated this can be very dangerous. Many people are waiting to see if 1-2 years off of gluten improves their health...and in the meantime they may have serious undiagnosed health issues which are not being investigated. I fail to see the good in that. He does not ever acknowledge that gluten intolerance can be brought on by other health problems which in my opinion is very irresponsible.

I certainly feel that after having been given the benefit of the doubt (for many years now) it should be expected that people will lose faith and start to question his motives....afterall we have been WAITING for years. Frankly, I dont believe that he was ever "about to publish".

I feel that I am consistent in what I have respect for and in what I would support....and it would be inconsistent of me to say that I feel this doctor deserves all of that....even though he hasnt done anything to validate the test which is making him very rich.

It would be a different story if he had not made so many claims with regards to his method of testing, quoted statistics from his studies, made promises to publish, etc. etc.

Maybe he has decided that peers who treat him that way are not important to convince.

In my opinion if he had made this decision he wouldnt be telling the people (who are paying for these tests) that he is about to publish for peer review. Unless of course, his interest is more in making money than anything else....which would be a very sad thing.

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Rachel--24 Collaborator
Also, the figure of 1/133 having celiac is incorrect. The 2006 University of Chicago stated that 1/133 have already been diagnosed with celiac--after an average of 11 years of seeking a diagnosis. That implies that far more people actually have it--they just have not yet been diagnosed.

Fiddle Faddle,

The figure comes from a study which involved the screening of both high-risk and low-risk populations. It is not based on Celiac's who are already diagnosed.

I posted this in an older thread.....had to go looking...here's the link to the study.

The new study, which is the largest multi-center, epidemiological study ever on the prevalence of celiac disease in the U.S., took place over five years and included blood samples from 13,145 people, including adults and children. The purpose of the study was to look at the disease's prevalence in both "at-risk" and "not at-risk" populations.

Nearly 9,000 people were considered "at-risk" because they either had relatives with celiac disease, symptoms such as diarrhea or abdominal pain, or other disorders associated with celiac disease, including diabetes, Down syndrome or anemia. More than 4,000 study participants were considered "not at-risk."

The study found that among "at-risk" participants, celiac disease was present in one out of 22 people who had first-degree relatives with the disorder. It was also present in one out of every 68 adults with celiac disease-associated symptoms and one out of every 25 children with symptoms. Among those study participants who were considered "not at-risk," celiac disease was found in one out of every 133 people.

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Rachel--24 Collaborator

Another thing that I personally dont agree with is the fact that if you have a high malabsorption score (I am one who scored high).....he leads you to believe that this malabsorption indicates damage directly related to gluten.

There is absolutely NO way that he can come to that conclusion. These are two *seperate* tests and there are many things which can cause or contribute to malabsorption. In my case the malabsorption was mostly unrelated to gluten.

Again, he does not make much of an effort to make it clear that the malabsorption may NOT be caused by gluten in some (or many) cases.

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darlindeb25 Collaborator

I think you are wasting time arguing. Dr. Fine has made his place in the gluten intolerance world. Even if he doesn't have published work for peers, he still has excellant info out there. He does research gluten intolerance, which is a good thing. Obviously, he has a huge spot in the celiac/gluten intolerant world. He is helping people, and that is what matters. All doctors make money off of us, not just him, and he should be making money, it's his job. As for the pricing of his tests, they seem in line with all the other testing companies.

I find nothing he does any more questionable then much of what we see out there.

I feel that I am consistent in what I have respect for and in what I would support....and it would be inconsistent of me to say that I feel this doctor deserves all of that....even though he hasnt done anything to validate the test which is making him very rich.

That's only your opinion Rachel. Much of what you always are pressing us to believe is controversial too, yet you push it and push it. His validation comes in recovering patients, patients who tell others how happy they are to have found him. That's wonderful validation, in itself. IMHO, I would rather he kept working at finding out the what's and why's of gluten intolerance, instead of spending time publishing something for his peers. It appears to me, that his work obviously is out there all ready!

