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Gentleheart

More About Dr. Kenneth Fine

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LBD,

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

YES........another welcome and keep bringing your insights to us.

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

Alison beat me to this........I so agree.

We need all the scientific minds we can get to help us here. :)

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I really appreciate the warm welcome! I hope I can contribute. I can't tell you all how much going gluten-free has done for me. The genetic connections explain so much about my family. My mother had digestive problems and migraines all her life, and I suspect the blistery rash she got every summer may have been DH. She died from a rather unusual breast cancer at age 70, apparently not a genetic form. Her aunt had MS. I can't help but wonder if she had gluten intolerance. My father had type 2 diabetes and prostate cancer. He died from the flu (after having the flu shot by the way) last February. His mother had Alzheimer's and diabetes. My whole family history is full of inflammation type diseases. I can't help but think there is a gluten connection on both sides. My older sister was diagnosed with rectal cancer (the same night my father died) and is currently undergoing chemo after radiation and surgery to remove the tumor. She will not even listen to my pleading to stop eating gluten, sigh. My other sister, thankfully, is listening and I hope to help her get the Enterolab tests just to see if there is reason to begin that journey. She has had numerous inflammation type problems as well as persistent vertigo (the neuro connection again). My daughter has migraines, anxiety, etc. She is not ready to do gluten-free yet, because she is in college, but I am hoping to convince her to move in that direction eventually and see if she has relief of her symptoms.

Again, thanks, and thanks to Dr. Fine for providing tests to the rest of us, who may not show up in the standard medical community's spectrum. I think it would be more dangerous to get a negative result to a blood test and not go gluten-free, then get a positive from Enterolab and go gluten-free. After all, grains are not a necessary part of our diet. We just like 'em but we can do without 'em.

Laurie (who apologizes for hijacking this thread!)

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Laurie (who apologizes for hijacking this thread!)

Laurie.........you didn't hijack this thread IMO :lol: It's all on topic about the original questions asked. These threads take turns and hicups all the time. Glad to have you.

I think Gentleheart has been getting alot of opinions to her questions.

We old time posters learn new things here all the time.

Judy

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Again, thanks, and thanks to Dr. Fine for providing tests to the rest of us, who may not show up in the standard medical community's spectrum. I think it would be more dangerous to get a negative result to a blood test and not go gluten-free, then get a positive from Enterolab and go gluten-free. After all, grains are not a necessary part of our diet. We just like 'em but we can do without 'em.

Laurie (who apologizes for hijacking this thread!)

Welcome Laurie, I share the opinion that celiac is not a disease but a difference (we are a real minority) so I am especially glad to have you on board. :D

I wasn't diagnosed by Enterolab but did testing a few years after diagnosis when my DD went off the diet in college because genetic testing showed she didn't have DQ2 or DQ8. Turns out I had 2 copies of DQ9, a real oddball celiac gene. We know she got at least one of them so at least it allows her to watch out for RA and a rare form of adult onset Type 1 diabetes that are also associated with it. I feel that Enterolab does have value as a diagnostic tool and can supply some needed information.

I am unfortunately someone who can heartily vouch for the damage that can be done when someone repeatedly tests negative on blood work. I would give anything to have known about Enterolab at any time during the 15 years of serious illness before I was finally diagnosed. Anything that can help others not go through what I went through is IMHO a good thing.

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Welcome as well to LBD.

Dr Kenneth Fine last published in 2001 in at least 2 journals. If you'll reference a search on Pub Med and put Fine KD in the search, you will pull up his publications. It apparently is not that he can't get published, but rather MAYBE on this particular research.

I met him in Tennessee ~3 years ago when he came for a talk. He was here because he was cutting a track at a recording studio( he's in a rock band), and agreed to speak to the celiac group. I asked him directly about him publishing his material(had a 2 hour talk) and he had no reason of explanation.

I don't know if he's in it just for the money, or if he's really found something and can't nail it down for publication.

At any rate, I wanted all of you guys to know he has creds....as recently as 2001, but nothing in PubMed since.

