Group Letter to Dr. Fine

[Gentleheart]

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

Why don't some of us try to work together for some answers from Enterolab in a very friendly way by kindly contacting their website email with appeals for clarity from Dr. Fine and his staff? Perhaps we could even encourage them to take a personal look at this thread and others like it on celiac.com to experience all the passion.

I would appeal to anyone emailing, however, to PLEASE, PLEASE remain non inflammatory. We may find Dr. Fine to truly be a loving and caring professional, eccentric or not. After all, a lot of us DQ 1's on here know all about eccentric, don't we? We certainly don't want to alienate or discourage him and shoot ourselves in the foot. We would all just like him to clue us in on the condition of his research and his vision for the future if he will. We ARE his customer base, after all.

If we just get more vague answers or none at all, then at least we can say we tried and come to our own conclusions after that. It might produce a nice, positive ending for this thread. Bad idea??

[Fiddle-Faddle]

Gentleheart, that's a great, productive idea! Are you thinking of several of us emailing, or one letter signed by many?

[Gentleheart]

Gentleheart, that's a great, productive idea! Are you thinking of several of us emailing, or one letter signed by many?

I honestly don't know. I'm not proficient enough on the internet to be in charge of a group email. But I'm sure many of you here would know how to do that. But it all depends upon which way would best get Enterolab's attention. We also don't want to hurt them in any way by blanketing their email system with too many emails or something like that. Forgive my ignorance of how that stuff all works. It would just be very good business on their part to listen to us and give us some answers.

But here we are passionately discussing all of this important stuff and they may know nothing about it. How silly it is to not at least make an appeal to the one person who can give us all the answers we seek, before we all make any final conclusions and put this thread to rest.

[darlindeb25]

It's a great idea Gentleheart!

[Gentleheart]

We need some feedback from those of you who have interest in this subject.

1. Do you think we should all just individually send short appropriate emails to Enterolab's site?

OR

2. Do you think a longer well written common email somehow signed by us all would be better?

If we all individually send short emails, then the logistics are easier on our end. And it might look pretty impressive when they get them. But it also might take their staff a lot of time to individually answer them all as well. We do want to be considerate.

If we send it as a lengthier group email, then the difficulty rests more with us all agreeing on what to say. Because of so many differences of opinion, we would all have to remain really "grown up" about this. I vote to keep it friendly, simple and to the point, whatever we decide. We are more likely to get a good answer that way. But it also has to be specific enough so we don't just get another one of those useless canned answers.

Let's hear from you wise people out there.

[sbj]

Let's hear from you wise people out there.

Perhaps some wise people will respond soon - in the meantime ...

I vote for a single letter, not email, with all of us adding our names as signatories. I would suggest that it NOT be affiliated with this site in any way (unless the site proprietor agrees to be involved) and that it be short and sweet - see the first post that started this crazy train. A bunch of short emails sent by various people, I think, encourages hanky panky and won't result in any sort of response we can validate as authentic.

There is also the question of certifying the legitimacy of the reply ... How will any of us know whether the response is real?

Perhaps we should begin by establishing what we hope to accomplish?

[Fiddle-Faddle]

I like the idea of a single letter, but I'll go along with individual emails if that's what the majority would like.

[Gentleheart]

I would prefer a group letter as well.

My personal objective would be to try to find out anything new he is willing to say concerning the publishing and direction of his research using stool samples to detect gluten, casein, egg, soy and yeast sensitivities, evidences of damage to the small intestine and subsequent malabsorption of fat as well as genetic issues relating to gluten. I think that covers most everything they offer on the site. I realize that many of us have already asked him, but the whole point is to get his attention better and perhaps get him to be more candid just because of our numbers. The educational information on his site should be constantly updated and changing in my opinion. If progress is being made, we would all love to hear about it and the silence is odd. It might honestly be because they are just plain too busy. But it is something I have personally noticed nonetheless.

I'm puzzled as to why we wouldn't want to mention this board or how we are all connected with each other by our discussions here. Like it or not, we are a great big free word-of-mouth advertising source for Enterolab. Even if he has no interest in the money being made and may be completely benevolent in his attitude, our board still introduces searching people to his lab on a daily basis merely by our discussions. Research can't happen without people using his services. So we are very valuable. I thought that was our leverage, if we have any. Perhaps there is something I don't understand. Perhaps there are rules. Please educate me.

