Group Letter to Dr. Fine

[lbd]

I don't "worship" anyone, Neesee. I did my research thoroughly when I looked into his testing. He has not published, but there have been other published reports which do put validity into using stool tests for the identification of gluten antibodies. I paid my money and I got results which seemed to back up what was happening with me with regards to gluten and casein. The casein connection gave me the final piece of the puzzle.

This is not worship - this is an anecdotal reference for a testing service that worked for me. Consider how many people on this forum have complained about the lack of a positive result to a traditional test either by blood test or endoscopy, yet they have gotten great results from a gluten-free diet. I think this test is as reliable as anything the traditional medical community has managed to come up with.

I do not worship any person, but conversely I wonder about those that feel the need to condemn someone that they have no interest in. I do admire Dr. Fine for pushing the boundaries of traditional gluten sensitivity boundaries. I wish more doctors would push the boundaries of all areas of medicine. If you don't use his testing service, then why complain?

Laurie

[sbj]

I hope he does answer positively so it can all be settled.

It's quite obvious that this will never be settled. If Fine's defenders don't care that he has not responded to this point, then I, as a Fine detractor, refuse to read or acknowledge any reply that he might eventually provide. I don't care one whit if he ever does respond.

After reading all of these heartfelt responses - and fidster's kind response - I just want to say that I believe we can all get along and agree to disagree about this. It should be obvious to all that no matter the reply we are all stuck believing what we already believe. No minds are going to be changed no matter the outcome here. I have therefore concluded that there was no point to sending the letter in the first place.

[neesee]

I don't "worship" anyone, Neesee. I did my research thoroughly when I looked into his testing. He has not published, but there have been other published reports which do put validity into using stool tests for the identification of gluten antibodies. I paid my money and I got results which seemed to back up what was happening with me with regards to gluten and casein. The casein connection gave me the final piece of the puzzle.

This is not worship - this is an anecdotal reference for a testing service that worked for me. Consider how many people on this forum have complained about the lack of a positive result to a traditional test either by blood test or endoscopy, yet they have gotten great results from a gluten-free diet. I think this test is as reliable as anything the traditional medical community has managed to come up with.

I do not worship any person, but conversely I wonder about those that feel the need to condemn someone that they have no interest in. I do admire Dr. Fine for pushing the boundaries of traditional gluten sensitivity boundaries. I wish more doctors would push the boundaries of all areas of medicine. If you don't use his testing service, then why complain?

Laurie

I had no trouble at all being diagnosed with traditional medicine. The gastroenterologist came into my hospital room and took one look at me sitting there in my pediactric pajamas, crying and shaking,and he started arranging all the tests for celiac. I had never heard of it back then. The nurses didn't even know what it was.

So yes, for me, traditional medicine is the way to go. When medical society approves of Dr. Fine's methods and starts using them for diagnostic purposes then I can say I'm wrong about him. I doubt that will happen anytime soon.

When you've been through all the traditional tests, and they are negative,but you know gluten bothers you, just go gluten-free. I don't understand why you need enterolab's permission to go gluten-free. 400$ buys a lot of gluten-free food and supplies.

I don't appreciate being badgered about my opinion on Dr Fine. I should be allowed to express my opinion just like anyone else here. Even if I don't agree. It just seems like unless you agree with the majority, you should keep your mouth shut. This forum is for support. I wouldn't feel right telling someone to use enterolab for a diagnosis. Especially when it comes to their precious children.

To the best of my ability, I will always give proper advice. Yes, I do make mistakes, but I will never advise someone to use enterolab.

Denise

My friends call me neesee

[sbj]

I don't appreciate being badgered about my opinion on Dr Fine. I should be allowed to express my opinion just like anyone else here. Even if I don't agree. It just seems like unless you agree with the majority, you should keep your mouth shut. This forum is for support.

Well said, neesee! It is those who express the minority viewpoint on this forum (defense of traditional western medicine) who need the freedom to express themselves without fear of badgering, not those who express the majority opinion.

[rinne]

What an interesting thread.

I have not been tested through Enterolab but I have mentioned it to others as a diagnostic service some on the board have used.

That was a very well written letter and certainly deserves a response but it doesn't surprise me that he hasn't answered yet, I would give him more time, I would think three months but maybe that is too generous.

