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Gentleheart

More About Dr. Kenneth Fine

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One last question to Rachel: If you are not gluten intolerant/sensitive and have been eating gluten foods for an entire year with no side effects, why do you subscribe to a gluten free forum?

Laurie, its not all about me. The topic we're discussing is Enterolab/Dr. Fine.

If you are interested in how I ended up on this board, the things I've learned along the way, my diet, etc....you can certainly read my posts. Here is the link to the first one. https://www.celiac.com/gluten-free/index.ph...ic=8182&hl=

I started the diet before I joined/posted....and I remained strictly on the diet for almost 3 years. I've posted here on a daily basis for all of that time. I went off the diet (not expecting to stay off of it) during the holidays last year. Do you have any issues with me posting here now that you are aware that I'm no longer gluten-free?

Also, I dont know to what extent gluten is an issue....or if its an issue at all. Dr. Fine is the one who told me it was a major problem....that I have an active autoimmune response to gluten.....and that my high malabsorption was indicative of this. None of the other tests I had done indicated that gluten was the problem.

Isnt that why we're having this discussion in the first place? People want to know how valid this test is.

He is saying (in my results) that I have gluten sensitivity and that I have damage as a result. My own experience is that I only improved by eliminating other problematic foods and gluten doesnt seem to cause me any problems. I can say with certainty that gluten was NOT the reason that I had such a high malabsorption score.

My guess is that I'm sensitive to it because I have leaky gut and other issues. I'm sensitive to hundreds of foods, chemicals, environmental things, etc......some of them cause major problems for me.

I avoid all things that cause obvious distress and as it turns out gluten isnt one of them. I think I'm going to listen to my body above all else....including Dr. Fine at this point....especially since I am doing better health-wise.

But yes.....if he published and the test proved itself to be vaild...or if he were able to answer my questions regarding tTG in stool, etc.....then I might reconsider. However, none of this has happened, his claims become more and more questionable (for me anyways) as time passes and as he continues to repeat the same statement regarding publication of his research.

Maybe I will continue to post here until the day comes that Dr. Fine decides to publish for peer review. Would that be OK with you? In the meantime I guess I have to trust either my body....or Dr. Fine. I think I'll go with the former. ;)

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Ok ok people. Enough with the forum fight. As a scientist, I can tell you there are quite a few things that could be going on here. Here are my thoughts on all the possibilities:

1. Science is slow. Sometimes agonizingly so. He may be still working on some aspects of the study that need to be completed in order to submit a paper for review.

2. He may have submitted his paper to several peer-reviewed journals, only to be turned down. Whether or not he's refining/re-doing any part of the study, it's never good business to advertise that your paper was rejected.

3. He may have been asked to repeat some part of the study to clarify his data before publication, and that takes time.

4. There never was a paper because his methods are not scientifically repeatable. And since he has much to gain from selling tests, books, tapes, etc., he simply says he's going to publish but never intends to actually do it. If anyone tried to repeat a bogus study and come up with nothing and published the results, that would kill his business. Again, this is simply one possibility.

None of us know what the truth is, so you can fight over it until the cows come home but no one is going to win the argument until there's some evidence of what's really going on at Enterolab. It sounds like a lot of people have had positive experiences from the results of their Enterolab tests, and I think that's wonderful. Some of you love Dr. Fine and some of you are suspicious of him. That happens a lot for many disorders. I've got my own list of MD,PhD's that I either love or despise. :lol:

From a professional standpoint, I found this from a quick search on PubMed:

http://www.ncbi.nlm.nih.gov/pubmed/1637764...Pubmed_RVDocSum

"CONCLUSIONS: Neither stool test was suitable for screening for coeliac disease in children with symptoms."

