2009 Gig Conference Planning

[cruelshoes]

Last night was the first conference call for planning the 2009 GIG conference. It takes place in Seattle next year, so I want to be on the planning committee. Cynthia Kupper of the GIG is great, and very enthusiastic. She sounds like a real superwoman! I am really excited to help, and can't wait to attend! I'm not in charge of the event or anything, just an enthusiastic committe member.

They asked us to brainstorm topics. I did a mind dump this morning, and the list below is what I came up with. I have no idea if any of them are any good, or if they have been used before. The first day of the conference will be lighter and focus on food, the second day focuses on the medical side. They also talked about doing a program for dieticians or a childrens program. Do you have any other ideas to add to the ideas I came up with (That may or may not be creative at all )? I have cross posted this to several forums, so I apoligize if you are reading this more than once. I want to have as many ideas as possible for our next meeting so we can come up with a great program. I am celiac, so I think from that perspective, but would love to include some things haveing to do with non-celiac gluten sensitivity

Genes, glorious genes

[Lockheed]

You're making me want to sign up. I've never even heard of this before. Maybe I will go...

[Phyllis28]

That sounds like a great conference. I am not sure how many people would be interested but a section on combining gluten free with other food intolerances or other medical conditions such as Diabetes, Chron's, Kidney disease ect.....

Also, I see periodic posts by people who have gotten stranded and hungry without gluten free food in sight. Preperation and planning in the daily life of a celiac might be an interesting topic. It relates somewhat to the summer travel topic and maybe the two can be combined.

[Live2BWell]

LoL, I want to go too

They sound like great topics!

I think that a couple of other great topics could be:

The Gluten Free Scholar: College and Gluten Intolerence

I Love You, But Do I love Your Celiac?: Friends, Family, & Loved Ones of Celiacs and Gluten Intolerant/Gluten Sensitive People

Making Peace With Your Body - inside & out: Gluten Sensitivity and Autoimmune Disorders

[Live2BWell]

Also, I see periodic posts by people who have gotten stranded and hungry without gluten free food in sight. Preperation and planning in the daily life of a celiac might be an interesting topic. It relates somewhat to the summer travel topic and maybe the two can be combined.

That's a great idea! Gluten Free S.O.S.

[debmidge]

I'd like to see a doctor have a comprehensive list of what to check for AFTER the celiac diagnsosis...like make sure the patient is checked for osteoporosis (esp. if patient has gone years undiagnosed or misdiagnosed) and check into other conditions/syndromes which occur in a celiac (small intestine ulcers, vitamin deficiencies, anemia, etc.). Like a Protcol for keeping the celiac patient on "track" -- must go back for an annual Celiac blood panel, etc.

[gfp]

Here's a suggested itinerary...

Take that sell out Cynthia Kupper and ask how much McDonalds paid her to lie.

Gluten Intolerance Group (GIG) applauds McDonald

[Jestgar]

Tips on how to educate family, friends, roommates, teachers etc on the importance of eliminating cc.

Mainstreaming - how to eat gluten-free and look just like everyone else. May be especially important for kids, but even adults have times when they don't want to stand out.

And one complaint about last years (I think it was this conference). I couldn't get any info (like how much it costs, does the entrance fee include food samples, were there all day events, or was everything timed) until about a week before the conference. Because of that I didn't go (and I was so annoyed at the lack of helpfulness that I didn't renew my membership and I have no intention of going to any events this year). I even sent multiple emails trying to find out stuff and they were never answered.

So while you're being a helpful minion, try sneaking in a few lectures on common courtesy.

[cruelshoes]

So while you're being a helpful minion, try sneaking in a few lectures on common courtesy.

A minion is either a fawning sycophant or an african shrub. Which one are you suggesting I put on my business cards? I'm trying hard to figure out how it isn't a personal attack on me. So far I am coming up short.

[Jestgar]

A minion is either a fawning sycophant or an african shrub. Which one are you suggesting I put on my business cards? I'm trying hard to figure out how it isn't a personal attack on me. So far I am coming up short.

Sorry, I was thinking more of the first definition:Open Original Shared Link

Or the second one of these:

min

[cruelshoes]

Printing. a 7-point type.

No animosity at all directed at you. I'm just miffed that GIG could be such a great resource, and they aren't.

As long as you are not calling me a 7-point type. That I cannot abide. Who knew minion had so many definitions.