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happygirl Collaborator

1 in 133 haven't been diagnosed.

Link to full study, out of University of Maryland: Open Original Shared Link

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Nancym Enthusiast

Enterolab makes no bones that they don't diagnose celiac disease. He does have a lot to say about gluten sensitivity though. I'm miffed that he hasn't ever published but I don't doubt he's got a good way to detect if gluten is causing an autoimmune reaction.

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JennyC Enthusiast

There is a certain process that scientists and doctors go through in order to communicate their findings to the scientific community and and to start the process of getting their method approved for clinical use. Publishing in a scientific journal is the very first step. It enables one's peers to critique and evaluate one's work. Often first attempts to publish are even turned down because of their method design or lack of evidence for their conclusion. Then one must apply for grants for clinical trials and there are tons of hoops to jump through in this process.

So why has he skipped all of this and jumped directly to the money making part? :huh:

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Darn210 Enthusiast
So why has he skipped all of this and jumped directly to the money making part? :huh:

Don't you think that it has a lot to do with the age that we live in?? He doesn't have to publish or be reviewed by his peers because he is "successful" without it. Doctors aren't recommending him/Enterolab . . . people are . . . over the internet through message boards such as these. Twenty years ago, he wouldn't be able to pull this off. If he helped a handful of people, how many people could they in turn effectively reach/tell back then . . . today it's a whole different story. There is no incentive for him to publish. He doesn't need the respect of his peers, he's got plenty of business without it.

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Rachel--24 Collaborator
I think you are wasting time arguing. Dr. Fine has made his place in the gluten intolerance world. Even if he doesn't have published work for peers, he still has excellant info out there.

I prefer not to argue...and I believe that its good to share both sides of an issue. People who are interested in the validity of this type of testing and in Dr. Fine himself can make a more informed decision if they are not only seeing one side. When I joined this board all of the info with regards to Enterolab was one sided and that prompted me to order the tests (without doing alot of research first). If I were making the decision today I would order the gene test....and nothing else....but thats just me.

I agree that he has made his place in the gluten intolerance world......but as previously mentioned this is mainly because of people promoting his test on message boards such as this one. He is well known because he offers something that many who are desperate for answers are looking for. Most of these people have been put through the ringer by the medical community and for around $400 Dr. Fine can make us feel as if we have an answer (even if we truelly dont).

Is he well known because he has done something significant to make his mark? I dont think so.....but thats just my own opinion. The majority of the medical community has never heard of this guy (both mainstream and alternative).....if he had a valid test which could stand up to peer review....why would he hold that back?? Wouldnt he want his test to be recognized so that it can be more widely used to HELP people. It doesnt make sense that he chooses not to take the next step.

There are MANY people out there who research and who do studies....and who share that info. with the public....but not all of them are charging up to $400 for services for which they are unwilling to put forth for peer review.

That's only your opinion Rachel. Much of what you always are pressing us to believe is controversial too, yet you push it and push it.

Yes....these are my opinions and I stated that they are my opinions....we are all entitled to have them.

I discuss various topics that I learn about....only so that people who might benefit from the info. have other things to investigate if all else fails. Comparing the risks of exposure to mercury to the validity of Dr. Fines test is comparing apples and oranges. Its pretty well understood that mercury is harmful to human beings.....it has never been proven to be safe at ANY level. So while the topic may be a contoversial one (especially with regards to vaccines) there is actual evidence to support what I'm saying. Many, many studies have been published with regards to mercury's toxicity in human beings.

Its not like *one* Dr. is out there saying this and charging people $400 to "diagnose" mercury toxicity .....without publishing anything to validate what he is doing.