What does this mean? The two tests these researchers tried had too low of a sensitivity to Celiac antibodies in stool and could not accurately diagnose known Celiacs enough of the time to give them confidence in the tests as a diagnostic tool. I don't know what tests they used so it might not be Enterolab's method at all. However, the abstract states that they were trying to repeat two commercially available tests to confirm their validity as a diagnostic tool and neither worked well enough, so there are a couple of companies out there using stool tests that don't seem to stand up to scientific scrutiny. I'd have to read the whole paper to find out which companies and/or tests they used and I don't have access to it at the moment.

I can tell you that if Dr. Fine has perfected a way to increase the accuracy of a stool test from that which is known to the rest of the medical community, he's really going to want to get it right in publication! That being said, there are so many people here who got a positive result from his lab...has anyone here heard of a negative result from Enterolab? I'm new here and just becoming familiar with the issue. He must really be on to something for so many people to get positive results from him. I may be inherently skeptical but I think it would be very beneficial to the advancement of diagnosis and treatment of celiac disease if he's right.

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BACK to Dr. Fine and his Enterolab validity.....

Or, can we assume that both sides of the discussion have been adequately represented? I think my cows are home. ;)

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It has been quite a few posts since there has been one about Dr. Fine or Enterolab, which is, as we may recall, the topic here.

This isn't about Rachel's diet, or anything else about her, or any other board member for that matter. This is about Dr. Fine and his testing methods. Additional posts about that are welcome, but otherwise it is time to move on.

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I started this thread.

I simply wanted to know if anyone could help me determine whether Dr. Fine was a man of character and whether his research was sound and true or whether it was not. I wanted to know that because living a gluten free lifestyle for me has not been a positive experience. I am so proud of all of you who take on this disease with a spirit of adventure and maturity. Perhaps you have support systems and good health results to keep you motivated. I'm sure that makes a difference.

Especially thank you, Joe G. for your balanced and thoughtful post. In spite of extensive Enterolab testing and retesting with continuously gluten positive results across the board, I too have seen no results whatsoever. I too have been repeatedly told by Dr. Fine and his staff that I MUST be getting hidden gluten somewhere and they stand by their tests even if I visibly never see anything. They repeatedly promised me that publishing was imminent. But the gluten free lifestyle is difficult with results. Without results it can certainly seem pointless at best.

I haven't chosen to just stop like Joe did. I keep checking back on this board hoping to read something....anything, so I can make a wise decision. Admittedly, it is intimidating to contemplate going back to normal eating after being gluten free for so long. Right or wrong, Dr. Fine's testing was innocently used by me and many others as the foundation for a very difficult decision. It's our choice and not his fault one way or another. You have rightly stated that he doesn't promise to diagnose anything. But you can't blame a person for wanting to honestly know whether he's legit or not.

Like Joe said. Dr. Fine is probably a brilliant and nice guy, even though some things don't quite add up. But for me this whole thing has just been a long experiment in trying to get well. That's all I ever wanted. And that's why I asked the question in the first place. I don't think anyone knows the answer yet.

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Gentleheart,

I think the your question about Dr. Fine may never be resolved here. Even on the Internet there is little information on Dr. Fine and Enterolabs, excluding this never ending discussion and Dr. Fine's own web information.

I would encourage you to continue to seek medical advise. Unresolved health issues should not be accepted as a compromised quality of live. There is an answer.

I hope you find yours soon. :)

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I think that the reason some of us are so pro-Dr. Fine and Enterolab is because for some of us, his tests did prove to be the answer. I knew that gluten presented a problem for me - there was a direct link between consuming gluten and bloating, migraines, etc. But despite good results from eating gluten-free, I never took it seriously enough, because there was always the speck of doubt in my head. Was I imagining the results of eating gluten-free or was it psychological? I am not a doctor-truster. I've had several bad experiences with family members who were misdiagnosed and mistreated (in the medical sense). I looked long and hard at the Enterolab tests. In fact, the way I found this and other forums was through searching Enterolab in Google. I researched and researched and finally made the decision to go ahead with it. I half-expected to get results back that said I was a hypochondriac.