All of my dealings with the GIG have been overwhelmingly positive, so I can't explain why your experience was different. Perhaps the conference will be so good you won't be able to resist the draw of free samples and the chance to see the *highly crushable* Dr. Fassano in person.

[lovegrov]

Hey, gfp, Cynthia Kupper has done more good for people with celiac than you would do if you lived another 500 years.

richard

[lovegrov]

"No animosity at all directed at you. I'm just miffed that GIG could be such a great resource, and they aren't. "

Let's see, GIG got Outback, Carraba's etc to come up with a gluten-free menu, it started the gluten-free certification program for companies, it's involved in another restaurant program, it successfully challenged NUMEROUS false alarms about ingredients sent out by CSA, it was part of the coalition that got the allergen labeling law passed (CSA wasn't), and it puts on a far superior conference.

Yep, GIG is a terrible resource. Just awful.

richard

[neesee]

The GIG was my lifeline back in 1988. Dh called our local health department for information on celiac, and they sent me info put out by the GIG. My very first newsletter and gluten-free dietary guidelines.I became a member and bought my first gluten-free cookbook from them. God bless the GIG.

neesee

[gfp]

Hey, gfp, Cynthia Kupper has done more good for people with celiac than you would do if you lived another 500 years.

richard

Its doubtful, there is a small bush in my garden has done more for celiac then Cynthia Kupper.

Just doing nothing at all is better than actively endorsing the idea that certain unsafe things are safe.

Just who is she .... what does Cynthia Kupper, RD, celiac disease mean (what is RD or celiac disease)

In what way is she qualified to make statements on behalf of all celiacs on the safety or otherwise of products?

Don't get me wrong, she's not alone ... the UK equivalent is just as bad ... and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay.

CUK actively fought against legislation that would require manufacturers to list allergens ... (reason? they sell a book with the same info)

They campaign for biopsy only being recognized ....

They have buried research paid for by the charity when it has been in conflict with their 'sponsors'.

(This researchg is available because it was a published post doc thesis yet even though they then hid this information from their members)

The self appointed spokespeople are incredibly dangerous .... she has shown her colors by wholeheartedly saying McDo fries are safe.... which is something McDo's cannot say for themselves ...

[lovegrov]

"(what is RD..."

It's really not all that tough to figure out. RD -- registered dietitian. She's internationally recognized as an expert in various aspects of celiac and gluten free eating. She is also chair of Dietitians in Gluten Intolerance Diseases (DIGID), a specialty group within the American Dietetic Association (ADA) working to provide quality materials and education to dietitians. I'm just taking a wild guess here, but something tells me she knows just a tad more about it than you do.

Kupper is far from the only celiac expert who agrees that McDonald's french fries are indeed safe to eat.

"...and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Are you saying Kupper is personally taking cash to declare unsafe restaurants OK (and exactly what is a "questionable" restaurant anyway -- we take a chance any time we go to a restaurant that has gluten on the menu)? If so, I think you'd better put up your proof pretty quickly. And, no, telling us to do a Web search isn't good enough. If that's not what you meant, your post needs a serious edit because it sure sounds like you're accusing her of either a crime or of serious ethical violations.

Neither Kupper nor anybody else is FORCING anybody to eat the fries. There are quite a few people, including a number here, who have listened and read and have decided not to eat the fries. That's the way it should be. Kupper is not standing over them with a baseball bat. And Ronald McDonald isn't coming to your house to force the fries down your throat.

richard

[lovegrov]

BTW, cruelshoes, thanks for asking about topics for the next GIG conference.

richard

[Jestgar]

Perhaps I should have specified the Seattle chapter. My experiences with them have been, hm, not-helpful isn't quite the right word, non-existent doesn't demonstrate that I spent weeks trying to get a hold of anyone when I first discovered this gluten thing, but I got no no answered phone calls, no responses to messages, no answered emails, nothing...perhaps disappointing is the right word.

[Jestgar]

As long as you are not calling me a 7-point type. That I cannot abide. Who knew minion had so many definitions.

You are at least a 10-point type in my book

[lovegrov]

I'm sure that some specific chapters are better than others. That usually depends on the leadership and how involved members are willing to be. This is true with virtually any organization.

richard

[Ckupper/ GIG]

Richard

First let me say thank you for standing up for me. I do not often feel called to defend myself and my work. The comments I first saw in a google alert are potentially quite damaging.

