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Group Letter to Dr. Fine


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152 replies to this topic

#61 Gentleheart

 
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Posted 11 December 2008 - 01:29 PM

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

 
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Posted 11 December 2008 - 04:12 PM

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 :)
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#63 Gentleheart

 
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Posted 12 December 2008 - 10:23 AM

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.

:)
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#64 Judyin Philly

 
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Posted 12 December 2008 - 10:49 AM

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
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Judy in Southern CA

#65 Gentleheart

 
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Posted 12 December 2008 - 11:24 AM

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
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#66 Gentleheart

 
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Posted 12 December 2008 - 03:40 PM

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)
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#67 Judyin Philly

 
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Posted 12 December 2008 - 05:05 PM

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
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Judy in Southern CA

#68 Gentleheart

 
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Posted 12 December 2008 - 06:11 PM

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! :)
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#69 WW340

 
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Posted 12 December 2008 - 06:27 PM

Thank you, Gentleheart, and all who were involved. Great job.
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Positive Bloodwork January 2007
Positive Biopsy Feb. 2007
Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

#70 AndreaB

 
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Posted 12 December 2008 - 07:31 PM

I'll be looking forward to the reply.

Thanks to all who helped with this.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#71 Amber M

 
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Posted 17 December 2008 - 04:49 PM

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?
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Amber Martin
Gluten Free since Mid July 2008 (except a few slips)
Soy Free for over 30 years, Corn free Jan. 2009
Allergic to Clams, legumes, Soy, Pine Pollen
Still can't digest all grains (except brown rice), processed sugar
Gene Test: HLA-DQB1-Allele 1 0301
HLA-DQB1-Allele 2 0603 (genes from both parents)
Serologic equivalent HLA-DQ 3,1 (subtype 7,6)
Imulogical Gluten Sensitivity
Gluten Ataxia
Tested negative for Celiac on Blood Test after being gluten free
Tested negative for Celiac on Single Biopsy-upper intest. after being gluten free for 3 months
Candida

#72 Gentleheart

 
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Posted 17 December 2008 - 10:33 PM

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?
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#73 Amber M

 
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Posted 18 December 2008 - 11:52 AM

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
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Amber Martin
Gluten Free since Mid July 2008 (except a few slips)
Soy Free for over 30 years, Corn free Jan. 2009
Allergic to Clams, legumes, Soy, Pine Pollen
Still can't digest all grains (except brown rice), processed sugar
Gene Test: HLA-DQB1-Allele 1 0301
HLA-DQB1-Allele 2 0603 (genes from both parents)
Serologic equivalent HLA-DQ 3,1 (subtype 7,6)
Imulogical Gluten Sensitivity
Gluten Ataxia
Tested negative for Celiac on Blood Test after being gluten free
Tested negative for Celiac on Single Biopsy-upper intest. after being gluten free for 3 months
Candida

#74 Gentleheart

 
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Posted 19 December 2008 - 05:29 PM

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.
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#75 Amber M

 
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Posted 19 December 2008 - 05:39 PM

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.
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Amber Martin
Gluten Free since Mid July 2008 (except a few slips)
Soy Free for over 30 years, Corn free Jan. 2009
Allergic to Clams, legumes, Soy, Pine Pollen
Still can't digest all grains (except brown rice), processed sugar
Gene Test: HLA-DQB1-Allele 1 0301
HLA-DQB1-Allele 2 0603 (genes from both parents)
Serologic equivalent HLA-DQ 3,1 (subtype 7,6)
Imulogical Gluten Sensitivity
Gluten Ataxia
Tested negative for Celiac on Blood Test after being gluten free
Tested negative for Celiac on Single Biopsy-upper intest. after being gluten free for 3 months
Candida




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