To my surprise, I had positive results in every gluten area, and also casein. Casein was the final piece of the puzzle for stopping my migraines. They had improved greatly going gluten-free, but not completely. I have no migraines now with dairy products limited to some goat cheeses and kefir. I use almond milk and coconut milk now.

My point is that Enterolab gave me the extra information I needed to go gluten-free for good and get rid of the migraines that I had had for well over 40 years. The results gave me great insight into the problems that had plagued my parents - all linked to DQ1 and DQ2 genes.

My second point is that suppose you are someone who gets negative results from the blood tests or endoscopy, yet you are gluten-sensitive? Suppose your conventional doctor tells you that you have negative results and are not "celiac"? Suppose you continue eating the toxin gluten? Suppose you don't have obvious intestinal problems and are a silent celiac? The dangers of false negatives are much higher than the dangers of a false positive result.

If Dr. Fine's tests can at least point someone in the right direction, that is a huge plus right there. For me, it was a god-send. For others who have posted here, who got positive results, yet gluten-free did not seem the answer, at least you have eliminated the gluten possibility. I am with a previous poster, however, who said that gluten is bad for nearly everyone. I have to agree with this - everything in my biology background is screaming that this is true. It makes sense evolutionarily and physiologically. Did you all notice the study I posted that said that gluten damages epithielial cells? All of them? That is big! Epithelial cells are the linings and coverings of your organs, tubules, etc, including your intestines.

One last thing - I notice so many people develop additional reactions to foods after going gluten-free. I have a hypothesis about this. Could it be that as your intestinal villi heal from years of gluten toxicity, that the villi absorb more of these other nutrients? If you have not been absorbing them properly for years, it is possible that the enzymes needed to digest these nutrients have subsided, similar to what lactase does when a person does not drink milk for years. I wonder if the reactions to other foods is just the body reacting to foods it no longer knows how to handle?

Oh well, enough from me. I think I will go back to lurking for awhile and keep reading. There is a wealth of info here and that is a good thing. I hope those of you who still need to find the answer do so successfully. Best of luck to you all! :) I might be on the other forums for awhile - little less vehemence there ;)

Laurie

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Gentleheart,

I think the your question about Dr. Fine may never be resolved here.

I would encourage you to continue to seek medical advise. Unresolved health issues should not be accepted as a compromised quality of live. There is an answer.

Gentleheart,

I agree that you wont find an answer regarding Enterolab's validity here...none of us will. Dr. Fine may get it right for some people....but certainly not everyone. It doesnt mean that symptoms will never resolve, or that there is no answer to ever be found. There is always an answer...many of us will have to move beyond Dr. Fine's test results in order to find it.

In my opinion if the diet isnt working....or if problems continue to pile up even while strictly gluten-free....then we probably dont have the answer. Maybe we just have one small piece of a puzzle....and more pieces need to be found in order to resolve the health issues.

I agree that we should never accept a compromised quality of life. Keep searching and dont give up!

After a few months of strictly gluten-free I still felt as if my body needed help....things didnt seem "right" to me. In my opinion if the gluten free diet is *the* answer.....then we should benefit from it....our health should improve. If gluten is the whole answer then we shouldnt accept that we must continue to eliminate more and more foods from our diet until almost nothing is left. We shouldnt continue to have chronic symptoms.

It may have been easier for me to come to that conclusion because I had not suffered symptoms for alot of years. I lost my health very rapidly and when the diet didnt clear things up I instinctively knew that I had to look at other possibilities. A body doesnt just remain "broken" for no reason. There is an answer for every person who continues to suffer.

I do hope that you find your answer and are able to improve your quality of life. We all deserve that.

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One last thing - I notice so many people develop additional reactions to foods after going gluten-free. I have a hypothesis about this. Could it be that as your intestinal villi heal from years of gluten toxicity, that the villi absorb more of these other nutrients? If you have not been absorbing them properly for years, it is possible that the enzymes needed to digest these nutrients have subsided, similar to what lactase does when a person does not drink milk for years. I wonder if the reactions to other foods is just the body reacting to foods it no longer knows how to handle?

Laurie

Laurie....I think your so right on this and it seems to fit me.

Years of eating gluten and taking it away for 5 months and feeling like a new woman...then some issues coming up again.........

So then after taking the soy, dairy, casein, nightshades and foods high in oxalates.........has let me after 3 1/2 years .... find the foods that I can use to help me continue healing that gut.

I think alot of damage has to take time to heal. Sure there could be other issues for me...as stated in this thread........but for now it's what i'm doing. I'm sure on heck of alot better than i was 3 1/2 years ago.

Thanks for the post.

Judy

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It may have been easier for me to come to that conclusion because I had not suffered symptoms for alot of years. I lost my health very rapidly and when the diet didnt clear things up I instinctively knew that I had to look at other possibilities. A body doesnt just remain "broken" for no reason. There is an answer for every person who continues to suffer..

Rachel,

Guess we were posting at the same time. I didn't see your post.

Maybe this is a big piece of the puzzle too.

Yours was fast.

Mine started in my early 30's with the dreaded IBS and has been on going for 34 years. The last 3 1/2 years being better anyway.

Seems we keep getting little bits of 'light bulb minutes' info whenever we read on this great forum.

Judy

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One last thing - I notice so many people develop additional reactions to foods after going gluten-free. I have a hypothesis about this. Could it be that as your intestinal villi heal from years of gluten toxicity, that the villi absorb more of these other nutrients?

I wonder if the reactions to other foods is just the body reacting to foods it no longer knows how to handle?

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.

People with lactose intolerance will have symptoms because they lack the enzyme needed to break it down for proper digestion. I would have to assume that if I had lost my ability to digest and absorb all foods/nutrients that I would have suffered some obvious GI discomfort...or various other symptoms. I had no symptoms whatsoever. I also had a "textbook perfect" biopsy.....according to the GI my villi were standing tall and proud.

I got sick almost overnight....very quickly I became sensitive to nearly all foods. It didnt seem like a consequence of having had gluten in my diet for 30 years. It seemed like my body lost its ability to handle *everything* including perfumes, household chemicals and on and on. That type of dysfunction doesnt just come on suddenly for no good reason....and obviously for me gluten was not the answer. Yet I am sensitive to nearly all foods without having any indication of damage to the villi.

I do have some answers now and I do have an understanding of why I react to foods.....its just not related to villi damage caused by gluten toxicity (in my case).

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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.

I was really directing my question to people who do have gluten sensitivity and have had other sensitivities emerge during the gluten-free lifestyle. As you have said, you do not have gluten sensitivity and do not follow a gluten free diet, so my "hypothesis" would not apply in your case. I moved this portion of my post to another area, since it really didn't involve Dr. Fine/Enterolab at all. It will be interesting to see what responses I get from those who have been on a gluten-free diet and have experienced these other problems as well.

Laurie

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Rachel,

Guess we were posting at the same time. I didn't see your post.

Maybe this is a big piece of the puzzle too.

Yours was fast.

Judy,

I feel that having it come on so suddenly was the biggest blessing for me. I honestly dont believe that I would have had the same will to push forward for answers if I had suffered for many years. Nothing would have been as clear to me and I would have considered not feeling well as normal for me.

Like anything else if things are taken away from you gradually you may not recognize how much you are losing until much later when you look back at your life....and the way that things have progressed. If one day you have everything.....and then suddenly it is ALL taken from you....it is very hard to accept this as reality. When this happened to me I was not looking back at my life.....I was looking back only a few weeks. I think that is the main reason that I have been very focused on all of this.

If something comes along and takes everything you have in an instant.....you will naturally fight with everything you have to get back what you lost. I am thankful for the way that it happened because I dont believe that I would have recognized it any other way.

