Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Group Letter to Dr. Fine
0

153 posts in this topic

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!

I certainly apologize for reading too much into your post.

As for your "answer," apparently what you meant as a polite way to decline confused both me and jnbunnie. Neither one of us were really sure if you meant to decline or if you felt that you weren't allowed to sign or if you even meant to answer.

I'm only trying to clarify my own comments. Why would you order me to find me another issue?

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm pretty sure that who signs is no one else's business except those who choose to sign it. If this type of conversation continues, those posts will be set to invisible.

0

Share this post


Link to post
Share on other sites

May I humbly step in here and make a heartfelt request. I would like to keep this thread precisely on target. There may yet be a few people who wish to come onboard and sign our letter to Dr. Fine before we send it in the next couple of days. But like me, they are 'gentlehearts' and may not do especially well with controversy. Many of us are very sick and naturally avoid stressful environments. Let's make sure this thread isn't one of those difficult places to be. Can we please lay aside the misunderstandings long enough to accomplish our task? I will be most grateful to all of you if you would do that for the sake of our project. Thanks everyone. I really appreciate it :)

0

Share this post


Link to post
Share on other sites
May I humbly step in here and make a heartfelt request. I would like to keep this thread precisely on target. There may yet be a few people who wish to come onboard and sign our letter to Dr. Fine before we send it in the next couple of days. But like me, they are 'gentlehearts' and may not do especially well with controversy. Many of us are very sick and naturally avoid stressful environments. Let's make sure this thread isn't one of those difficult places to be. Can we please lay aside the misunderstandings long enough to accomplish our task? I will be most grateful to all of you if you would do that for the sake of our project. Thanks everyone. I really appreciate it :)

I agree wholeheartedly. Perhaps we could agree that if we want our comments private, we will refrain from posting them publicly? I think that would help stem a great deal of controversy.

I really wasn't trying to be contentious, I'm a walking dictionary and I get confused when something doesn't make sense, is all. Asking for clarification gets me in trouble regularly. I'll shut up now.

0

Share this post


Link to post
Share on other sites
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 think this is a good idea. I'll try to make mention of this effort wherever I can. I think a goal date would be a good idea, Gentleheart, I know you need some answers. This is your baby, you feel free to set the date whenever you like.

0

Share this post


Link to post
Share on other sites




I think I would like to make the end of the day on Friday as our stopping point for this project. I hope that doesn't rush anyone. I think it's time to get the letter sent. Many of you have PM'd me and been so kind in your responses. Thank you. We now have 21 people. I certainly hope to still get more, but if not, I'm most grateful for what we have. I think a couple dozen names will look very nice on the letter. I will type it up on some high quality ivory bond and get it sent right out. Hopefully he gets few actual letters and will maybe notice ours. How long it will take for him to respond is anybody's guess. We'll see. I hope he chooses to use this wonderful opportunity to communicate, wisely.

If this thread falls off the screen from inactivity over the next two days, I may bump it a couple of times to keep it current. I hope no one will mind. :)

I think I will include the final draft of the letter here. My ability to edit the original posted one is gone. So I will type it over on this post. Some people have given suggestions that I thought were very useful and they have been added. Gluten Wrangler offered to say something to Scott about mentioning celiac.com by name in our letter. But since we haven't heard anything, I currently plan to NOT do so.

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. You are truly making a difference.

We are sending this letter to you as an independent group and do not officially represent the forum in any capacity. But the administrator of the forum has graciously allowed us to share its name with you. Perhaps you and your staff may want to explore our interesting gluten community for yourselves. It is www.celiac.com.

Many people here have tested positive through Enterolab's various tests. But while most have had outstanding 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 as the most likely explanation. Having been absolutely meticulous in their avoidance, they were highly confident that lack of compliance or cross contamination would NOT seem to be the problem. But 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, often isolating gluten free lifestyle based solely on an Enterolab stool test when it is not yet accepted as valid within mainstream medicine or by their own personal physicians.

A large part of the skepticism seen on our forum centers around your repeated unfullfilled promises to publish in a peer-reviewed periodic scientific journal. 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 possible indication of research failure. But many of us still retain a firm 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 agree on is that we needed to communicate with YOU for clarification, further education and possible updates on your research progress. 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, care greatly about your research and will openly 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,

0

Share this post


Link to post
Share on other sites

It looks great, Gentleheart! Thank you so much for all you've done.

Do you think it would be a bad idea to send it by registered mail, so that HE has to sign to get it? That way, it wouldn't end up on someone else's desk, lost amidst junk mail, etc. I think it only costs a few dollars to do so, and I can certainly send you some $ in the mail if you think it's a good idea.

0

Share this post


Link to post
Share on other sites
It looks great, Gentleheart! Thank you so much for all you've done.

Do you think it would be a bad idea to send it by registered mail, so that HE has to sign to get it? That way, it wouldn't end up on someone else's desk, lost amidst junk mail, etc. I think it only costs a few dollars to do so, and I can certainly send you some $ in the mail if you think it's a good idea.

Oh, I think that is a great idea! I will be happy to do that at my expense. Thank you for the kind offer to help.

We now have 22 names.

0

Share this post


Link to post
Share on other sites
Oh, I think that is a great idea! I will be happy to do that at my expense. Thank you for the kind offer to help.

We now have 22 names.

I forgot to say how remarkably impressed I am by your letter. It's a fabulous piece of writing.

0

Share this post


Link to post
Share on other sites

The letter is very well written. Thank you for your efforts, Gentleheart!