I hope you will excuse me for wandering a bit.

As I was reading this thread it reminded me of the Igenex Lab story regarding their testing of Lyme disease. They had such a high number of positives that they were accused of improper work, the investigation proved that they were the best lab and that the other labs were missing Lyme.

I had Igenex do my test. I spent a lot of time in Lyme World.

I think the reason almost all Igenex tests for Lyme are positive is that Lyme is an epidemic. I don't think everyone will get sick with Lyme but I think it is there in our blood and I think once you are ill enough to pay hundreds of dollars for tests it shows up.

Just as I suspect gluten intolerance/celiac is an epidemic appearing in many disguises such as diabetes, arthritis, depression.....So, Dr. Fine's tests may well be completely accurate for pretty much everyone tested because once you are ill, you are looking for it.

I would be interested to know the percentage of those tested that come out positive versus negative. I would also be interested in seeing what would happen if a perfectly healthy person was to be tested.

And I really wonder how people are still testing positive for gluten if they know they are following a very strict diet, I am going to assume this is "no processed, could be cross contaminated foods". (Like those chicken things!) I don't think the response by Dr. Fine is sufficient.

Still wandering.

I bought this great cook book, the"Everyday grain free Gourmet" and on page 2 it says,"Although the SCD is now followed by people with all sorts of conditions, it was first developed in the 1920's to treat Celiac disease."

What's up with that?

The idea of gluten free only came about after the second world war and while it works for many it does not work for all. I wonder if some who have relied on Dr.Fine's testing might have been better to explore the SCD.

Okay I think I wandered too far off topic and I apologize but having spent all this time writing it I am still going to post it.

[JNBunnie1]

I had no trouble at all being diagnosed with traditional medicine. The gastroenterologist came into my hospital room and took one look at me sitting there in my pediactric pajamas, crying and shaking,and he started arranging all the tests for celiac. I had never heard of it back then. The nurses didn't even know what it was.

So yes, for me, traditional medicine is the way to go. When medical society approves of Dr. Fine's methods and starts using them for diagnostic purposes then I can say I'm wrong about him. I doubt that will happen anytime soon.

This comment has nothng to do with Dr Fine, or the letter.

Neesee, you got lucky. Period. There's a reason it takes an average of seven years to get diagnosed in this country, and that is because our healthcare system is not trained to diagnose Celiac. I would ask you to please keep this in mind when advising people to put their trust in this system.

[happygirl]

Remember that the "majority" and "minority" often spoken of here only applies to those who speak up - and does not necessarily reflect views of all members. Sometimes the loudest voices appear to be the majority (on any topic).

Often the disagreements here ensue not because of the "topic" but the "tone."

[sbj]

This comment has nothng to do with Dr Fine, or the letter. Neesee, you got lucky. Period. There's a reason it takes an average of seven years to get diagnosed in this country, and that is because our healthcare system is not trained to diagnose Celiac. I would ask you to please keep this in mind when advising people to put their trust in this system.

Has Dr. Fine responded yet?

I don't feel that forum members should be monitoring the appropriateness of other members' posts - that's why we have moderators. Many here are interested in hearing Neesee and I don't feel her post was out of line in the least.

We all understand that many people have not been diagnosed in the past because their doctors did not check for celiac disease. However, this can't apply to new members of this forum who are just now attemtping to obtain a diagnosis. If you read this site then you know to ask your doctor about celiac and request the celiac panel, genetic test, and/or endoscopy. A blanket statement that the 'healthcare system is not trained to diagnose Celiac' is simply untrue and I would ask posters to keep this in mind when condemning the entire indutry - including Dr. Fine. I did not have symptoms, did not request any testing, and was diagnosed out of the blue while they were looking for something else entirely. Evidently my gastro and pathology group had enough training to diagnose Celiac in me even without any hint that I had celiac. Sweeping and inaccurate generalizations don't help move this discussion forward. We can all do our part to help train medical professionals by telling forum members to ask for the appropriate tests - that way folks won't have to go for years without a diagnosis.

[Jestgar]

I don't feel that forum members should be monitoring the appropriateness of other members' posts - that's why we have moderators. Many here are interested in hearing Neesee and I don't feel her post was out of line in the least.