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I think for those who have celiac disease or gluten intolerance (that is NOT triggered by a more serious problem such as Lyme or mercury toxicity), then Enterolab can be and has been a VERY valuable diagnostic tool, perhaps especially for small children, for whom blood tests and endoscopies are notoriously unreliable.

For people like Rachel, Joe, and Gentleheart, Enterolab was not only not a good diagnostic tool, but perhaps it pointed them in the wrong direction? (Unless any of them DO have gluten intolerance, but secondary to something else.)

What we need now is the missing link--we need to know why these people tested positive for gluten intolerance if gluten wasn't the cause, and we need to know what is causing their symptoms.

So instead of bickering about whether or not Dr.Fine's theory is on to something, let's just agree (if we can) that for celiacs/gluten intolerants, yes, Enterolab can provide answers, and for others, it can't. And maybe we can put these great minds on this board to work and figure out the missing link!

It might be something stupid and obvious that everyone has overlooked, or it might be something very difficult to pinpoint.

Lyme would be an example of something difficult to pinpoint.

Thyroid might be something easily overlooked.

For example, my Synthroid dosage had to be steadily increased in the 2 years before my diagnosis. After going gluten-free, I went through what most people here go through ("Oh, so THAT'S what a normal poop looks like!" :rolleyes: ). But several months later, my stools were loose again, and I couldn't figure out why, and I was panicking that I was developing other food intolerances, or that I was being glutened, or that IBS actually exists independently from celiac.

Turned out, my Synthroid dose was suddenly way too high. As my gut healed, I was now able to absorb the Synthroid; before, I wasn't properly absorbing it, which was why it needed to be continually increased.

Hyperthyroidism (or too high a dose af Synthroid) can cause diarrhea. Hypothyroidism can cause constipation.

Rachel, didn't your initial thyroid problems precede your mercury exposure? I would think that your Graves Disease diagnosis does put you at greater risk of gluten intolerance. Is there any possibility that you are mistaken about not having problems with gluten? Remember, many of us here had no visible problems with gluten for most of our lives, and then-BAM.

On an aside, I also wonder if the people who can't tolerate Synthroid, but do better on Armour do so because just perhaps Armour is more easily absorbed, or is absorbed somehow before getting to the villi? (I don't know that it is more easily absorbed, just wondering if it might be.)

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I was really directing my question to people who do have gluten sensitivity and have had other sensitivities emerge during the gluten-free lifestyle. As you have said, you do not have gluten sensitivity and do not follow a gluten free diet, so my "hypothesis" would not apply in your case.

Laurie,

According to Dr. Fine I DO have an active gluten sensitivity which has resulted in autoimmunity and damage. That is why I have been posting in this thread. I did follow the gluten-free lifestyle (just as everyone else here does) and I did continue to lose more and more foods (very rapidly).

Where did I ever say that I'm not gluten sensitive?? This is actually what I said:

Also, I dont know to what extent gluten is an issue....or if its an issue at all. Dr. Fine is the one who told me it was a major problem....that I have an active autoimmune response to gluten.....and that my high malabsorption was indicative of this. None of the other tests I had done indicated that gluten was the problem.

Isnt that why we're having this discussion in the first place? People want to know how valid this test is.

He is saying (in my results) that I have gluten sensitivity and that I have damage as a result. My own experience is that I only improved by eliminating other problematic foods and gluten doesnt seem to cause me any problems. I can say with certainty that gluten was NOT the reason that I had such a high malabsorption score.

My guess is that I'm sensitive to it because I have leaky gut and other issues. I'm sensitive to hundreds of foods, chemicals, environmental things, etc......some of them cause major problems for me.

I avoid all things that cause obvious distress and as it turns out gluten isnt one of them. I think I'm going to listen to my body above all else....including Dr. Fine at this point....especially since I am doing better health-wise.

Why would your hypothesis not apply to me?? I have positive Enterolab results, I was living the lifestyle and I continued to very quickly develop more and more food intolerances.