Like I said...I'm all for alternatives (I think this has been pretty obvious). However, I feel that Dr. Fine has taken advantage of people who are desperate. I've been fortunate to have been able to experience all sorts of "alternative" methods of testing. These other methods are known worldwide and are practiced by doctors or practitioners everywhere. People tend to share and teach what they know when they have a genuine interest in healing and when they have discovered something that can help with that. You know.....its that whole "spread the knowledge" thing.

Why isnt Dr. Fine doing that?? Why is he STILL the only person in the entire country doing this type of testing.....you would think he would want to share this with the medical community. I've seen plenty of alternative doctors over the past few years and none of them know of Dr. Fine.....nor do they use his test. Do you know what they do? They simply put their patients on the diet because people who are chronically ill do much better without these foods (and most of them have leaky gut).

Bottom line is that if Dr. Fine wasnt in the process of publishing for peer review.....he shouldnt have been saying that he was.

In my opinion its not necessarily his method of testing that makes him seem less credible......its his own actions.

His validation comes in recovering patients, patients who tell others how happy they are to have found him.

This doesnt say anything about the validity of his test. I can tell people who are sick to stop eating gluten and many of them will feel better. He's charging $400 for that....I can pass that same info. to people right here at this site.....for free. We can all do that.

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GlutenWrangler Contributor

I agree with Rachel on this. I was one of the many duped into thinking that his test was the answer to my problems 2 and 1/2 years ago. I suspected that his results would be published shortly, but it's obvious that he has no plans on doing so, even to this day. It is a widely known fact that removing gluten and dairy from the diet of leaky gut patients helps to improve their condition. Dr. Fine just charges $400 to tell you that.

The main argument for Dr. Fine is that he helps people, and people find that alone to be enough validation. But anyone who opts for Dr. Fine's testing already believes that they may have a problem with gluten. It would be just as helpful to them to do some research on this site, and start a gluten-free diet. Then, they could credit this site for helping them, just as they would with Dr. Fine's questionable results. I will say that the one beneficial test that Dr. Fine runs is the genetic test, but that's the only one with proven validity.

So with the fact the Dr. Fine has "helped so many people", many believe that he needs no further validation from the medical community. That it's ok for him to be a "maverick" in the medical community. But there is a system in place that is followed for a reason. Peer review is there to help advance or disprove new discoveries in medicine. It is for the overall good of medicine. Any doctor that deliberately avoids this process should not be given the same kind of respect or consideration as others who do follow this process. Especially considering that he is the only doctor in the country who performs these tests. He works under the guise that he's on a mission to help those who are suffereing, but he rakes in substantial amounts of money with no accountablility. You can make the argument that most doctors make money off of us, but most doctors are performing time tested, proven, valid tests, and we pay them through our insurance. For most of us, Dr. Fine's tests are out of pocket. I think Dr. Fine owes it to the people who have paid for his tests to publish, and see if his work really can stand up to peer review.

-Brian

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Jestgar Rising Star

Again, let me point out, he has no reason to publish. None. He has a product, and people buy it. For him to choose not to publish at this point says nothing about his character, good, or bad. He's just a guy with something to sell.

Many people on this site have said that just feeling better without gluten isn't enough for them; they want a test. Well, he provides a test. Everyone is happy.

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neesee Apprentice
Again, let me point out, he has no reason to publish. None. He has a product, and people buy it. For him to choose not to publish at this point says nothing about his character, good, or bad. He's just a guy with something to sell.

Many people on this site have said that just feeling better without gluten isn't enough for them; they want a test. Well, he provides a test. Everyone is happy.

Then maybe it's time for people to stop endorsing his test. If we manage to shut down his business, he might just be forced to publish. That is... if he really has a valid test.

neesee

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Rachel--24 Collaborator

I think the main reason that people expect Dr. Fine to publish for peer review is because he has SAID that he was going to do this. He has said this numerous times...he made that claim and yet he has not made any attempt (that anyone is aware of) to follow through on this.

How many people actually based their decision (to pay for his test) on the fact that he was "about to publish"? I believe that it makes his test look more valid when he is presenting it in this manner....which is obviously misleading since he hasnt actually published anything as of yet. He has been "about to publish" for several years now.

I think it does say something about his character.

Of course he has no reason to publish....if he knows the test will not stand up to peer review and if people are buying the test anyway....why should he mess with a good thing? Intentionally misleading people in order to sell the test....is wrong in my opinion. Not to mention the health risks involved for those who believe that they will recover because Dr. Fine says the gluten-free diet is the answer for them.

In the end not everyone is happy with his tests....some people are happy and others are not.

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darlindeb25 Collaborator
How many people actually based their decision (to pay for his test) on the fact that he was "about to publish"?

I honestly think most of the people who hear him speak, or try his product, do not really care if he has published anything. They are buying from him, his experience with the product, and the results they have heard from others. They don't care if he has reported his findings to his peers, that means nothing to them in their lives.

I think it does say something about his character.
I do not. I think it simply says he spends his time perfecting his product and doesn't worry about what his peers are thinking. It's about us, not them.

Of course he has no reason to publish....if he knows the test will not stand up to peer review and if people are buying the test anyway....why should he mess with a good thing?
I doubt he feels his product would not stand up to peer pressure, he probably knows it will, and doesn't have the time to worry about it. If people are buying the product anyway, then they wouldn't listen to his peers either. Every product out there has hordes of people who love it, and another group who doesn't. It's human nature.

In the end not everyone is happy with his tests....some people are happy and others are not.
This is true of anything. So many of you tell us to use probiotics, personally, I feel they are a waste of money, yet many, many people use them, thinking they are doing the best thing for them. Lots of us use vitamins, but how many people actually make sure the vitamin they are taking actually has everything it says it does??? So many vitamins do not contain the proper vitamins, or the most valuable, but people still buy them. Even Dollar Stores have vitamins, and how good is a vitamin that costs $1???

He does what he does, and many people love him for his product. The ones that do not, simply do not need to buy from him, or read about him. That's the bottom line.

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lbd Rookie

I am fairly new to this forum. I have been reading for quite some time, but have not posted, except for a response to folks in PA. At any rate, I suspected that I had problems with gluten for some time (mostly severe migraines, joint aches, etc). I did not have the intestinal maladies that many people suffer. I toyed with the gluten free diet for about a year, but cheated from time to time, since I did not have a specific diagnosis. Finally, I came across the references to Enterolab. I got the test, sent it off, and waited, half expecting to get it back telling me I had no problem with gluten at all.

I got the results and found out that I have the DQ2 and DQ1 genes and that I have positive results to the gluten, casein, malabsorption, and transglutaminase tests. DQ1 explained a lot - it is connected with the neuro side of gluten intolerance, thus the migraines, brain fog, odd restless leg symptoms, etc. I stopped eating gluten completely then, no cheating, and EVERY SYMPTOM WENT AWAY. It was amazing - no migraines for over a year now. I have had a couple of very mild headachey migraines, that were easily controlled with Tylenol, and coincided with hormonal cycles, but nothing like the horrible kind that used to make me want to die.

I have a B.S. in Biology, teach anatomy and physiology and biology, have two Masters - one of which concentrated on Immunology, Microbiology, and Evolution. I researched Dr. Fine thoroughly. He is out of Baylor Medical, for Pete's sake, a well-respected medical institution. To publish results, one has to jump through all sorts of hoops. To be published, your work must be peer-reviewed and you must have a source of funding, usually a grant, that enables you to set up a controlled study. In my opinion, Dr. Fine found the connection between his stool and gene tests and gluten intolerance and decided to continue with his work helping people that way, instead of wasting time on returning to a formal study. I find it interesting that the same people who clamor for published research from Dr. Fine, claim to have Candida infections, heavy metal poisonings, and all sorts of other maladies and recommend rememdies that are loosely based on science at best.