The moderators cannot read every single post. We need everyone to be respectful of each other AND to mention if they feel a post is off topic (as long as it's done politely).

This forum is for everyone. Why shouldn't every take responsibility?

[happygirl]

I set a bunch of posts to invisible, and ask that members be nice to each other. I'll keep setting it to invisible and issue warnings at that point. If you have something to discuss, please continue it here, on topic, or in another thread, in a respectful manner, or via PM. PMs are subject to all board rules, as well.

[shayesmom]

I believe he was sent a registered letter. That means he had to sign for it.

I would love to be wrong about the guy. I hope he responds to Gentleheart soon. How can you mistreat someone who is as kind and trusting as she is? It's just wrong.

neesee

Coming in a bit late for this post, but I do have a comment. As a whole, the letter was well-written and addressed a lot of the concerns in regards to Dr. Fine's work with Enterolab. However, there were parts that could be construed as a bit accusatory in tone (the mention of "unfulfilled" promises to publish). And the simple fact that it was sent via registered/certified mail....while that's great for proving he received/signed for the letter....it also sets up a scenario where the recipient could assume that legal action may be pending. So it wouldn't be a surprise to see the letter go unanswered. It may be proofread by an attorney at the very least prior to Dr. Fine responding.

I'm feeling a bit torn on this topic. Everyone has made some very good points on both sides of the argument. Personally, I'm of this opinion. If you can get a "formal" diagnosis...then great. This *should* be the first avenue pursued. But if the tests come back negative, I feel it's the individual's choice to then pursue other options. For some, trialing the gluten-free diet may be best (and the most economical). But there are plenty of people out there who don't want to commit to this diet without some sort of written confirmation that gluten is the problem. And there, Enterolab may be of help.

For those who have tested negative via conventional methods and "positive" via Enterolab with no resolution of symptoms upon trialing the diet....you need to keep on digging. I've seen plenty of mainstream advice suggest that it could take up to two years to see improvement on the gluten-free diet (for those with dx'd celiac disease). And I've seen information on refractory sprue which suggests there is no real "end" in sight for some. We all need to weigh this information and decide just how far we have to take things in order to find real answers. This may delve into more conventional testing or perhaps dealing with doctors in the alternative fields. For me, I don't care which way a person goes as long as they find a way that leads them to better health.

A previous poster wisely stated that the persistent arguments really have nothing to do with content, but rather...with tone. We're all stuck in the same boat. Our goal should be to help each other get to a better place. Not to tear each other down based on who had "proper" testing done and who did not. It's inappropriate to attack each other over what means we've had to take to get better. We should be working on helping each other get to that place. Period.

[Mtndog]

For all the posters on this thread, some posts have been set to invisible on the thread by various moderators, including myself. Please respect each other according to rule #1 of the board so that the thread will stay and not be closed. Feel free to RESPECTFULLY disagree but personal attacks warrant warnings.

Carry on (nicely)!

[sbj]

I believe this is on-topic. I am reading an interesting article in the NY Times regarding brain damage in the NFL and there is the following quote regarding peer reviewed studies:

Dr. Ira Casson . . . said he could have no reaction until the McHale case and other recent C.T.E. findings appear in a peer-reviewed scientific journal.

[shayesmom]

The problem with a peer-reviewed study that involves 6 people out of the whole NFL is that even if published, there will be criticism of the small sampling. And then there's plenty of room to suggest that the condition is a temporal association. "Correlation does not equate to causation". We see that argument used constantly when it comes to parents who had their children regress into autism immediately following certain vaccines. Thousands of these claims have been made and yet it's all construed as "anecdotal", despite case studies done that suggest a relationship (and others done to nullify it). The skeptic in me sees this article and sees that the NFL has launched its own study....and I have no doubt that it will be contradictory in conclusion to whatever this first one says. They will find another "cause" of C.T.E..

The skeptic in me also has major issues with putting all of one's stock in peer-reviewed studies. This is a prime example why (and please forgive the source of my link....I couldn't get the original article from The Scientist to work. For those interested, I believe the article is named "A case of mistaken identity").

Open Original Shared Link

I must say, I'm not understanding the vehemence towards Dr. Fine. I understand skepticism. But I don't know a single doctor out there who has a track record of being 100% correct on every single case he/she takes on. Peer-reviewed studies don't even have that kind of solid support. There's always an exception to the rule. And relying solely on peer-reviewed studies can result in stagnation as far as medical discovery. It's more of a CYA approach to medicine. This doesn't always work out so well for patients who have conditions that are considered untreatable. And many people here have been in the position of having their health issues regarded as being driven by psychiatric issues as opposed to being driven by something physical. Should these people just throw up their hands and admit to having mental problems because all the gold standard tests declare they are absolutely "normal"?

And suppose that Dr. Fine does end up publishing and that other researchers can then back up his findings. What then? I would be willing to bet that even with peer-review, there will still be patients who won't have their health issues resolve on the gluten-free diet. Basically, that would negate the value of his tests for some. I guess I am not seeing how any test can be 100% accurate for each individual. And who knows? Maybe Dr. Fine hasn't published because he's finding a significant sampling of patients who aren't responding to the diet, despite positive results to the stool test. That may take some time to sort out as far as finding alternative causes for the antibody production (Rachel's candida/gluten info is interesting when viewed from that perspective).

[Fiddle-Faddle]

Shayesmom wrote almost everything I wanted to, except she wrote it way better than I would have!

I just want to add an example of the result of a well-known drug that was "successfully"peer-reviewed.

This is from Discovery science magazine--I think it was the August 2008 issue? I can't find an internet link right now, but I have a houseful of extra kids due to a snow day, so I don't have a lot of time! Hopefully, someone else can find it.

It was an article about how the pharm companies skew studies to get their drugs approved. In Lipitor, for example, according to this article, Pfizer conducted their studies in such a way as to ERASE those who had side effects bad enough to make them need to stop taking it before the study ended. Those patients were not listed as having had bad side effects, or any side effects at all. They were listed as "non-compliant."

In addition, 2 patients died during the study. They were listed as successes, because their cholesterol was lowered at the time of death.

There have been wrongful death suits aimed at Pfizer because the doctors did not believe that their patients were having dangerous side effects due to the Lipitor, and told them that they had to keep taking it--with disastrous results. I was able to quickly find links for that:

Open Original Shared Link and Open Original Shared Link

[Judyin Philly]

As I was reading this thread it reminded me of the Igenex Lab story regarding their testing of Lyme disease. They had such a high number of positives that they were accused of improper work, the investigation proved that they were the best lab and that the other labs were missing Lyme.

So, Dr. Fine's tests may well be completely accurate for pretty much everyone tested because once you are ill, you are looking for it.

I would be interested to know the percentage of those tested that come out positive versus negative. I would also be interested in seeing what would happen if a perfectly healthy person was to be tested.

And I really wonder how people are still testing positive for gluten if they know they are following a very strict diet, I am going to assume this is "no processed, could be cross contaminated foods". (Like those chicken things!) I don't think the response by Dr. Fine is sufficient.

I bought this great cook book, the"Everyday grain free Gourmet" and on page 2 it says,"Although the SCD is now followed by people with all sorts of conditions, it was first developed in the 1920's to treat Celiac disease."

Such good points Rinne!

Thanks for the views and SCD info.

Judy

For all the posters on this thread, some posts have been set to invisible on the thread by various moderators, including myself. Please respect each other according to rule #1 of the board so that the thread will stay and not be closed. Feel free to RESPECTFULLY disagree but personal attacks warrant warnings.Carry on (nicely)!

Laura and Bev,

Thank you for making some invisible so that this thread can continue. I really care about this issue and hope to see the results of the letter posted when/if it comes.

I do appreciate you mods keeping a watchful eye on this topic and the miss use of board rule #1.

Judy

[JNBunnie1]

I'm curious what sort of testing other countries offer and what sort of process their medical researchersare required to go through to get their processes verified. Countries like Italy and Ireland where testing and diagnosis seem a much more common thing. How are their doctors trained? Would someone like Dr Fine be allowed to 'practice' in another country?

[shayesmom]

I'm curious what sort of testing other countries offer and what sort of process their medical researchersare required to go through to get their processes verified. Countries like Italy and Ireland where testing and diagnosis seem a much more common thing. How are their doctors trained? Would someone like Dr Fine be allowed to 'practice' in another country?

I really am not certain that it has that much to do with training. But I have read that ALL children are screened for celiac disease by the age of 11 (at least in Italy). It's quite frustrating to see it get put on the back burner here. The AAP now wants to screen EVERY child for autism by the age of 2.5 because autism affects 1 in 150 kids. Yet, there is absolutely no motivation to screen all children for celiac disease when it affects 1 in 133. Never mind that many kids with autism also benefit from a gluten-free diet. It's hard to understand how these issues are being actively addressed.

From my experience, there also seems to be a lot of resistance from pediatricians and other doctors when it comes to the diet itself. Not only do they not understand it....but I've had several tell me..."You don't want to be on that diet. It's IMPOSSIBLE!". I find the diet to be challenging at times (only due to other allergies to dairy, soy and egg)...but impossible? Not really. And it's better than standing by watching my daughter dying in front of me while the pediatrician was threatening us with CPS because we "obviously weren't feeding her enough pasta, bread, cheese, and butter". We also got threatened with CPS when we told that same pedi we were going to seek a second opinion. Her threats forced us in that office once every two weeks for six months straight before we finally convinced her to at least run allergy tests and refer us to a GI. Talk about being "ripped off". I spent well over $400 in co-pays at all of those office visits...and we have excellent insurance coverage compared to many.

There are charlatans everywhere. Dr. Fine is under no obligation to respond....just like our former pedi didn't respond when presented with the dramatic recovery my daughter made on a diet appropriate for her. The senior pediatrician of that practice did apologize profusely to us and commended us on our persistance in the face of what his colleague did to us. But I'll never set foot in that office again for treatment. And I suppose that's why I don't bat an eye when other people forsake the same treatment and attempt to get answers through unconventional methods. To each his own. The world isn't perfect and neither are its inhabitants. I never paid Dr. Fine any money to get answers. But I did pay a small fortune to get none.

[JNBunnie1]

I really am not certain that it has that much to do with training. But I have read that ALL children are screened for celiac disease by the age of 11 (at least in Italy). It's quite frustrating to see it get put on the back burner here. The AAP now wants to screen EVERY child for autism by the age of 2.5 because autism affects 1 in 150 kids. Yet, there is absolutely no motivation to screen all children for celiac disease when it affects 1 in 133. Never mind that many kids with autism also benefit from a gluten-free diet. It's hard to understand how these issues are being actively addressed.

From my experience, there also seems to be a lot of resistance from pediatricians and other doctors when it comes to the diet itself. Not only do they not understand it....but I've had several tell me..."You don't want to be on that diet. It's IMPOSSIBLE!". I find the diet to be challenging at times (only due to other allergies to dairy, soy and egg)...but impossible? Not really. And it's better than standing by watching my daughter dying in front of me while the pediatrician was threatening us with CPS because we "obviously weren't feeding her enough pasta, bread, cheese, and butter". We also got threatened with CPS when we told that same pedi we were going to seek a second opinion. Her threats forced us in that office once every two weeks for six months straight before we finally convinced her to at least run allergy tests and refer us to a GI. Talk about being "ripped off". I spent well over $400 in co-pays at all of those office visits...and we have excellent insurance coverage compared to many.

There are charlatans everywhere. Dr. Fine is under no obligation to respond....just like our former pedi didn't respond when presented with the dramatic recovery my daughter made on a diet appropriate for her. The senior pediatrician of that practice did apologize profusely to us and commended us on our persistance in the face of what his colleague did to us. But I'll never set foot in that office again for treatment. And I suppose that's why I don't bat an eye when other people forsake the same treatment and attempt to get answers through unconventional methods. To each his own. The world isn't perfect and neither are its inhabitants. I never paid Dr. Fine any money to get answers. But I did pay a small fortune to get none.

Ouch. I'm glad your gorgeous little baby is better now.

[rubyred]

Not to single anyone out, but I noticed sbj said in a previous thread that he is a silent celiac. Perhaps your view would be different if you went through years and years and years (etc) of being horribly sick and noone being able to tell you what is wrong. I see that you usually say "I hope you don't have Celiac" in your replies. I can appreciate that you do not wish a disease on anyone, but I actually would welcome the diagnosis. I've gone through many tests and procedures. I do want an answer, and if it happens to be Celiac, well that is great!! A disease I can control through my diet - wow. Better than having many other diseases, in my opinion.

Sorry if this was off topic and may get erased, I just wanted to express my opinion.

[Lisa]

Discussions are great, especially when they are in a direction for the common good.

[mamabear]

If it has already been 6+ weeks since the letter was signed and sent(I did sign..) and there's no response, it is doubtful in my mind that (1) he actually received it and (2) that he intends to answer. Other people can sign for doctors ,like front desk staff. Gentleheart, did you get the receipt back? It will have the signature of whomever signed it. Maybe you could contact that person and inquire as to it being given to him??

[Gentleheart]

Hello everyone,

I called Enterolab to check on the status of our letter. I talked to a very knowledgeable staff member who graciously shared the following information with me, previewed my post and gave me permission to share it with you.

Our letter was definitely received and read by Dr. Fine and his staff. As some of us suspected, they wanted the information they gave us to be accurate and useful and did not want to give a hasty response. And it was also received just prior to a major holiday break. But in addition, they get many letters, emails and phones calls full of similar questions and concerns continually. Since preparation to publish groundbreaking research of this type is indeed a formidable logistics task, particularly when time is of the essence, Dr. Fine has prioritized his work to allow for the optimum amount of time possible to complete this task. His gluten-free family camp, speaking engagements and 2008 Taos conference were scheduled far in advance and took precedence last year. He and his staff work to the best of their ability to educated the public regarding immunologic food sensitivities while processing laboratory orders, getting patient results delivered accurately and on a timely basis and helping interpret those results for patients and practitioners alike. Answering questions about when Dr. Fine's article may be submitted for publication is a small fraction of their workload, but it is probably one of their most difficult tasks given the arbitrary timeframe of research writing, coupled with Dr. Fine's very hectic schedule.

But specifically because of OUR letter, Dr. Fine decided to add another detailed question/answer to the FAQ part of his website. It may ultimately benefit the most people this way. We sincerely thank Dr. Fine for taking time to personally do that.

Dr. Fine happens to currently be on a 3-6 month sabbatical, for the precise purpose of finishing the very paper in question. He took time away from that task to post this new FAQ as a direct response to our letter. The sabbatical was determined to be the best way to give him the time away he needed to concentrate exclusively on the paper and hopefully get the job done. Dr. Fine is not interested in sharing information before it is ready. The staff member was very clear on that. He needs and wants it to be absolutely correct. That is why he is not running around giving out a lot of detailed preliminary information. We may be frustrated by that because we are the ones out here physically suffering, but as a scientist, he is correct in treating such important and controversial research with precision, patience and protocol. It will likely prove to be a wise decision for everyone in the long run.

We may have thought that Enterolab was being silent and inactive. But on the contrary, they have actually been VERY busy. The Enterolab staff has been hard at work preparing to roll out several new accurate tests that may help answer some of the very questions we have been asking. They are expecting to soon offer 2 expanded separate ELISA food sensitivity panels of 11 foods each. Also in the works is research into offering a total secretory IgA test and a fecal pancreatic enzyme test. No one is more keenly aware than they of the many unknown facets of this complicated disease we are all fighting. They know we desperately need information and are trying to work on what they deem the most useful at the moment. Since we are correct that persistently high malabsorption tests in particular are the most telling and can be due to other problems as well as just gluten sensitivity alone, these addtional test panels could prove very valuable in that area. They are also increasingly finding that many individuals just do not seem to tolerate ANY grains whatsoever and others are being confused by their yet-undiscovered additional sensitivities to milk, eggs, yeast and soy. They told me that many people only test for the gluten issues and do not choose to check out their sensitivity to those other extremely stimulating foods or realize their possible great importance in the total picture.