Check out my sig......its all there. These are the numbers (4 months gluten-free at the time)

Fecal Antigliadin IgA 16 units

Fecal Antitissue Transglutaminase IgA 15 units

Microscopic Fecal Fat Score 912 Units

HLA-DQ Gene Molecular analysis: HLA-DQB1*O301, O501

By the way, I tested negative for casein, yeast and egg.....but I still cant eat these foods....so that didnt help me much either.

Since you are a strong supporter of Dr. Fine and the validity of his tests......then wouldnt you consider me to be gluten sensitive?? Why wouldnt my situation apply to your hypothesis?? :huh:

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Judy,

I feel that having it come on so suddenly was the biggest blessing for me.

If something comes along and takes everything you have in an instant.....you will naturally fight with everything you have to get back what you lost. I am thankful for the way that it happened because I don't believe that I would have recognized it any other way.

Rachel,

wow I think this sums it up so well. I would had done the same thing.

As you know from our other correspondence, a lot of my issues came at the same time with my hip replacement and dental issues. I still haven't ruled that issue out.

I'm just happy your doing so much better and finding answers for your health. I do read along on the OMG thread and keep tabs on you guys.

Judy

EDIT----

geezz.....how can you guys post so fast.

i was just answering Rachel and so far behind. :blink: guess i got up for a minute to fold so clothes.....that'll teach me........ ;)

Alison.....

On an aside, I also wonder if the people who can't tolerate Synthroid, but do better on Armour do so because just perhaps Armour is more easily absorbed, or is absorbed somehow before getting to the villi? (I don't know that it is more easily absorbed, just wondering if it might be.)

Yet another interesting point......I still use Synthroid as i had a goitor and had most of my thyroid removed years ago.

My tests always come back ok so thought it was working :blink:

Lot's of these icons today :blink:

Judy

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For people like Rachel, Joe, and Gentleheart, Enterolab was not only not a good diagnostic tool, but perhaps it pointed them in the wrong direction? (Unless any of them DO have gluten intolerance, but secondary to something else.)

What we need now is the missing link--we need to know why these people tested positive for gluten intolerance if gluten wasn't the cause, and we need to know what is causing their symptoms.

If I'm remembering correctly Joe wasnt mentioning any chronic symptoms. I believe he was just investigating every possibility of Celiac/GI because two of his daughters are diagnosed Celiac's. He has heard Dr. Fine speak....and he ordered the test which came back positive. He lived the lifestyle....being a dad of 2 Celiac's he was already familiar with it. He retested after having been on the diet for quite some time and his Enterolab results went UP rather than down.

The entire time he followed the diet he noticed no difference....no subtle changes....nothing....he went back to gluten and felt the same as he always had. It made no difference for him and the fact that he had been following a strict gluten-free diet was not reflected in his follow-up Enterolab results.

If I dont have my facts right I hope that Joe corrects me....I'm going by memory. ;)

Rachel, didn't your initial thyroid problems precede your mercury exposure? I would think that your Graves Disease diagnosis does put you at greater risk of gluten intolerance.

Fiddle Faddle, I would have to say that my mercury exposure certainly preceded all problems....including the Graves Disease. My mom had 11 amalgams while pregnant with me. I'm sure I dont have to say more about that because I know that you are informed about these things. I also had 4 of my own amalgams.

I had 2 vaccinations (same day, both containing thimerosal) the same year that my thyroid went hyper. I had no other problems until my fillings were drilled out and thats when I lost everything.

In the process of putting all the pieces together I have had genetic testing which identified multiple genetic mutations which would impair my body's ability to detoxify mercury. I'm still waiting for more genetic test results to come back but basically they are the same type of genetic susceptibilities that are identified in the autistic population. I still have mercury toxicity. Hopefully knowing the exact genetic weaknesses will provide my doctors with valuable info. which will improve my chances for excreting the mercury more efficiently. Its the same way that they have been able to successfully pull some kids off of the spectrum.