I am also amazed that so many people on the forum seem to regard gluten intolerance as a disease. First of all, genetic-based disorders are just that - disorders, not diseases (caused by bacteria, viruses, prions, viroids, etc). In the case of gluten-intolerance, basically you do not have even have a genetic disorder. Instead you (and your ancestors) have genes that have NOT mutated. Your ancestors did not go through the evolutionary process of responding to the pressure of having a toxic substance introduced to the population they lived in. Therefore, your genes are the original genes of the earliest ancestors as far as response to gluten is concerned. You do not have a disease - you are responding normally to a toxin in your food. Some of you unfortunately have the genetic makeup to respond severely - thus, celiac "disease." Others, like me, respond less so, though, in my opinion, severe migraines are no joke.

I guess that will get me booted off the list or flamed, but whatever. There is an incredible amount of non-science spouted on this forum, yet for some reason, Dr. Fine, whose tests are valid and science-based, gets ridiculed. If it wasn't for Dr. Fine's work, I would probably still be toying with the gluten-free diet and second-guessing whether this was all in my head or not. Time after time, people report negative blood tests, yet they have obvious response to the gluten-free diet, so why are these tests called the "gold-standard"? They sound pretty shoddy to me. As for the endoscopy, do you really want to wait until you have villi damage to start the gluten-free diet? I wish there was a forum for people who have gluten intolerance without the celiac genetics, because I feel as if there is a definite prejudice against those who do not have celiac here. Is there one?

I am sorry - that is not a very nice introduction to myself, but I think it needed to be said.

LBD

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JennyC Enthusiast

lbd, welcome to the board. I don't think anyone here has a prejudice against anyone with "gluten intolerance." We all must navigate the same diet together. I'm sure that you have noticed that sometimes there can be passionate debates around here. That is because everyone goes about diagnosis and the gluten free diet a little differently, and people generally have strong feelings about some topics.

I too have a background in science. One BS in molecular biology and I will get my second next year in clinical laboratory science (I will be the one running the laboratory tests). There are hoops the scientific community must go through for a reason. It is to ensure their research techniques and results are valid, and to protect people. If he refuses to jump through these hoops, it leads one to believe he might fall short of those hoops.

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Jestgar Rising Star
I find it interesting that the same people who clamor for published research from Dr. Fine, claim to have Candida infections, heavy metal poisonings, and all sorts of other maladies and recommend rememdies that are loosely based on science at best.

There is an incredible amount of non-science spouted on this forum, yet for some reason, Dr. Fine, whose tests are valid and science-based, gets ridiculed.

Worth repeating. Nicely said.

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jerseyangel Proficient

LBD,

Welcome to the board!! I hope to see you posting lots more in the future :)

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DingoGirl Enthusiast
I guess that will get me booted off the list or flamed, but whatever.

I am sorry - that is not a very nice introduction to myself, but I think it needed to be said.

LBD

:)

I am thrilled with your "introduction," and your statements, based in strong scientific study. And, I learned something! Stay here, we need you.

Welcome! :)

Although - one point - you mention this:

In the case of gluten-intolerance, basically you do not have even have a genetic disorder. Instead you (and your ancestors) have genes that have NOT mutated. Your ancestors did not go through the evolutionary process of responding to the pressure of having a toxic substance introduced to the population they lived in.

From what I understand, the "toxic substance" as we now know it wasn't so toxic historically - that wheat/etc. has been genetically selected/mutated in the last couple of hundred years to contain twice as much gluten as original wheat, useful for all the mass-produced, dough-y "foods" so common in modern culture.....and that wheat/original gluten was NOT toxic to the consumers.....thoughts on this?