JoAnn

0

Share this post


Link to post
Share on other sites

Thanks for all the kind words, everyone. We now have 25 names. :)

0

Share this post


Link to post
Share on other sites

Great Job! Thanks for organizing this!

I have been wanting to order some tests but $ is tight & am a little uneasy about jumping in just yet.

i will pm you my name :)

0

Share this post


Link to post
Share on other sites

BUMP........

Hello all. This is the last day for you to be added to our list of names on the letter to Dr. Fine. So far we have 27.

You may post on here or you may PM me privately. And remember, you do NOT have to use your full name if you would rather not. We are accepting first names, last names, initials, full names and board names.

:)

0

Share this post


Link to post
Share on other sites

Just wanted to say thanks again for all the work you've done.

I'm glad your wrapping it up.

I'm sure you'll be happy to get it sent off. :)

You sure can be proud of yourself for a job well done.

Thanks from all of us.

Judy

0

Share this post


Link to post
Share on other sites

You're most welcome. It's been fun.

Now we will really see if this was a good idea or not when we receive his response. :D

0

Share this post


Link to post
Share on other sites

I have good news!

Scott has replied to our request to include the name of the forum.

He has graciously agreed. :)

I think this could help make Dr. Fine much more comfortable with answering us.

Please take note of the paragraph I added near the beginning of our letter. It is not too late to critique it. If you have any further constructive suggestions, please feel free to let me know.

We're about ready to wrap this up. B)

0

Share this post


Link to post
Share on other sites
Scott has replied to our request to include the name of the forum. He has graciously agreed. :)

I think this could help make Dr. Fine much more comfortable with answering us.

Please take note of the paragraph I added near the beginning of our letter. It is not too late to critique it. If you have any further constructive suggestions, please feel free to let me know.

Hi Again

I want to thank you for letting us know that Scott approved adding our forum name. Thanks Scott. I think this might encourage them to take a look at our site too.

I think the paragraph you added is terrific, just like the letter.

I will look forward to reading his response, as I am most hopeful that he will send a thoughtful reply.

Judy

0

Share this post


Link to post
Share on other sites

Well, I think we'll call an 'official' end to our little project. We got 27 names. That will look great on the letter.

If anyone posts on here or PM's me by tomorrow or even the next day, I will certainly still add them. I plan to actually type the letter on Monday and send it.

I want to thank everyone for staying on target and getting this accomplished. We are a passionate bunch and I know it is hard sometimes to focus and follow through when you have strong feelings about things. But I'm so proud of everyone for getting the job done!

I want to thank all of you who gave constructive ideas for the letter. I especially want to thank Fiddle Faddle for giving us the original outline for the letter, which was enormously helpful. I also want to thank those who served as great cheerleaders throughout the entire process. And all of us want to thank Scott, I'm sure, for allowing us to mention celiac.com by name.

When I get a reply, you all will be the first to know. ;)

Merry Christmas! :)

0

Share this post


Link to post
Share on other sites

Thank you, Gentleheart, and all who were involved. Great job.

0

Share this post


Link to post
Share on other sites

I'll be looking forward to the reply.

Thanks to all who helped with this.

0

Share this post


Link to post
Share on other sites
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!

I'm good with it, but I have a question, as a late entry in this, sorry. Are you asking regarding JUST the stool test?

0

Share this post


Link to post
Share on other sites
I'm good with it, but I have a question, as a late entry in this, sorry. Are you asking regarding JUST the stool test?

Hi, Other than the swab genetics test which Dr. Fine sends away to another lab, I was not aware that he did anything BUT stool tests. Did I misunderstand your question?

0

Share this post


Link to post
Share on other sites
Hi, Other than the swab genetics test which Dr. Fine sends away to another lab, I was not aware that he did anything BUT stool tests. Did I misunderstand your question?

Right. I remember now that Red Cross did the gene test, I wondered why because I thought they were going to do it. Sorry. So it is the stool tests only that you are talking about. I understand now.

Thanks. Amber

0

Share this post


Link to post
Share on other sites
Right. I remember now that Red Cross did the gene test, I wondered why because I thought they were going to do it. Sorry. So it is the stool tests only that you are talking about. I understand now.

Thanks. Amber

No problem. :)

Although there is still a HUGE amount we don't know about the genetics of this disease, I think most experts at least somewhat agree on the two main ones, DQ2 and 8. And depending upon who you are talking to, they might even include the notorious DQ1. :rolleyes::D

But, yes, this particular inquiry letter is concerning the validity of stool testing for determining gluten sensitivities, etc. That scientific research is primarily Dr. Fine's baby and we are hoping to get some clarity and updated information from him if we can.

0

Share this post


Link to post
Share on other sites
No problem. :)

Although there is still a HUGE amount we don't know about the genetics of this disease, I think most experts at least somewhat agree on the two main ones, DQ2 and 8. And depending upon who you are talking to, they might even include the notorious DQ1. :rolleyes::D

But, yes, this particular inquiry letter is concerning the validity of stool testing for determining gluten sensitivities, etc. That scientific research is primarily Dr. Fine's baby and we are hoping to get some clarity and updated information from him if we can.

From all that I have read, DQ 1 and 3 are "gluten sensitive" genes and other countries besides the US think there are more genes involved. I think US is behind in the gene area. I have gluten ataxia from gluten sensitivity and do not have full blown celiacs, although I have problems in the lower colon area.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,358
    • Total Posts
      920,531
  • Topics

  • Posts

    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
    • French Celiac / Coeliac Gluten Free Restaurant Card <strong>What is ... What to know about celiac disease, gluten sensitivity, and gluten-free diets. View the full article
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined