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Idea - How About A gluten-free Convention
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90 posts in this topic

Well I was thinking if we did it in DC (free museums you know) we could march on the mall and get some news coverage for our cause but I guess we can try and get the coverage no matter where were are. Now is it Maryland everyone is thinking about now? Sorry I'm confused after skimming the posts so fast.

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I just started reading this thread- But I love all this!!! I would take ChelsE on!!!! It could be a Tx, show down!!!!!! Hey we could travel together! I would definantly go where ever this wound up being.

And seriously, it would be nice to meet everybody in person!

My DH is in advertising, He might be able to help with some of this as a pro bono type situation.

Lollie

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I just started reading this thread- But I love all this!!! I would take ChelsE on!!!! It could be a Tx, show down!!!!!! Hey we could travel together! I would definantly go where ever this wound up being.

And seriously, it would be nice to meet everybody in person!

My DH is in advertising, He might be able to help with some of this as a pro bono type situation.

Lollie

I just started reading this also.. but all these ideas sound WONDEFUL!! I can help in any way needed!

:D

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iN november columbia univeristy is having a 3 day conference. for average joe or medical prof Averge joe it is about 200 not including room but it includes food that is gluten free the event should not be missed.

NY IS A LOVELY CITY TO VISIT AND GOOD DEAL OF CELIAC FRIENDLY RESTURANTS.

I WAS TOLD IT SHOULD HAVE OVER 2000 PEOPLE. THEY TOLD ME IT COSTS THEM 600 PER PERSON

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we have something like that in the uk, its run by allergy uk and its a 3 day evevt, tickets are £9 and you get free goodie bag, make over ( gluten free), talks, new gluten-free food taisters, compotitions the works !! i had an email sent to me last week about it and i really wanted to go but it was so short notice for me as the date was this w end, ive never been to one of these things brfore it would have been really interesting!!!

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:) I was just thinking of this thread today and wondering if anyone was still interested. I would love to meet everyone :)
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This is really great! One of the best ideas I've seen on this forum.

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iN november columbia univeristy is having a 3 day conference. for average joe or medical prof Averge joe it is about 200 not including room but it includes food that is gluten free the event should not be missed.

NY IS A LOVELY CITY TO VISIT AND GOOD DEAL OF CELIAC FRIENDLY RESTURANTS.

I WAS TOLD IT SHOULD HAVE OVER 2000 PEOPLE. THEY TOLD ME IT COSTS THEM 600 PER PERSON

do you know the name of this conference? (so i can google it.)

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I just read this thread too... I would be in also. I would do whatever I can to help. I would hope to have it something within a drive of my state, like previously mentioned Washington DC or something. Keep this idea going, I am in!!!!

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I have a question, is everyone trying to meet at an existing convention like the University of Baltimore or trying to create a new convention? Who would organize it?

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I just saw this thread...and thought it would be AWESOME!!

In my area, in August, they are having a gluten-free picnic, sponsored by the Cel Kids network, for all the little gluten-free kids in the area. I was told that last year, companies came out of the woodwork to donate stuff and that all families in attendance went home with a huge bag full of products.

It would be awesome to have that type of "convention" -- food, families, and fun. In a safe environment for those who are touched by Celiac and Gluten Intolerance. I'd SO be there if I had ample opportunity to plan for it!

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Count me in, wherever, I'll be there!

I'm new to all this, but wondered about getting Annalise Roberts involved ...good promotion for her cookbook, maybe contacting OSI Restaurant Partners, Inc. for sponsorship. Most of their restaurants have gluten free menus on their websites. Again, great exposure for them.

http://investors.outback.com/phoenix.zhtml...&highlight=

From OSI's site:

Headquartered in Tampa, Florida, it was founded in 1988 and today operates 931 Outback Steakhouses (domestic and international), 209 Carrabba's Italian Grills, 108 Bonefish Grills, 41 Fleming's Prime Steakhouse & Wine Bars, 22 Roy's, 35 Cheeseburger in Paradises and four Lee Roy Selmon's restaurants. The company has restaurants in all 50 states, and Outback Steakhouse restaurants are open in 21 countries.

(I'm so excited to know about all their chains! I knew about Outback and Bonefish, but didn't know Carrabba's and Fleming's. Yum!, Memphis has these!)

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I realize this is late but it gives information about a gluten free convention that happens annually. They go to different cities each year but here is the itinerary and contact info for the next year. I was invited to attend with a friend, but was unable to attend this year. I do plan on making the next year.

Gluten Intolerance Group®

31214 - 124 Ave. SE

Auburn, WA 98092

National Education Conference, Salt Lake City, Utah

June 9-11, 2006

WHAT: Gluten Intolerance Group National Education Conference

WHERE: Sheraton City Centre Hotel, 150 West 500 South Salt Lake City,

UT 84101

WHEN: June 9-11, 2006

WHO: 15 international, national, and regional experts to present

including:

* Dr. John Zone, Professor of Dermatology, University of Utah

Health

Sciences Center. Keynote topic: skin health for people with celiac

disease.

* Dr. Carol Fenster, author/consultant, The Savory Palate, Inc.

Topic:

baking cream puffs, tea sandwiches and other delights with alternative

grains.

* Dr. Alessio Fasano, Co-director, University of Maryland Center

for Celiac

Research. Topic: advances in celiac research.

* Executive Chef Aaron Flores, DoubleTree Hotel, Illinois. Topic:

cooking

naturally gluten-free.

* Registered Dietician Shelley Case, Case Consulting. Topic:

Gluten-free

diet basics and advanced.

* Dr. Janet Harnesburger, Pediatric Gastroenterologist. Topic:

Raising

children with celiac disease.

Auction:

The Saturday night banquet will include an auction to raise funds in

support

of the programs of the Gluten Intolerance Group. Donations of items to

be

auctioned are appreciated. Contact GIG.

Exhibits:

More than 40 exhibitors with products and services related to celiac

disease

and the gluten-free diet. Attendees may place orders and buy products on

site. Authors of gluten-free living books on site to autograph their

books.

Health Screenings:

* Free cholesterol, glucose, blood pressure, and body mass

analysis by

Registered Nurses.

* Bone density testing available for a reduced fee.

Cost:

* Early bird registration by May 20 is $190 for GIG members. After

May 20 is

$238 for GIG members. Non-members pay $240 prior to May 20, or $312

after

May 20.

* Kid's Day Camp (ages 5-15) ranges $85-150.

* Child Care (age up to 4 years) ranges $40-113

* Family discount rate and one day rates available.

Registration: Sign-up online at www.gluten.net or call (206) 246-6652

to

request a registration form.

News Media Contact:

Barb Shelley, Gluten Intolerance Group, (801) 673-7837,

shelleycomm@comcast.net

Event Calendar For Immediate Release

Today's Date: March 5, 2006

For more information, contact:

Gluten Intolerance Group of North America

31214-124 Ave. SE

Auburn, WA 98092

Phone: (206) 246-6652 or send email to info@gluten.net

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There is a conference at Stanford - in September. Danna Korn is speaking!

Saturday, September 16, 2006

GENERAL PROGRAM

8:30 a.m. to 9:00 a.m. Registration & Gluten Free Continental Breakfast

9:00 a.m. to 9:15 a.m. Welcoming and Opening of Conference - Eric Sibley, M.D., Ph.D.

9:15 a.m. to 10:00 a.m. Peter Green, M.D. – Celiac Disease– The Basics

10:00 a.m. to 10:45 p.m. Gary M. Gray, M.D. – World-wide Research and Overview of CSRF Progress 2006

10:45 a.m. to 11:15 a.m. Break with the Vendors

11:15 a.m. to 11:45 a.m Gail G. Pyle, M.D. – Management of Celiac Sprue

11:45 a.m. to 12:15 p.m. Melinda Dennis, RD - Gluten free diet

12:15 p.m. to 2:00 p.m. Gluten Free Lunch & Beer Tasting

1:00 p.m. to 2:00 p.m. Office Hours – Meet with speakers; ask those questions

2:00 p.m. to 2:30 p.m. Jenny Stadler, Ph.D. – Resources for Gluten Free Products

2:30 p.m. to 3:00 p.m. Ann Whelan – New food labeling laws

3:00 p.m. to 3:30 p.m. Raffle drawing, Break with the Vendors

3:30 p.m. to 4:30 p.m. Danna Korn - Live -and LOVE -- the gluten-free lifestyle

http://www.celiacsprue.org/conference.htm

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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