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lbd Rookie

Yes, I understand the need for the hoops. But perhaps he feels he can do more good going ahead with the tests as is, rather than consuming an inordinate amount of time jumping through those hoops. I just had a problem with one poster who said that "real" doctors do this and that. First of all, I doubt anyone would say he is not a real doctor, and secondly, the tests that are currently the "gold standard" certainly seem to have many flaws. My point is that if his tests help people to commit to the gluten free lifestyle, like they did for me, and we see excellent results, then why not? It's my $400 after all (I imagine the blood tests and endoscopy run far more than that). And, if the genetic tests come back indicating the more traditional celiac genetics, then that would inspire someone to continue with the more accepted tests from the standard medical community. I guess I just don't understand the reliance on the peer-reviewed standard when there seems to be a lot of less than scientific reliance on other ideas on this forum. It doesn't seem as if the blood tests have much more reliability in diagnosing gluten intolerance nor are the endoscopy results very reliable.

Since my genetics are not in the traditional celiac group and lean more toward the neurological end, the Fine tests helped me to commit more completely to gluten and casein free (less successful with casein I have to admit) and also to convince my family that this was a real issue. Without doing the tests, I don't think I would have the commitment and would still be having migraines, restless leg syndrome, foggy brain issues.

It's a personal decision, I guess. My point is that peer-reviewed is not the be all and end all of proof. There are lots of peer-reviewed studies out there that have subsequently proven to be incorrect. Look at all the peer-reviewed drug studies that show good results, then end up having the drug pulled from the market later.

It's just one indicator of good science and the time and money involved in setting up the research may not be open to Dr. Fine. I don't think it is right to call him a charlatan just because he doesn't publish, however.

Thanks for the welcome - i"ll try not to be so long-winded in the future!

Lbd

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lbd Rookie

I'll have to do some more research, but from what I have read, you are right, today's wheat etc has more gluten, but that gluten, or more specifically, gliadin, has always been toxic to those of us who have the original setup of genes. We have never had the ability to digest these grains, because our ancestors tended to move away from the populations in the areas that later developed the use of these grains. Knowing how natural selection works, I would guess that the first humans who ingested glaidin grains, had some severe intestinal and other problems, and those that could cope genetically did, and those that did not, did not survive (celiac!). Those of us whose ancestors moved north and did not ingest grains, never did change because the environmental pressure was not there, thus the clear regional differences in sensitivity. It's a fascinating topic for a evolutionary biologist and I would love to see more research on that end of things. As one who has never liked to be sick, I guess I prefer thinking that my ancestors just took a different evolutionary path and that didn't include grains and I am do not have a disease, but I am genetically different (the original product as it were!). Even cows fed an exclusive grain diet get sick (read "The Omnivore's Dilemma" by Michael Pollan). Birds and rodents seem to be the only animals that can feed on grains and not get sick.

I guess I have had a lot of this saved up for some time. I am certainly wordy this morning! :)

Laurie (lbd)

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Fiddle-Faddle Community Regular

I think some officially-diagnosed celiacs do have a prejudice against those following a gluten-free diet whose tests were not positive for celiac. But just as many or more do understand that the current tests only diagnose end-stage celiac.

At any rate, it's great to have people with a real science/research background aboard!

I agree that the hoops are there for a reason, and on the face of it, it IS a good reason--but as I said in a previous post, I know too much about how much power the pharmaceutical industry has in medicine (both practice and research), and how much corruption exists even in scientific circles--my trust in the system has been destroyed. So even though good reasons exist for the hoops, the whole thing is kind of a joke with such corruption. Pharmaceutical companies are able to bury research indicating a lack of safety with any of their products; doctors follow suit and either keep mum to avoid losing their own grants, or blacklist their colleagues for daring to rock the boat.

The reason I never bothered with Enterolab was that I didn't feel I could afford to wait another moment before going gluten-free (I had just had my first appearance of what I believe was DH, and it was worse than anything else I've ever experienced), and by the time I'd been on the diet a few weeks, so many of my other disorders were improving (which I didn't expect) that I felt I already had all the answers I needed.

But if Enterolab can give answers to someone who is NOT getting them from their doctors, and who needs proof BEFORE starting the gluten-free diet, then I'm all for it.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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