I am not sure why I feel a need to address these comments, as I would normally ignor them. Maybe because I am tired. I am now on day 4 of 10 where I stand in a very small kitchen for 14 hours a day with one volunteer, to cook for celiac kids, so that they can have a wonderful 'real-world' camping experience. Seeing them smile the biggest smiles and being so excited about the food and knowing we are educating 300 other kids about celiac disease at the same time, makes it all worth it. Maybe because I have to figure out how to do my normal 12 hour workload at the same time as doing camp...maybe because I am offended by the idea that I am getting rich working for a nonprofit.

My background: I left a job 12 years ago making a decent wage as a diabetes educator in a large hospital. Today my wage is only 10% more than I was making then and the benefits are not nearly as good. I am not getting rich. I give back nearly 10% in donations to GIG every year. I work 12 hours a day 5-6 days a week, not for the glory or wages - but because it was the right thing for me to do with my life. My situation is not that different from other people running small nonprofits. I am not complaining - just stating facts.

I take pride in my job and am not willing to put my reputation or credentials at risk. Malpractice is nothing to play with. When I make comments and recommendations, they are based on the best science and research available at the time, and doing my homework well. I do not take bribes and have never been 'paid off' by companies. This is a huge conflict of interest.

If there is proof that I have done something wrong and am putting people at risk - please bring it forward. My Board needs to know and I want to know. My personal mission is to make life easier for persons with gluten intolerances. I live with this condition too and know all too well how challenging it can be.

I would love to share with anyone the work GIG is doing and the difference it is making to the entire community. Our programs are innovative and proactive in making life easier for persons with gluten intolerances.

Just to keep the record straight. I no longer head the DIGID group. I passed that role onto another Dietitian about 3 years ago, so that I could focus on other projects.

Thank you for allowing me to defend myself and the work I do.

Cynthia Kupper, RD, celiac disease (celiac disease=certified dietitian. WA state certifies rather than licenses)

Executive Director

Gluten Intolerance Group of North America

my email: cynthia @gluten.net

www.gluten.net

www.GFCO.org

www.GlutenFreeRestaurants.org

"(what is RD..."

It's really not all that tough to figure out. RD -- registered dietitian. She's internationally recognized as an expert in various aspects of celiac and gluten free eating. She is also chair of Dietitians in Gluten Intolerance Diseases (DIGID), a specialty group within the American Dietetic Association (ADA) working to provide quality materials and education to dietitians. I'm just taking a wild guess here, but something tells me she knows just a tad more about it than you do.

Kupper is far from the only celiac expert who agrees that McDonald's french fries are indeed safe to eat.

"...and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Are you saying Kupper is personally taking cash to declare unsafe restaurants OK (and exactly what is a "questionable" restaurant anyway -- we take a chance any time we go to a restaurant that has gluten on the menu)? If so, I think you'd better put up your proof pretty quickly. And, no, telling us to do a Web search isn't good enough. If that's not what you meant, your post needs a serious edit because it sure sounds like you're accusing her of either a crime or of serious ethical violations.

Neither Kupper nor anybody else is FORCING anybody to eat the fries. There are quite a few people, including a number here, who have listened and read and have decided not to eat the fries. That's the way it should be. Kupper is not standing over them with a baseball bat. And Ronald McDonald isn't coming to your house to force the fries down your throat.

richard

[jerseyangel]

Welcome to our board, Cynthia

It's very nice to have you here, I'm sorry it isn't under more pleasant circumstances. Thank you for all that you do for Celiacs everywhere.

[gfp]

"...and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay."

Are you saying Kupper is personally taking cash to declare unsafe restaurants

I think you need to reread what I wrote as you misquoted me while talking about CUK.

Here is what I wrote:

Don't get me wrong, she's not alone ... the UK equivalent is just as bad ... and a little research shows the directors of the "non profit" organisation raking in the $$$$ and passing questionable resto's that pay.

So questions:

I think these are reason able questions for someone who is claiming to speak on behalf of others.

My background: I left a job 12 years ago making a decent wage as a diabetes educator in a large hospital.

So are you diagosed celiac ? ( A simple yes or no answer)

Executive Director: Gluten Intolerance Group of North America

So who elected you? (Who are you speaking on behalf of?)

Back to McDonalds fries....

McDonalds themselves have vast resources, a whole McDonalds university and lots of money yet they have no declared the fries to be safe.... and the analysis itself although only semi quantitive (ELISA and RAST) found traces of gluten.