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I would give anything to have known about Enterolab at any time during the 15 years of serious illness before I was finally diagnosed. Anything that can help others not go through what I went through is IMHO a good thing.

Raven, I hear ya sister! I went 20 years un-dx'd (IBS) of course was my tag. I've always had serious weight gain issues. No one every thought or, I THINK' knew about celiac to test me for it. It was the uncontrolled "D" that had my Internist test me for it. I hadn't known about the condition at the time.

My blood work was really low compared to the others I'd read about here, but it was a celiac DX. I did the enterolabs for the casein and soy and esp. the genes which I have. Just my little piece of the puzzle. I sure hope others will find their way to a 'accurate' dx to help them heal........by what ever testing methods they choose. I also, don't want others to lose years of health and damage by not getting a dx that will help them.

Judy

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I think that the very best situation we can get is to have a good, knowledgeable doctor who is up-to-date on the latest in celiac diagnosis. If we all had that, there would be no need for Dr. Fine and Enterolab. But let's take a look at the titles of some of the other threads in the Doctors section of this site. One of them is "Uphill Battle with Family and Doctors". Another is, "Doctors Just Don't Understand". Another is "There is Stupid and Then There is Stupid". Another is "Top 5 Reasons to Get a New Doctor" with 9 pages of horror stories. Another is "Tips for Finding a Good Doctor", subtitled," Another Frustrating Experience...." The fact is many have pooped out with doctors. Some of us have insurance companies to deal with and can't just keep going from doctor to doctor until we find a good one.

Enterolab gives us another option when we've run out of options. And options are good! I didn't care that he hasn't published, and I'll bet many who are healthier now because of eliminating gluten due to his testing method don't care, either. If you don't like him, don't use him. What's great about his method is that you can use it after you've already gone gluten free, or gluten lite. Many have instinctively cut out gluten on their own, and now cannot use regular testing methods without going back on gluten, which they are not ever going to do.

The bottom line is that there are people who are healthier because of his testing methods, and that's a great thing!

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I think that the very best situation we can get is to have a good, knowledgeable doctor who is up-to-date on the latest in celiac diagnosis. If we all had that, there would be no need for Dr. Fine and Enterolab. But let's take a look at the titles of some of the other threads in the Doctors section of this site. One of them is "Uphill Battle with Family and Doctors". Another is, "Doctors Just Don't Understand". Another is "There is Stupid and Then There is Stupid". Another is "Top 5 Reasons to Get a New Doctor" with 9 pages of horror stories. Another is "Tips for Finding a Good Doctor", subtitled," Another Frustrating Experience...." The fact is many have pooped out with doctors. Some of us have insurance companies to deal with and can't just keep going from doctor to doctor until we find a good one.

Enterolab gives us another option when we've run out of options. And options are good! I didn't care that he hasn't published, and I'll bet many who are healthier now because of eliminating gluten due to his testing method don't care, either. If you don't like him, don't use him. What's great about his method is that you can use it after you've already gone gluten free, or gluten lite. Many have instinctively cut out gluten on their own, and now cannot use regular testing methods without going back on gluten, which they are not ever going to do.

The bottom line is that there are people who are healthier because of his testing methods, and that's a great thing!

Finding a knowledgable celiac doctor is no small feat,and I agree with you there, Cinnamon. Paying cash money for a test that is based on unsupported medical findings in a doctor who REGULARLY published in the literature for 30 times until 2001.....and then says he has trouble getting published???? is a problem in my mind.

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Welcome to the board Laurie (LBD). No railroading is allowed!!! ;)

I have never heard celiac disease, and gluten intolerance explained quite the way you explained it, and man, does that make sense. Thank you.

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.

Wonderful points!!!

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?

Sometimes I wonder too. Most of us do not really care who is celiac, and who is gluten intolerant. In my opinion, everyone of us would be celiac eventually, without the intervention of gluten free. They tell us the "gold standard" for celiac is an endoscopy showing flattened villi, yet I do not understand how that can be true, if in actuality, there are other problems that flatten villi. I am double DQ1, subtype 6, intolerant of all grains, nightshades, and several other foods, along with peripheral neuropathy, arthritis, and sleep apnea. My PCP says he doesn't care what Quest Labs say, I am a celiac, no ifs, ands, or buts! To each, their own!