I would particularly like to mention those of us who have followed the gluten free ( and in some cases casein, egg, yeast and soy free as well) lifestyle meticulously and yet do not see our health changing on or off the diet. I would like to know what he might specifically say about that uncomfortable fact (besides just telling us all that we must be getting gluten somewhere). That deviation test result has to be on his own list of unanswered research questions.

I would like to include the frustration we have that, except for some exceptions, most doctors and even other notable peer researchers will not accept any of his research. I would like to hear what he might be willing to say about that. He needs to tell us WHY we might choose to believe and trust him and not them.

He needs to know how many of us have based our decisions to follow the diet soley on his tests. Many of you have pointed out that doing so was not fair to him or perhaps even wise. You might be absolutely right, but some of us innocently did it anyway before we knew better and here we are. He needs to know how much we would appreciate a word of encouragement on why he thinks we did the right thing or even advice on where to go from here.

I've never heard Dr. Fine speak. Maybe he provides all of these encouragements and answers in his talks already. I wonder why none of those talks are on tape or in book form for those of us who live in the middle of nowhere and can't get to those seminars.

I have surmised that Dr. Fine believes gluten is probably bad for everyone. He follows a strict, unusual diet himself and personally endorses very alternative health modalities as evidenced by his annual convention topics. But the research procedures he has set up on this subject appear to be reasonably solid/normal/scientific and it is only that research that interests me.

He's obviously not going to share with us if he's having trouble. I know that. He wouldn't tell us anything that would jeopardize his work. So maybe this is an exercise in futility. If you think so, then I will gladly withdraw my suggestion. I realize that he maybe has said all he is going to say.

Only 4 of us have shown interest in doing this so far. So maybe there really aren't very many of you who share these questions. I quickly jumped in here one last time just because I saw some passion about it on this thread and thought we could maybe get some answers before the thread died a natural death. If there is no need or interest, then I will cheerfully move on. We are all so very busy and there is no reason to use precious time during this wonderful Christmas season pursuing something unnecessary. Please let us know your thoughts.

[Fiddle-Faddle]

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

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

[psawyer]

Here is a link to the thread from which this one was split.

[Fiddle-Faddle]

Okay, folks--let's play around with this letter, and see if we can tweak it to be something we all feel comfortable signing!

Dear Dr. Fine,

We are several people with diagnoses of celiac disease, gluten intolerance, and possibly further issues, and we are all members of the glutenfreeforum at www.celiac.com.

Many people here have been diagnosed by Enterolab, and, while some have had wonderful results from the gluten-free diet, others have had no improvement whatsoever from symptoms, despite rigidly adhering to the diet.

A few others have been diagnosed as gluten-intolerant by Enterolab, despite being symptom-free, and in spite of adopting a rigid gluten-free diet, follow-up tests from Enterolab showed NO improvement.

This has been the topic of heated debate amongst us, as you can imagine.

We did all manage to agree on one thing--that we needed to communicate with YOU for clarification and further information.

Perhaps our most important question is this: if there conditions (such as Lyme Disease and other intestinal bacterial infections) that can cause false positives, then isn't it possible that Enterolab's test is inaccurate specifically for those people with non-gluten-induced positive results?

It is a major concern, as some people have delayed looking for other causes, as they were sure that gluten intolerance was their one and only problem, not realizing that other conditions can CAUSE gluten intolerance.

Another question that has often come up on this board is, when will your results be published, and what is taking so long? Since so many people on this board are relying on Enterolab, and are coming up against their own doctors and insurance companies who call Enterolab's results "invalid," we do feel that we, the consumers, have the right to know what's going on, since so many of us have been told for so long that "Dr. Fine is about to publish!"

And finally, a comment, not a question: A couple of members here contacted you when they noticed absolutely no improvement of their symptoms while ABSOLUTELY gluten-free for many months. You apparently told them that they must not have been adhering to the diet.

Surely you realize that this is similar to their primary care practitioner's claiming that their symptoms are in their head, or that they need psychiatric care, or that they are perfectly healthy? PLEASE don't turn the blame on the patient without knowing the details. Otherwise, you run the risk of manipulating the data--just like the pharmaceutical companies we all despise.

Sincerely, etc.

Blah

Blah

Blah

[Lisa]

Just a little note ....I think if you choose to use www.celiac.com in your letter, it might be best to get a "release" from Scott Adams, owner of the site. He has proprietary rights to the site.