There is considerable research showing that trace amounts of gluten do cause damage in celiacs.

Muscle Nerve. 2006 Dec;34(6):762-6.

Journal of Neurology Neurosurgery and Psychiatry 2003;74:1221-1224

When I make comments and recommendations, they are based on the best science and research available at the time, and doing my homework well.

Best Science and research is Peer Reviewed articles in serious scientific journals.

However there is much, sometimes contradictory research. Those funded by the food industry would seem to indicate that a little gluten is OK. Those undertaken as medical studies tend to the inverse. However, I have not seen a single peer reviewed clinical study where a gluten-light diet (CODEX and CC) say's that no damage is seen through a significant study sample.

By commenting and saying McDonalds fries are safe you place all celiacs in difficult positions....

Firstly, regardless of the analysis of the oil the chance of cross contamination in the final product remains.

Regardless of other comments I thought we had moved away from the "just peel off the cheese" and "take out the croutons" mentality.

Making statements that McDonalds fries are safe completely misses the issue of cross-contamination, hence why McDonalds have not made this statement for themselves.

Unfortunately this statement brings us back to the cross contamination issue... which has not to my knowlege been addressed.

Neither Kupper nor anybody else is FORCING anybody to eat the fries. There are quite a few people, including a number here, who have listened and read and have decided not to eat the fries. That's the way it should be.

Actually not everyone reads THIS forum... many people's family, friends and employers might search for gluten free ...

The celiac is then pressured into "just have the fries, they're gluten free" ...

By accepting the very scant (and misleading) report from McDonalds on the analysis and publishing an acceptance that the fries are safe for celiacs McDonalds can now escape a proper study involving quantitive analysis of the fries and the oil and the final product. Now we will never know.... because GIG make a statement that the fries are safe. McDonalds don't need to do ANYTHING to back this up... and if anyone does take the initiate and have the fries sampled and analysed then McDonalds is in the clear... they never claimed they were gluten free.

The same can be said for outback etc.

Its all very well them saying things are gluten-free but experience of many members here has shown that in many cases the staff are not aware of cross contamination.

Back to my UK experience....

CUK have licensed many resto's, mainly chains (as they charge for this).

I am pressured by my boss to eat at these places yet in most it is clear the staff are not trained nor aware of cross contamination. They check a printed list... the food arrives with bread on the plate or a mystery dressing etc.

When you check deeper many of these establishments cook on the same grill... offer a beer ... or any of the common warning signs we see.

The same confusion occurs over distilled alcohol.

the statement that all distillted alcohol is gluten free is doubly misleading.

Firstly, gluten is not the problem, gliadin is ...(or more accurately an even smaller part of the peptide chain)

Testing for gluten tests for these chains (which are common to rye) but is expressed in total Nitrogen.

Talking about gluten being too large is misleading since it is only this petide chain which needs to be present in the distillate.

Secondly... predicting the exact composiotn of a distillate is nearly impossible but in the case of whisky or complex fermented products actually impossible.

Each fermentation is different and comprises hundreds of different products.

Water and alcohol themselves are an azeotrope

Many of the components from fermentation are themselves part of a complex eutectic so that the partial pressure of one component wrt another will affect the mutual partical pressures and final eutectic.

Prolamines are themselves soluble in alcohol thus changing the partical pressure wrt. ethanol:water but they are equally soluble in many of the other complex carbohydrates produced.

The only real way to be sure is via screening and then quantitive sampling of any nitrogen detected.

However: Again, this is almost mute as many distilled alcohols then add caramel color or other possible gluten containing products.

[Ckupper/ GIG]

In response to your question:

So are you diagnosed celiac? ( A simple yes or no answer).

Yes. I have been diagnosed since for over 15 years with classic celiac disease of which I nearly died before my diagnosis.

So who elected you? (Who are you speaking on behalf of?)

I was elected by the Board of Trustees of GIG in 1996, after the founder of the organization basically handed me the organization on her deathbed. I had worked with her (a PhD researcher) for a couple years before she decided I was the right person to take over. The Board agreed and has continued to agree that I am a good spokesperson for GIG. We also consult our medical advisory board on issues, so that we can be sure we are giving correct information.

I don

[Lisa]

Cynthia,

I would also like to extend a warm welcome to our small part of the world.

Celiac Disease research and public awareness has come such a long way in the three years since I have become one of the many. I attribute much of that success to you and your work with the GIG.

Hats off to you.

Lisa