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Group Letter to Dr. Fine

Gentleheart

By Gentleheart
in Doctors

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted

Thank you, Gentleheart, for all the time you took in sending the letter, following up and reporting back to us. I appreciate it very much! :)

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  • Replies 152
  • Created
  • Last Reply
Gentleheart Enthusiast
Gentleheart
Posted
  • Author

You are all very kind and most welcome.

maile Newbie
maile
Posted

I've been following this thread with great interest and I want to add my thanks to gentleheart and all those involved with the letter :)

this obviously took an enormous amount of time and as a newbie I am grateful for everyone's commitment to this issue so we may all learn!

btw, gentleheart, I hope you write for a living!

mslee Apprentice
mslee
Posted

thanks so much for the update & your efforts!

good job, taking action & being proactive :)

climbmtwhitney Apprentice
climbmtwhitney
Posted

Gentleheart,

THANK YOU for being so AMAZING! :) I really appreciate all the time and energy you've spent on this.

Cheers,

Jill

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Thank you SO much, Gentleheart.

It all makes sense to me.

Perhaps someone could post a copy of what got added to the FAQ?

shayesmom Rookie
shayesmom
Posted

Thanks to Gentleheart for persisting and getting a handle on something that has evaded many! I am thankful that your efforts have paid off....not only for you, but for countless others who don't know where to turn and now may soon have another, more "recognized" avenue to pursue in their quest for wellness.

I think you also may have inspired Dr. Fine to put the finishing touches on his work. We owe you! ;)

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psawyer Proficient
psawyer
Posted
Perhaps someone could post a copy of what got added to the FAQ?

Gentleheart provided the information on how to find it. I have made it into a clickable link:

To read Dr. Fine's response, go to Open Original Shared Link

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?"

I don't think it would be appropriate to copy the material here. If Dr. Fine wishes to join our board and post it himself that would be different. But anyone here can click on the link and see the information on his site.

Open Original Shared Link

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Thanks, Peter!

Gentleheart Enthusiast
Gentleheart
Posted
  • Author

This was a group effort, everyone. Without all of you, a single letter from from one of us, no matter how earnest, might have just become one more in a stack of many. Even though we took a risk and were worried at times that our group letter might be misunderstood as aggressive or inappropriate, it fortunately seems to have fallen on good soil and helped us stand out and be noticed if nothing else. If our sincere little project ends up producing good fruit for all of us, then I am happy. :)

Judyin Philly Enthusiast
Judyin Philly
Posted

If our sincere little project ends up producing good fruit for all of us, then I am happy. :)

I couldn't agree more Gentleheart. You've done a great job and we owe you alot.

I'm thrilled with the outcome and the time it took for you to do this and esp the long follow up letter.

Judy

  • 2 weeks later...
ravenwoodglass Mentor
ravenwoodglass
Posted

Hi I recieved an email from Dr. Fine in part to tell me about the Annual Celiac Camp, wish I could go but anyway this was in the email and thought I would share it with you all. I of course am letting him include me. I had testing done 5 years after diagnosis.

"Research Publication Update from Dr. Fine

Hello my friends. I am in the final stages of writing a scientific publication describing to the medical and scientific communities how effective stool testing for diagnosing gluten sensitivity has been over the past 10 years that we have been doing it. No names are ever used for scientific publications, just result numbers. However, you have the right to refuse to have your numbers included among the many thousands of numbers used to calculate reported results (mainly how frequently a positive stool antigliadin antibody result is found in different groups of people depending on their associated diseases and symptoms). Those having their results included in the research tabulations will receive the abstract from this study by email just after it is published. If, however, you would like your results to be removed from the long list, simply reply to this email stating so.

I thank you warmly for your ongoing support of our public health programs. This research publication is an important step in spreading the scientific truth about this groundbreaking testing, which will, in turn, help many people in the future.

Thank you once again!"

Gentleheart Enthusiast
Gentleheart
Posted
  • Author

Wow. I don't want to appear overly optimistic here, but I would say this is a very, very good sign of wonderful things to come. Thanks for sharing, Ravenwoodglass! :)

I don't have an official medical diagnosis as a comparative, so I probably don't qualify to be included in the study. But I'd sure love to be a part of this. You are very fortunate.

I hate gluten Apprentice
I hate gluten
Posted

I did not read through all of this thread, but thought I could add to it. Once a letter is fully put together, why not have multiple people send the same letter daily, if you receive no response by a certain amount of time. Im sure it would get old and force a response at some point. just a thought

ravenwoodglass Mentor
ravenwoodglass
Posted
Wow. I don't want to appear overly optimistic here, but I would say this is a very, very good sign of wonderful things to come. Thanks for sharing, Ravenwoodglass! :)

I don't have an official medical diagnosis as a comparative, so I probably don't qualify to be included in the study. But I'd sure love to be a part of this. You are very fortunate.

