Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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! :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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! ;)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. RMJ
      - RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. Were any other antibody tests run?
    2. trents
      - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

      The practical takeaway: "For people who care about celiac disease, especially families who have children at higher risk, the findings highlight the importance of self-advocacy." It's the only parameter that the affected individual or their family members have control over. We need to learn to become "politely pushy" in order to get proper testing done when...
    3. Russ H
      - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility...
    4. Scott Adams
      - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

      This technology is currently years away, as it will need to go through an extensive FDA approval process.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,002
    • Most Online (within 30 mins)
      7,748
    Lsnel
    Newest Member
    Lsnel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      Positive biopsy

      By RMJ · Posted

      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal.  Were any other antibody tests run?  
    • Russ H
      Positive biopsy

      By Russ H · Posted

      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      Positive biopsy

      By Scott Adams · Posted

      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Help understand results

      By trents · Posted

      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Fruits & Veggies

      By Jordan Carlson · Posted

      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.