In the name of even better statistical accuracy and increased clarity, in 2006 Dr. Fine and his staff also made the difficult decision to go back and do tedious additional research concerning long term results from dietary compliance. All of these decisions take time and yes, definitely took MUCH time away from Dr. Fine's paper getting finished, right at the very time when he was pushing himself and promising many of us to get it done. I got the impression that they are very determined that this research be absolutely accurate and well prepared no matter how long it takes. It may have always been their resolve to make it happen as quickly as possible, but the paper will be done when it's done and no corners dare be cut just for time purposes or because of uncomfortable peer pressure. But in the meantime, the Enterolab research team is most certainly not sitting idle or unaware of our eagerness to view and benefit from these discoveries.

The staff member shared one more exciting piece of information as well. There has been talk that another very well-known researcher/physician in the area of gluten sensitivity/celiac disease recently has let it be known that he is now at least considering the possibility of stool testing as a future viable diagnostic resource! This is certainly NOT to be taken as any specific endorsement of Enterolab, but they thought it was very interesting, nonetheless. Though this has not been announced in any official way as of yet, we'll see where it goes.

I know there may now be a sweet temptation by some to begin vigorously debating the subtle nuances and "hidden meanings" of Enterolab's verbal response to me and Dr. Fine's written response on the Enterolab site. Sometimes the debates are a lot of great and useful fun on our forum, but sometimes they are decidedly not. I have been disheartened by the direction this thread has once again been going just in the last week. But I have tried to relay the conversation back to you as accurately as I can. I do have personal opinions on this, which disqualify me as an objective journalist. But I hope we can refrain from too much speculation and show patience for this brilliant man and his dedicated staff, whether you are a fan or not. If my opinion means anything at all, I was very encouraged by everything they said to me and the spirit in which it was said. I did not sense the slightest hint of failure, evasiveness or confusion. On the contrary, I see a very bright future for the diagnosis and management of gluten sensitivity when these findings are finally and officially shared with the medical establishment and the world. I think we remain in very capable hands on this one.

Dr. Fine has chosen to answer our letter by the new FAQ posting on their site and the verbal conversation with me by phone with his staff member. So there will be no hardcopy coming. I feel our project accomplished its task. Dr. Fine specifically added the FAQ in direct response to our letter. If I had not called, they had also intended to eventually send an actual letter with the things I received by phone and have just shared with you. But the letter would have been quite delayed because of Dr. Fine's absence, so it is fortunate that we called. He and his staff are working hard and not ignoring us. Their tardiness with publishing is unfortunate, but understandable when considering their need for accuracy and the work load they are under.

I found it very interesting that the SCD type diet many on this forum have found to be extremely useful was mentioned in Dr. Fine's response as a possible direction for those of us who haven't improved on a gluten free diet alone. He also included another appeal for anyone who is still not well, to carefully re-examine their environment and what they are eating, taking as medications and supplements or cosmetically putting on their bodies. This remains a huge misunderstood area of needed exploration. The people who are participating on the new "super sensitive" threads on our forum can certainly identify with that advice and seem to be doing a great job of exploring those issues for themselves. And finally, it always remains possible that other health problems besides a gluten sensitivity alone could be the contributing factor to lack of success with a gluten free diet and should certainly be considered with your medical professional.

I want to thank all of you again for your participation. I hope that this information helps to renew confidence in Dr. Fine's research. We look forward to his success with publishing and continuing new discoveries. Although most of us on this forum are not medical professionals or scientists and may sometimes not quite have all the correct facts on some things, it's still exciting to know that many of our threads are right on target with the newest research and we can provide valuable service as a large, interested base with undeniably important personal experiences to share.

To read Dr. Fine's response, go to www.enterolab.com

Click on FAQ Gluten/Food Sensitivity

Click on the question, "What course should I take if a gluten-free diet does not relieve my symptoms completely?"

And for those of you who have never actually read all the FAQ's provided on the Enterolab site, you may find even more answers to some of your own personal questions about what they are doing. They are well worth reading.

[lbd]

Gentleheart,

I did not sign the letter because I wasn't worried about the lack of peer-reviewed research. Having a science background, I know the wheels of science move very slowly. However, I wanted to personally thank you for writing this letter, sending it off, and for following up so thoroughly. You and Enterolab's staff are to be congratulated for taking time out of your busy schedules to attend to this. Thank you so very much.

Laurie

[ravenwoodglass]

Gentleheart, Thanks so much for the update and the time and energy you have spent on this.