Group Letter to Dr. Fine

[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,

Being the ridiculous perfectionist that I am, I keep going back over the letter and making little grammatical corrections. Sorry about that. It's what I do. But one major addition I felt should be made, I have included in the very last sentence. Don't you all think we should be sure to alert Dr. Fine that his response will ultimately be posted on our forum? I would certainly want to know that if I were him. Hopefully he will believe us when we commit to including it exactly as he writes it. Maybe I'm getting too cautious. What do you think? I just don't want him to be surprised by anything and to know exactly what our intentions are. As a group, we want to create a valuable friend and even ally in Dr. Fine, not an enemy.

Leadmeastray88,

I didn't want to ignore your suggestion concerning the genetic testing question. I don't feel qualified to create a statement on that subject since I don't fully understand the technology. If other people feel it needs to be included as well, then I will need someone scientifically knowledgeable (perhaps you) to tutor me in how to write it accurately. Dr. Fine doesn't actually DO the genetic testing part at his own lab, but sends it away as I understand it. So maybe we wouldn't get much of an answer on that particular question.

Concerning adding our full names, I personally think it's best to just let each person do what they are comfortable with on that. Some will include their full names and others may only include their first names or initials or even their forum names (if that's legal here). I think the most important thing to do here with this letter is to show numbers (strength), show a great interest in what he is doing (sincerity and need) and stay gracious (non threatening). Dr. Fine is busy and he is a doctor. Some doctors like to answer questions and other hate it. Some have huge egos and some don't. We need to make this as easy for him as possible and give him incentive to respond by our sheer numbers and his vested interest in our opinion of him and his work.

[Rachel--24]

I agree that letting him know that we intend to post his response on the forum is important to mention. Good thinking!

[climbmtwhitney]

Wow! Super idea!

I would happily sign the letter. My whole family, my sister's family and my mom all tested thru Enterolab in addition to blood tests & biopsies for some.

Thanks to everyone who put the letter together.

--Sonya

[Judyin Philly]

yes thanks for all the time and effort that went into it.

Judy

[Joe G]

The letter looks great. Please add my name. I have been tested, and retested, by Enterolab.

Joe G

[Gentleheart]

We'll wait a couple more days, perhaps, for anyone to make any suggestions regarding the letter itself. Then I suppose we will have to decide how to share the names to get a list compiled to send along with the letter. Because privacy may certainly be an issue for some who want to include their full or first names, I will be happy to have anyone PM me accordingly. Anyone else who either doesn't care or who is just going to use their screen name could do a quick post here and I will notate them all as they come in. I am making a list of the ones who have already done so. At some point we will stop and get the letter out to Dr. Fine.

Dr. Fine just may want to know the name of the forum we are on, out of personal curiosity and to be able to monitor our promise to post exactly what he says. I wouldn't blame him. How do we go about asking Scott's permission to include the name of celiac.com? I want to do the right thing, here. And we certainly won't include it if he doesn't want us to.

But I think I've stated it before in a past post. If you were on the Enterolab staff and knew about celiac.com, wouldn't you be checking out the site once in awhile to get a feel for the celiac community? I sure would. It just seems like good research business to me. So maybe they already do that. If they don't, then maybe we will influence them to begin.

[GlutenWrangler]

Great job on the letter. Please add my name. Thanks!

-Brian Welch

[GlutenWrangler]

By the way...I'll make a post about it in the Moderators Only forum to see whether or not Scott is on board. I'll let you know as soon as I find out.

-Brian

[WW340]

You can add my name to your list. I did not have my testing done by enterolab, but I think this is an important issue that comes up frequently.

I think it is great that some of the members of this board have come together to DO something. You're attempting to resolve a very controversial issue, not by trying to argue in a thread, but by actually getting to the heart of the matter and going to the source. I applaud you.

I hope you are getting more pm's than responses on this thread. Unfortunately, you will find a lot of people would rather just argue in a thread than make the effort to resolve a problem.

Jan

[Judyin Philly]

Jan, great post.

I so agree.

Let's be proactive and make a difference rather than endless chatter.

I also hope people are PM'ing Gentleheart to add names to the list.

Maybe she can give us an up date of how many names she's gotten so far.

Let's hope alot of folks will add their names.......however they choose to enter them.

Judy

[Gentleheart]

Hello everyone. I've been stuck in 'outline mode' all day long and didn't even know I was lost! I couldn't see any of the responses for this thread and thought something was wrong with the board. Fortunately some very nice people on the board got me back on track. I warned you all that computers and I only marginally get along!

Several people have PM'd me with their wishes to be included. Some are using full names, some are using first names and some are using board names. So please feel comfortable with this everyone. Whatever you want is fine.

I have about 15 people including myself. Not bad, but not a whole lot either, considering the magnitude of this forum.

In case there are people who are not noticing this post for one reason or another, but who would probably like to be included, does anyone have an idea how to give a quick alert here so we can wrap this up? There's no need to prolong it if we have everyone included who is interested.

I am being very careful with everyone's wishes and privacy. I want to 'sign' this letter exactly as you all are telling me. So I have a few people I need to make sure of. You can answer me with a PM if you don't want to do so on the board.

Momma Goose, do you wish to be included? If so, how would you like to sign?

Mike, do you wish to be included? If so, how would you like to sign?

WW340, how would you like to sign?

Those of you who have already posted in this thread with a desire to be included, I have assumed you want me to use your board name unless you've told me otherwise. Anyone feel free to correct me and clarify anything you wish.

Thanks for all the kind words. I think that Dr. Fine has a great opportunity here to gain alot of support and maybe even more data for his research, if he responds to us in a thoughtful manner. And maybe some of us will get a few overdue answers to our personal health questions.

[Judyin Philly]

Gentleheart

I'll post this link on the 'sillie' and "OMg" Theads as it might reach the most people

Maybe we can get some more names.

Judy

[Lisa]

Momma Goose, do you wish to be included? If so, how would you like to sign?

I was diagnosed through a biopsy before I knew anything about Celiac Disease. I have no personal experience with Enterolabs.

I think it's a great letter! As a common discussion here, I look forward to Dr. Fine's response.

[Gentleheart]

Gentleheart

I'll post this link on the 'sillie' and "OMg" Theads as it might reach the most people

Maybe we can get some more names.

Judy

Thank you!

[JNBunnie1]

I was diagnosed through a biopsy before I knew anything about Celiac Disease. I have no personal experience with Enterolabs.

I think it's a great letter! As a common discussion here, I look forward to Dr. Fine's response.

I really don't mean to sound contentious, but I couldn't actually figure out from this whether or not you were interested in being included. I'm guessing no.

I would like to be included, Gentleheart. And I think the letter you wrote is perfect. Sign me as JnBunnie1, thanks.

[Lisa]

I think I answered Gentleheart's question.

[Nancym]

There are web sites out there where you can create petitions, you might look into utilizing one.

[Fiddle-Faddle]

I think I answered Gentleheart's question.

You know, MommaG, I couldn't figure it out, either. It sounds like you are only interested in observing, not participating? But I had to read a lot into it to come up with that conclusion, so I'm assuming (not a good thing!).

Of course, maybe you meant that you answered her question in a private pm?

I have no experience with Enterolab, either, but feel that it's appropriate to add my signature to the letter, as the specific questions in the letter (so beautifully drafted by Gentleheart) are from all of us who would like answers those questions, not just from those who have had Enterolab experience.

Depending on the answer, I would either continue to recommend Enterolab as one reasonable option for diagnosis, or advise people to stay away from it.

I also think that the more of us who sign the letter, the more impact the letter might have.

[jerseyangel]

I think that it's fine for anyone who wants to sign the letter to do so. Is it really necessary to comment on whether or not someone else chooses to? Lisa answered Gentleheart's question, and I'm sure if Gentleheart had any questions about that, she would have asked her, and hopefully, in private. I don't think it's fair to discuss Lisa's intentions out here in the open.

[Gentleheart]

Please don't be concerned everyone. I am paying close attention to exactly what people are saying and not saying. Unless they specifically say they wish to be included and give me the name they wish to use, I am not including them. I am committed to keeping this little project simple and accurate in every way. Using an outside petition-producing website is probably beyond my personal computer ability and more complicated than I wish to get. But thank you for the suggestion, NancyM. I always appreciate people's interest and constructive input.

My simple purpose in spearheading this is to attempt to get a few valuable answers from Dr. Fine concerning the many controversies that swirl around him and his research on this board. I think that could help a lot of people make more educated decisions concerning their gluten related health issues, which is one of the purposes of this forum. Believing that there is often power in numbers, I thought it might be helpful if we banded together. That's the project. No more, no less.

I have compiled 18 names including me. I will wait one more day and then we will get this show on the road.

[mftnchn]

I missed this whole thread until Judy posted a link in another thread that didn't work. I found it by googling....

This is a busy time of year, the board was down over the weekend. I know I have been swamped and not reading so much. In addition, I was avoiding this type of thread due to not wanting to get into any controversy as I found it wasn't good for me.

All that to say, maybe a little more patience before sending????

It is a good letter, and I am willing to sign. I'll PM my name if I can get it to go. I have been having trouble with posting lately, get errors. Otherwise, just use my screen name.

[AndreaB]

Please include my name. Just use my screen name.

[Fiddle-Faddle]

I think that it's fine for anyone who wants to sign the letter to do so. Is it really necessary to comment on whether or not someone else chooses to? Lisa answered Gentleheart's question, and I'm sure if Gentleheart had any questions about that, she would have asked her, and hopefully, in private. I don't think it's fair to discuss Lisa's intentions out here in the open.

Patti, with all due respect, I don't think that I was out of bounds for commenting on Lisa's post. I agree with you that it's fine for anyone who wants to sign to do so, and I also think that it's fine for anyone who does NOT want to sign to NOT do so.

Since it was implied that someone felt that they don't have the right to sign because they never used Enterolab, I felt it necessary to mention that I believe it IS appropriate to sign even without having used Enterolab, and I tried to clearly explain why I felt so.

I invested quite a bit of time writing the first draft of the letter (which Gentleheart improved enormously). I'm not going to make a major issue out of it and beg for people to sign the improved version; however, it seemed to me that the implication in Lisa's post was that ONLY people who used Enterolab had the right to sign. It's certainly possible that I was reading more into that statement than was originally intended, but it's also possible that others reading might feel that they had no right to sign.

That's why I felt it was necessary to comment on the post.

I understand that you don't want to see things escalating into a battle, but I honestly don't think a battle was forming. I don't believe we should make each other feel like we're walking on eggshells around here, either! I really think it's okay if we all disagree with each other from time to time, and even okay to post it! Most of us respect each other enough to be able to handle a little disagreement here and there.

Lisa is free to disagree with me, she is free to not sign, and I respect her either way.

[Lisa]

it seemed to me that the implication in Lisa's post was that ONLY people who used Enterolab had the right to sign. .

Fiddle-Faddle,

It seems that you are indeed reading too much into my post. I believe Gentleheart addressed ME personally and inquire as to MY desire to sign MY name the the Dr. Fine letter.

I declined politely. What more is there! Find another issue!

[Gentleheart]

I missed this whole thread until Judy posted a link in another thread that didn't work. I found it by googling....

This is a busy time of year, the board was down over the weekend. I know I have been swamped and not reading so much. In addition, I was avoiding this type of thread due to not wanting to get into any controversy as I found it wasn't good for me.

All that to say, maybe a little more patience before sending????

It is a good letter, and I am willing to sign. I'll PM my name if I can get it to go. I have been having trouble with posting lately, get errors. Otherwise, just use my screen name.

I'm not in any particular hurry. I'm sorry if I gave that impression. But precisely because it is Christmastime and everyone is so busy, I thought it would be good to wrap this up and get it sent as soon as possible. If people are still wanting to sign, however, then I am most happy to wait awhile longer. I just thought I should set some kind of 'deadline' to get this thing accomplished and not drag it on too long. Don't worry. If I still have names coming in, I will gladly wait.

And I will repeat it again. There is NO pressure here to sign. There never was. You can sign if you want to and not if you don't. It's OK. You can sign even if you haven't used Enterolab's services. You can sign even if you LOVED Enterolab's services. That's why I kept the letter kind and non confrontational. We are just asking Dr. Fine some clarifying questions about his research and business like any good consumer would do. We aren't MAD at him. We are INTERESTED in him. There's a big difference. Stay focused, group.