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I would think that if you looked at Dr. Fine from a traditional science point of view, his work might and does meet quite a lot of resistance from the regular medical industry. That would make it difficult for him to get published. It certainly sounds as if many, if not most, of the people on this forum have run up against the same ignorance in the medical community. And haven't there been other studies that do reference the antibodies in stool tests as being accurately indicative of gluten intolerance? If I were Dr. Fine and I were helping people recognize their gluten intolerance, I might also skip the whole publishing thing. It takes a lot of money and time to set up controlled studies of the sort to be published. And, with the wide spectrum of symptoms and genetic links that gluten intolerance has, it would be nearly impossible to do a comprehensive study of the type that would show his results to be unequivocably valid. He has to rely on what people report back to him as far as symptoms go and that type of study is always difficult to validate.

More and more studies seem to be coming out that indicate this is a much more far-reaching problem than ever thought. I still think that the problem lies in the view of gluten intolerance. It makes so much more sense to me to regard this as an evolutionary difference rather than a disease or disorder. It explains everything, especially the regional differences. There are those of us who just do not have the genetic components necessary to digest gliadin and it is not due to a mutation, like so many other disorders, but instead because we have the original makeup traced back to ancestors who never had to deal with digesting grains because we didn't eat them. And if we continue to eat the stuff, it takes a toll on our bodies, and in some genetic configurations, a greater toll than others.

Laurie (lbd)

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I would think that if you looked at Dr. Fine from a traditional science point of view, his work might and does meet quite a lot of resistance from the regular medical industry.

Doctors in the US in particular seem to be resistant to the more sensitive tests. The best example is the mucosal challenge. This is where they use a gluten suppository (used for rectal challenge) or apply it to the membranes of the mouth and then biopsy the tissue about 3 hours later. These tests are very sensitive but are not in use here because of that sensitivity. It seems to me that at least here doctors really don't want us to be diagnosed until we reach the end stages of total villi destruction. Heaven forbid they should even screen the population to pick up the folks that should obviously be tested, like folks with IBS, skin or neuro issues. Doctor Fine is likly to run into the same resistance precisely because his test picks up the antibody reaction at times before total villi destruction.

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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?

Should I leave? :( I wouldn't dare say a thing like that :o

I've never taken a survey, but I think I'm in the minority here as it is. I have a feeling it's the ones who are diagnosed that are looked down upon. I say very little for fear I'll offend someone as it is. :(

neesee

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Did he say he was having trouble getting published? I was just guessing based on knowledge of the system, but didn't know that he had tried.

He did say he was having trouble being published. Must have been 3 years ago in Memphis.

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Should I leave? :( I wouldn't dare say a thing like that :o

I've never taken a survey, but I think I'm in the minority here as it is. I have a feeling it's the ones who are diagnosed that are looked down upon. I say very little for fear I'll offend someone as it is. :(

neesee

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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?

LBD

I can say that I never once felt prejudiced against when I joined this forum almost a year ago. I came here totally clueless; I had stumbled across my gluten intolerance purely by accident. Everyone here was informative and helped me immensely.

As another poster said, we all have to navigate around this diet; Celiac or not. This is an online support community for those who are endeavoring to be gluten free, there are no stipulations.

Besides which, you have the celiac genes, so you would be excluded, now wouldn't you? ;)

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Although there are a few participants here who may exhibit a bias, the board is here to support everyone who follows a gluten-free diet, regardless of the reason. The owner of the board, Scott Adams, has celiac disease, as do I. For me, a gluten-free diet is not a lifestyle choice; it is essential for my survival. But anyone who comes here looking for support about the diet is welcome. I don't care why you came here; my mission is to help you achieve your goal.

Please don't be put off by a few members who judge others. We are not here to judge or to be judged.

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Great Post Peter...........Thanks

I agree totally.