The infections that I have are a consequence of the compromised immune system.

I think that without a doubt all of these things put me at greater risk for gluten intolerance...but its such a tiny piece of the puzzle (in my case) that there was not any obvious improvement.

That being said, my doctors would like to see me back on a Gluten-free Casein-free diet. Its not considered to be a necessity for me but since my body is heavily burdened and these are added "stressors"...it would be helpful. Removing any known stressors (whatever they may be) is considered helpful.

I just cant do it right now because I dont have enough choices as far as non-reactive foods. My body does require some food and since I'm feeling better with what I eat right now I'm continuing with it until my sensitivities decrease.

I have no problem living a gluten-free lifestyle....I dont need gluten and I dont find the diet difficult to manage. If I am able to tolerate other foods down the road I may go back to gluten-free....I'll make that decision later on.

This is why I would like to see Dr. Fine publish though. Is it really necessary for me to follow the diet? I will never know as long as he keeps his research to himself. If he never puts his test up for peer review....how will I know if its vaild?

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I'm just happy your doing so much better and finding answers for your health. I do read along on the OMG thread and keep tabs on you guys.

Thanks Judy....that means alot to me. :)

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I have to say that I'm a little surprised that my case would be "dismissed" by some...as if I have nothing to contribute as far as the subject regarding the validity of Dr. Fine's test.

Just because I continued to search and was able to get some answers for myself does not erase the fact that I spent a total of over $500 on Enterolab tests which prompted me to live a strict gluten-free lifestyle for 3 years with no benefit whatsoever.

If I had chose to stick it out, live with my symptoms, and wait for my damaged villi to heal what would I have accomplished?

If I went back to Dr. Fine after 3 years gluten-free and asked him why I was not better would he have told me that I'm not careful enough with the diet like others have heard? If there were still antibodies present would he have brushed me off saying that I'm still getting gluten in my diet?

If we are to believe that doctors need to LISTEN to their patients and not dismiss their questions....shouldnt the same apply to someone like Dr. Fine? Shouldnt he be more pro-active in trying to figure out why his test isnt the answer for everyone? I know that if I had developed these tests....and if I were passionate about them....I would want to know why some people arent benefiting at all. If the test isnt accurate I would want to find out why. You cant determine why something doesnt work if you do no follow up....and if you ignore those who are not benefiting.

Again, just because I identified other problems as a cause for malabsorption, etc....does NOT mean that I have nothing to add to a topic regarding Enterolab's vaildity, or that I havent truelly lived the lifestyle. All of these things DO apply to me.....otherwise I would have never been on this board for over 3 years now. I'm pretty sure that if my Enterolab results were negative I would have found no reason to hang around.

If I *hadnt* found any answers and was still in the dark....nobody would be dismissing me. If I didnt have obvious reasons for questioning the validity of his test then people here would have been much more supportive of what I've gone through. Thats the reality of it. Instead of questioning why something doesnt work for everyone (like Fiddle-Faddle did), and try to figure out why that might be, some people just dismiss anyone who didnt benefit from Enterolab's $400 test. Only positive testimonials are welcome.

Of course Dr. Fine will continue to claim that his test is accurate and reliable.....he is obviously not willing to listen to anyone who's experience does not support this.

How can it be said that Dr. Fine has a tool which is very reliable and may someday take the place of traditional tests....and at the same time it is said that a person who tests POSITIVE but does not benefit from the diet and can actually eat gluten without consequence does not actually have a gluten sensitivity??

That makes no sense. Either you believe in the test or you dont. If its a good test then the results should be accurate and reliable to a much larger degree than they truelly are (according to what I've witnessed on this board).

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Well, the suject of Dr. Fine seems to be weqring thin, and about time I would say. I happen to basically agree with almost everyone---aside from the picayune stuff.

