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17 replies to this topic

#1 Lisa

 
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Posted 18 September 2006 - 05:22 PM

Scott:

I have been hanging around here for over a year. I can not tell you the scope of the help that I have gotten from this site that you have created. I praise you for your effort, and as well, I hope that it has been productive for you. When lost in a world that no one understands, I find peace here and a comfort that can not be found elsewhere. I truely believe that, with the creation of this site, you may have save many lives.

Many cheers to you.

With that said. I would like to ask, "what was the motivation in creating this forum, that many of us are so dependent on for information".

Would you kindly tell us a little about "you"? :)

Lisa
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Lisa

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#2 AndreaB

 
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Posted 18 September 2006 - 05:25 PM

Yes, Scott, Thank you for creating this forum as a branch to your site. I have made some wonderful friends and learned a lot!
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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.


#3 Ursa Major

 
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Posted 18 September 2006 - 05:27 PM

Follow this link to get his story: Scott Adams' Story of His Diagnosis of Celiac Disease
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

#4 Lisa

 
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Posted 18 September 2006 - 05:50 PM

Ursula:

thanks for that post as it answered all my questions.
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Lisa

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"Not all who wander are lost" - JRR Tolkien

#5 admin

 
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Posted 19 September 2006 - 06:50 AM

I just saw this topic today (I actually don't get to browse the forums as often as I'd like). In case anyone is wondering about my professional background, I have a B.A. in History with a minor in German (I did a one year exchange at Tuebingen University in Germany). I had several jobs right after college, and my favorite was working for an environmental group called Clean Water Action. I moved from Tempe, AZ (where I grew up and went to college) to San Francisco in the early 90's. Around then I thought that I wanted to become a lawyer, so I worked as a corporate paralegal for about five years, then switched death penalty defense for the State of California's Habeas Corpus Resource Center. I got diagnosed with celiac disease in about 1994 and started what because Celiac.com in 1995--there wasn't a single site on the Internet at that time that was solely dedicted to the topic--only about 10 pages total that was scatted buried on 2-3 different sites. I started The Gluten-Free Mall in 1998, and running these sites became a full time job for me in 2001. I now live in Santa Rosa, CA with my wife and two children.

Take care,
Scott
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Scott Adams
Celiac.com - Celiac Disease Board Moderator
Founder Gluten-Free Mall
Founder Celiac.com

#6 CarlaB

 
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Posted 19 September 2006 - 06:58 AM

Good googly moogly Scott... now I wish I had done something useful with my life... I am jealous... :lol:

Thanks so much!

And who is that your holding? Is there something about that that's not useful????

Thanks for posting, Scott, it's good to see your around the forums and interesting to hear how this all came about. I am curious ... who was member number 1?
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#7 Guest_Robbin_*

 
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Posted 19 September 2006 - 07:00 AM

:) Thank you Scott for sharing and for your work to help others who are struggling. Your warmth comes through your post and wow, what a resume'! You should add to that resume' "Life Saver" for that is what you are doing-helping to save lives, perhaps relationships, and health of many. :)

Celia, you have done amazing things with your life. A big thing you have done is make others smile and happy in the midst of misery of illness. Thank you too. :D
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#8 admin

 
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Posted 19 September 2006 - 08:16 AM

There is no longer a user #1, that user was a programmer who helped me set the board up. We deleted his account after we set it up.

FYI: I almost caved in to pressure to discontinue the older version of this board (and the idea of a board altoether) because a very large celiac support group in the UK told me that they were removing the link to my site on their site because of the board. They believed (at that time anyway) that boards were only full of "misinformation" and that I would actually be hurting people by hosting a board. It was very early on and after I saw what was happening on my board--that it was actually very "self correcting"--I decided to keep it even if they didn't link to me anymore.

Take care,
Scott
  • 0
Scott Adams
Celiac.com - Celiac Disease Board Moderator
Founder Gluten-Free Mall
Founder Celiac.com

#9 jerseyangel

 
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Posted 19 September 2006 - 08:25 AM

Thank goodness you stood your ground on the board! Can't imagine what I would have done without it this past year :)
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#10 Ursa Major

 
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Posted 19 September 2006 - 08:29 AM

I am awfully glad you kept the board, Scott, I would NEVER have been able to figure out all my intolerances and health concerns without the people here!

Interesting about you studying in Germany for a year, I imagine your German must be quite good (even though possibly a tad rusty by now :P ).

Okay, I read about your son having the celiac disease genes. Anyway, now that we're finding out more about you, how about telling us a little bit about your family, too?
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

#11 AndreaB

 
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Posted 19 September 2006 - 09:10 AM

I got to say I'm glad you kept this board up too Scott.

I knew I was IgG Allergic to wheat, gluten and gliadin, but would have remained gluten light until I stated developing more symptoms and my infant son's eczema would not have cleared up completely. I've learned everything I know about celiac and gluten intolerance on this board and your parent site.
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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.


#12 Turtle

 
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Posted 19 September 2006 - 09:48 AM

Thanks Scott for sharing a little about yourself and for sharing celiac.com with all of us!
You've touched a lot of people's lives and that is something you should be very proud of!
All your hard work is much appreciated & does not go unnoticed.
Have a great day!
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~Turtle~

#13 Canadian Karen

 
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Posted 19 September 2006 - 10:19 AM

Scott,

I am sitting here in awe, thinking about how one person could make such an impact in the celiac world.

Here you are, just a regular guy (I mean that in a good way!), who took the bull by the horns and poured your heart and soul into this website. The fact is you have made such a HUGE impact in the celiac world and to people WORLDWIDE and for that you should be incredibly proud of your accomplishments.

You are a true and shining example how much one person can make a difference. It gives me renewed strength in my quest to educate insurance companies and get them on our side when it comes to getting doctors to test for celiac. You have shown me that it CAN be done!

Forever Grateful,
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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#14 nikki-uk

 
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Posted 19 September 2006 - 10:25 AM

FYI: I almost caved in to pressure to discontinue the older version of this board (and the idea of a board altoether) because a very large celiac support group in the UK told me that they were removing the link to my site on their site because of the board. They believed (at that time anyway) that boards were only full of "misinformation" and that I would actually be hurting people by hosting a board.


Goodness,what an unfriendly lot!!(We're not all like that in the UK you know! ;) )
Glad you didn't bow down to the pressure!
:)
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Nikki



Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#15 Jestgar

 
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Posted 19 September 2006 - 11:06 AM

Scott,

Here you are, just a regular guy...

Hopefully, since he's gluten-free now
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