[Fiddle-Faddle]

Absolutely! I just don't want to bother him with this letter unless we come up with something we all agree with. And I was careful to say that we are members of the forum, not representatives of celiac.com.

[Gentleheart]

Great start, Fiddle Faddle!

Please forgive me if I'm changing things way too much here. But I had been tossing around some ideas too and will share them. I tried to incorporate most of what you said with my thoughts. See what you think.

Dear Dr. Fine,

We are a large group of people who participate on a notable internet gluten free forum. You are well known on our forum and we would like to sincerely thank you and your staff for your valuable work and dedication concerning this disease.

Many people here have tested positive through Enterolab. But while most have had good results by choosing the gluten free diet, a significant number have unfortunately shown little or no visible improvement whatsoever. Some have even done follow-up testing with Enterolab, clinically proving their lack of progress. This has been the topic of heated debate amongst us, as you might imagine.

A few members did contact you regarding their disappointing lack of results and were repeatedly encouraged to investigate possible hidden sources of gluten. Having been absolutely meticulous in their avoidance, they were highly confident that lack of compliance or cross contamination was NOT the problem. Unfortunately, none of them have been able to get any further answers to their dilemma.

Living a gluten free lifestyle is challenging. If additional sensitivities are added like casein, eggs, soy or yeast, it can be even more life altering. For those on this forum who have received near miraculous improvements in their health as a direct result of the gluten free diet, it is a small price to pay indeed. But for those who have not, the validity of their "diagnosis" becomes a very important topic. On the one hand they have great respect for you and your research, while on the other they remain ill and wonder whether to keep going or to seek answers elsewhere. Some without symptoms at all, wonder why they would want to take on the difficult gluten free lifestyle based soley on an Enterolab stool test when it is not yet accepted as valid within mainstream medicine.

A large part of the skepticism seen on our forum centers around your repeated unfullfilled promises to publish. The scientists among us have educated us about the difficulties of publishing, even suggesting that perhaps you have been hampered in some way because of professional peer biases. Some members are disappointed enough to see your continuous lack of publishing and broken promises as a possible indication of research failure. But many of us still retain hope that there must be a perfectly good explanation and that your research still holds great promise for all of us. We would love to hear that explanation.

Some members have pointed out that conditions such as Lyme Disease or intestinal bacterial infections might be able to cause false positives. It leaves them wondering if stool testing results for those particular people could therefore be inaccurate and misleading, causing some of the confusion.

Such people may delay looking for those other conditions, believing that gluten was the origin of their problems rather than just a symptom. There is obvious concern that they might suffer even greater damage from potential delay of appropriate treatment as a result.

One thing we did all manage to agree on is that we needed to communicate with YOU for clarification and further education. We will greatly appreciate thoughtful answers to our questions and many concerns. We know how busy you must be. But we are also the very ones who will directly benefit from all of your work and tell others of our success or failure with Enterolab. We want to believe in what you are doing, but we also need to individually know and be encouraged that we are on the right path.

We thank you so very much for your time and eagerly look forward to your response, which we intend to faithfully post on our forum exactly as you provide it to us.

Respectfully,

[Fiddle-Faddle]

Gentleheart, that's fabulous. That's the letter I was TRYING to write, but I was too tired to make it come out right.

Thank you!

I wonder if we ought to add one thing:

"Some members have pointed out that conditions such as Lyme Disease or intestinal bacterial infections might be able to cause false positives. It leaves them wondering if stool testing results for those particular people could therefore be inaccurate and misleading, causing some of the confusion.

People with those conditions have also delayed looking for other conditions, believing that gluten was the origin of their problems, rather than a symptom. We are concerned that such people might suffer greater damage due to potential delay of treatment for those infections."

Feel free to work your editorial magic on that!

[Gentleheart]

Thanks Fiddle Faddle. That's a great addition. I have added it to the original post.

I'm still wondering just how many people on the board actually have interest in doing this. I'm not seeing much action. I realize that they may just be reading and waiting, but the letter won't be as effective if we don't have a sizable amount of accompanying names.

By the way, I have always intended that these signatures be only first names. This project certainly doesn't need to be intimidating for anyone's privacy. Dr. Fine will just have to believe that we are real people. I also don't see a reason to include or specifically mention celiac.com either unless we actually do want him to log on here and take a look. Maybe we don't want him to!