Judy

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It seems to me that at least here doctors really don't want us to be diagnosed until we reach the end stages of total villi destruction. Heaven forbid they should even screen the population to pick up the folks that should obviously be tested, like folks with IBS, skin or neuro issues. Doctor Fine is likly to run into the same resistance precisely because his test picks up the antibody reaction at times before total villi destruction.

Raven, great points! My GI told me that since I "only" had Marsh 1 (no villi destruction but changes at the cellular level) that I only had a "mild" case of celiac and wouldn't have to be as careful. Nuts to that.

Then my son's GI said that since I "only" had Marsh 1, that some docs don't even consider that I have celiac and that made it unlikely that my son would have celiac. Very poor logic, espcially given my response to the diet.

I'm with Raven that some/most/many doctors think "Celiac" is only total villi destruction, and I think that's bogus.

And for the record, I would never look down on non-celiacs and I don't think (or I hope) that no-one else does.

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(ravenwoodglass @ Nov 9 2008, 08:27 PM)

It seems to me that at least here doctors really don't want us to be diagnosed until we reach the end stages of total villi destruction. Heaven forbid they should even screen the population to pick up the folks that should obviously be tested, like folks with IBS, skin or neuro issues. Doctor Fine is likly to run into the same resistance precisely because his test picks up the antibody reaction at times before total villi destruction.

Exactly Raven. Well said.

psawyer Posted Yesterday, 10:56 PM

For me, a gluten-free diet is not a lifestyle choice; it is essential for my survival.

This is a perfect example, and yes, I have felt looked down on by you and others before. Gluten free is not a lifestyle choice for me either, nor for most everyone on this board, it is essential for our survival too. If you are gluten intolerant or celiac, the prescription is the same. Many celiac's get diagnosed by accident, the doctor is looking for something else, because the patient hasn't complained about intestinal problems. Then those celiac's come here and can not understand how sick a person can be who does have intestinal damage, because they haven't lived it. Then some of us get to feeling like hypochondriac's because we do have so many things going on at one time. We are all the same, and very different at the same time. I was never tested at the right time, because I didn't have insurance, nor the money for testing, now I can't be tested, I can't afford to do a gluten challenge, my body can't handle that kind of abuse. Because of all the years of misdiagnosis, I now have peripheral neuropathy, raynauds, arthritis, and many other intolerance's.

Doctor Fine is likly to run into the same resistance precisely because his test picks up the antibody reaction at times before total villi destruction.

This is my feeling too Raven. I read everything I can about celiac/gluten intolerance. I feel the research is still in it's infancy. They know which genes definitely cause trouble, yet they do not know yet how the other genes are involved. Doctors like Dr. Fine, who keep chipping away, is where the research is at for now.

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The owner of the board, Scott Adams, has celiac disease, as do I. For me, a gluten-free diet is not a lifestyle choice; it is essential for my survival..... We are not here to judge or to be judged.

Peter, I think you have been very helpful on this board.

However, I think that there are different levels of bias; Bias might not be intended, but it is there.

You say you are not here to judge or be judged, but your statement (that as a diagnosed celiac, gluten-free is not a lifestyle choice but essential to your survival) implies that for gluten-intolerants, it's a choice. That IS a judgment, isn't it?

That's why there is a perception of bias.

For those here who may or may not have celiac, but who have severe symptoms in response to gluten, and especially for those who have other autoimmune damage/disorders that are OBVIOUSLY caused by gluten, you imply that it is still a lifestyle choice!

If it's a "choice" for people like Ravenwoodglass, who continually tests negative for celiac, but whose life is risked with gluten exposure, then it's a choice for biopsy-confirmed celiacs, too.

It does seem to me that many of the diagnosed celiacs here agree with the doctors that it's not celiac/it's not vital to be gluten-free until your villi are obviously damaged.

Please remember, those with DH don't always HAVE villi damage. It stands to reason that there would be other (neuro, thyroid, pancreas, whatever) gluten-induced autoimmune damage to the body without villi damage, too.

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