Rachel is correct in saying that Dr. Fine, like any good Doctor, should defend his position that gluten is causing her distress when apparently that hasn't been the case. This also happened to me as I stated earlier. Dr. Fine said I was gluten sensistive and was doing damage---I took him at his word, went gluten free, absolutely nothing changed (that I know of), and now I have been eating gluten for the past three years. Am I doing damage now? According to Dr. Fine---yes. but I really do not know, and I suspect neither does Dr. Fine (or anyone else). If Rachel had stayed gluten free, and been retsested by Enterolab, I agree with her that she would have received the same boilerplate reply (eat gluten free and be retested in one year) that I received following restesting.

Many others on this board tested by Dr. Fine were told they were gluten sensitive, they went gluten free and their health improved. Was Dr. Fine correct in these cases? I don't know, and I suspect neither does Dr. Fine, but those improved by his advice are understandably convinced he was correct. There is nothing wrong with this conclusion.

The explanation seems to lie with two issues. First is the confusing nature of gluten sensitivity and celiac disease, and how it affects people differently, that we all know exists. We all want answers, we want specific answers, and we logically expect them from Doctors---but medical knowledge, especially in the shadowy field of autoimmune diseases, is far from perfect. Secondly, the methodology and policies of Dr. Fine are far from clear. He is a strange fellow (I have met and talked to him), he is probably a little eccentric, and he is certainly convinced that gluten is not good for anyone. Combine these two issues and you have reason for argument, attested to by the messages on this board. We all want FACTS but in many cases they are not known.

Two stories add to this confusion. In a question and answer session at a meeting of celiacs, I asked the reknowned and respected Dr. Fassano if gluten sensitivity could be detected by stool anlaysis. He replied that it was not possible, although there was one lab in the country that was trying to do just that (he did not name Enterolab or Dr. Fine and neither did I).

On another occasion I attended a gluten free dinner with about 75 celiacs at which Dr. Fine was the speaker. He spoke BEFORE the dinner, and the host invited him to join one of our tables for a delicious gluten-free dinner. In a somewhat embarrassing moment, he declined the invitation, but after dinner, he sang songs for us all (I assume readers know he is also a singer and musician). 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.

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Twenty-two posts which were off-topic have been removed from this thread, all from within the last 24 hours.

I think this discussion is exhausted, but if it must continue, it must stay on the topic of Dr Fine's testing.

Edited to change the post count to 22, and one more from that range has now been removed.

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Joe,

I agree with everything you wrote. I dont believe that we will ever have an answer to our questions regarding Dr. Fine....although it would have been nice for those of us who didnt benefit from the diet.

Is the test valid or is he just obsessed with his belief that gluten is bad for everyone? Nobody knows the answer but in my opinion his own actions make him seem less credible. His lack of concern for those who do not benefit from his tests/recommendations has made me less of a believer.

I can fully understand that the mainstream would be slow to accept his methods. However, I have spent alot of time with integrative and alternative doctors who are VERY open minded....and who will utilize tests which may not be used by conventional doctors. None of them use Dr. Fine's stool test. In total I have met ZERO doctors who use his test....and I have seen MANY doctors.

I'm kind of puzzled by that. I would have thought that his test (if as good as he claims) would have at least been accepted by the alternative doctors by now. All of the doctors I've seen are familiar with gluten intolerance and with the gluten-free diet.

A few years ago I was a patient at a clinic which mostly focused on Celiac, gluten intolerance, allergies and leaky gut issues. They were very knowledgeable regarding the disease, the lifestyle, etc. The Dr. I saw would occasionally have presentations where he would speak about gluten intolerance....the local gluten-free store would provide samples of gluten free foods, etc.

He is another Dr. who was very focused on gluten being a problem for most people. I mentioned to him that I had been "diagnosed" by Enterolab. He just stared at me with no expression and he said nothing. I asked him if he'd heard of Dr. Fine and he simply nodded his head "yes"....it was an awkward moment for sure.

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.

I dont know exactly what was going through his mind but he certainly wasnt singing praises for Dr. Fine and Enterolab.

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"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.

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