But I still do not have a clue how to include the names except to literally take them down manually as they come in here as separate posts and then add them to the actual typed letter as a list of first names. I do think this needs to be an actual letter and not just an email. Don't you? Do businesses nowadays always even read their emails or is there a danger of it just being deleted? Since they probably seldom get letters, it might be better noticed. I don't know.

Well, I admit to ignorance on the technical front. Someone computer saavy needs to help us. Unless that's already you, Fiddle Faddle.

I'm open to any and all suggestions. And please anyone correct us on the letter in general if you think something isn't right or needs to be added, so we can discuss it.

[mushroom]

I think that the letter has the right tone. But I think it should contain the signatures of only those who have had a connection/experience with Enterolab. While I would be interested in his response I don't think it would be appropriate for me to sign it. I personally feel that only those who state they want to sign it should have their names on it.

[Gentleheart]

I think that the letter has the right tone. But I think it should contain the signatures of only those who have had a connection/experience with Enterolab. While I would be interested in his response I don't think it would be appropriate for me to sign it. I personally feel that only those who state they want to sign it should have their names on it.

Absolutely, Mushroom. In my attempt to get some feedback from interested people here, I don't want anyone to misunderstand. Dr. Fine's response, if he chooses to give us one, can inform and benefit all of us. But only those who want to sign need do so. And again, I don't think anything but first names or even pseudo-names will be necessary in my opinion. This is certainly not an official document of any kind and Dr. Fine will just have to believe that we are really a group of people. We don't have to make this complicated. No pressure guys. Only those who have personal interest and experience and who want to be included. Let's see how many of us there are.

[Judyin Philly]

I'm interested and reading along

I like the letter

I agree, I think those who actually had the testing done with this lab would add validity and sincerity to it.

If the original person who actually sends this letter off includes a specific return address etc. that would be enough.

I guess we could send PM's to Gentleheart once the letter is finalized to give permission to add our names. If we put our name as it was listed on our testing results, they could see it was valid.

Just a thought. This might get him to see how interested we are in his answers as we were users of his testing product.

Judy

[leadmeastray88]

I would ABSOLUTELY sign this letter.

Although most of my problems have been resolved by a gluten-free diet, I am curious to know the answers to the questions you mentioned in your letter. I also want to provide support for anyone whose problems did not resolve on a gluten-free diet as prescribed by Dr. Fine.

Perhaps you should add that his genetic testing can be inaccurate - as they only test for the beta chain. AKA Don't tell me that my DQ2*0202 gene can't be a Celiac one if you don't know the alpha part!

[Fiddle-Faddle]

I don't think the signatures should be limited to those who have had Enterolab testing, as many of us have been recommending Enterolab to other board members even though we didn't need Enterolab ourselves.

I would be happy to sign my full name.

[jerseyangel]

I had my genes done through Enterolab the first time--I'd also be glad to sign your letter. I've love to hear if/when he responds

[Judyin Philly]

I don't think the signatures should be limited to those who have had Enterolab testing, as many of us have been recommending Enterolab to other board members even though we didn't need Enterolab ourselves.

I would be happy to sign my full name.

Ok, do you think we could have a section of those tested.....those who have an interest in the topics

or are we being too picky here?

I don't really care. I just tossed my idea into the mix. I'll sign my whole name. Guess it can be left up to those who sign.

Judy

[Rachel--24]

Gentleheart, I think the letter is outstanding....very well written. You can certainly add my name to the list. I have had all of the testing.

I'm not sure that its absolutely necessary that only those who have had experience with Enterolab sign. I think that many who have not tested have the same questions and would be interested in any response from Dr. Fine. Afterall, many of them are his "potential" customers.

Maybe others will offer more input as far as that goes.....but absolutely, I do want to have my name on the list.

[Judyin Philly]

Gentleheart, I think the letter is outstanding....very well written. You can certainly add my name to the list. I have had all of the testing.

I'm not sure that its absolutely necessary that only those who have had experience with Enterolab sign. I think that many who have not tested have the same questions and would be interested in any response from Dr. Fine. Afterall, many of them are his "potential" customers.

Maybe others will offer more input as far as that goes.....but absolutely, I do want to have my name on the list.

It is a outstanding letter Gentleheart!

Forget about my suggestion. Let's not make it complicated and it's info we all want and need.

I'll go with the group decision.

Judy