I don't think he is only using those who have been diagnosed by blood and biopsy in the group. I think he is simply using the folks who he has had tested for antibodies with the stool panel. I could be wrong though. Because of this I am not sure I will be one he includes in the study because I didn't have him check for gluten as I had been firmly diagnosed 5 years before I was tested for casien and soy. Mostly I wanted to have my gene results because my DD had been told by a big whig doctor in Boston that she can't be celiac because she doesn't have the genes. I hope I am included though because my genes are oddball ones not usually found in caucasian US populations.

Gentleheart Enthusiast
Gentleheart
Posted
  • Author
I did not read through all of this thread, but thought I could add to it. Once a letter is fully put together, why not have multiple people send the same letter daily, if you receive no response by a certain amount of time. Im sure it would get old and force a response at some point. just a thought

Not to worry. If you read through some of the last few pages of this thread you will see that Dr. Fine did indeed answer us. :)

Gentleheart Enthusiast
Gentleheart
Posted
  • Author
I don't think he is only using those who have been diagnosed by blood and biopsy in the group. I think he is simply using the folks who he has had tested for antibodies with the stool panel. I could be wrong though. Because of this I am not sure I will be one he includes in the study because I didn't have him check for gluten as I had been firmly diagnosed 5 years before I was tested for casien and soy. Mostly I wanted to have my gene results because my DD had been told by a big whig doctor in Boston that she can't be celiac because she doesn't have the genes. I hope I am included though because my genes are oddball ones not usually found in caucasian US populations.

You are probably right. I got an email announcement like yours yesterday. I think everyone whose data would be useful in stating the case for the validity of stool testing for diagnosis of gluten sensitivity, will be included. I think genetics as well. So maybe all of us can say we had a part in this. I think the fact that they are obviously sending out this information to many or even all of their clients is a positive indication that he is really close now to completing and presenting this study. It's exciting!

ravenwoodglass Mentor
ravenwoodglass
Posted
I think the fact that they are obviously sending out this information to many or even all of their clients is a positive indication that he is really close now to completing this study. It's exciting!

Yes it is very exciting. I look forward to reading it. Think how many could be helped if diagnosis was easier and it could be done with people like myself that have non-GI related illnesses for years. The way testing is now so many fall through the cracks and so many lives are stunted by the effects of gluten and they won't be diagnosed in this country until if and when GI symptoms become severe.

Gentleheart Enthusiast
Gentleheart
Posted
  • Author
Yes it is very exciting. I look forward to reading it. Think how many could be helped if diagnosis was easier and it could be done with people like myself that have non-GI related illnesses for years. The way testing is now so many fall through the cracks and so many lives are stunted by the effects of gluten and they won't be diagnosed in this country until if and when GI symptoms become severe.

And the whole point for me has never been believing Dr. Fine. I have always believed his work to be valid. It just makes sense. My entire reason for wanting him to publish so badly, was so that doctors everywhere, even in little towns, will be brought up to speed on this thing and more people can benefit and actually have cooperation from their own family physician. It's really hard doing this all alone, especially when your recovery isn't simple or instantaneous. And we shouldn't have to drive halfway across the country just to get someone to listen to us. Like it or not, medicine is a system with rules. Strong, strict rules. Without publishing, my little hometown doctor just isn't going to risk stepping aside from standard of care. He just isn't. Publishing is like a big, signed permission slip for him to be out in the hallway during class. ;)

Lisa Mentor
Lisa
Posted

I am glad that things apear to be moving along with Dr. Fine's research. I've always been interested in the accuracy of his stool testing.

  • 4 months later...
Anna Newbie
Anna
Posted
I am glad that things apear to be moving along with Dr. Fine's research. I've always been interested in the accuracy of his stool testing.

FYI, after doing more research and spending much time writing and editing, Dr. Fine has completed his research paper and has submitted it for publication.

Yeah!

Lisa Mentor
Lisa
Posted
FYI, after doing more research and spending much time writing and editing, Dr. Fine has completed his research paper and has submitted it for publication.

Yeah!

And, you know this how?

Anna Newbie
Anna
Posted
And, you know this how?

Because I do work for them.

Before I posted, I did get permission from the lab to share the fact that he has completed the paper.

Lisa Mentor
Lisa
Posted

Ah, I thought there might have been a connection somewhere. Dr Fine and Enterolabs has been the frequent subject of discussion here, as you can tell. Many members here will be looking forward his published work as well as the peer review.

Welcome!

lbd Rookie
lbd
Posted
Because I do work for them.

Before I posted, I did get permission from the lab to share the fact that he has completed the paper.

That is wonderful news, Anna! I can't wait to read it! Do you know where it may ultimately appear? Please pass my congratulations and thanks to Dr. Fine. Because of his work, both my sister and I had the impetus we needed to pursue and benefit greatly from a gluten free diet, despite negative results from conventional testing. Hopefully, this will open up a new option to many and convince doctors that there are other testing options.

May I share this information on another gluten free forum which has several members that have benefitted from Dr. Fine's work?

Laurie

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