2009 Gig Conference Planning

[lovegrov]

"I doubt your beyond this..."

Whether you believe it or not, this makes absolutely no sense. Is "your" supposed to be "you're?" And "beyond" what?

Still awaiting your proof of Cynthia's sellout. I have to assume you have none.

richard

[gfp]

"I doubt your beyond this..."

Whether you believe it or not, this makes absolutely no sense. Is "your" supposed to be "you're?" And "beyond" what?

Still awaiting your proof of Cynthia's sellout. I have to assume you have none.

richard

You seem to be just looking for an argument and I really can't be bothered to argue with you.

[happygirl]

Cynthia,

Another warm welcome from a grateful Celiac/gluten intolerant person that you and GIG have helped so much. You are such a trusted source in the Celiac/gluten intolerant community. Your work and advocacy has impacted so many lives - so many more than you will ever know. Thank you for all that you do!

[lovegrov]

You seem to be just looking for an argument and I really can't be bothered to argue with you.

Nope. Your post made no sense (I also don't see where anybody else thought it made sense) and I'm asking you to explain.

I'm also still asking for your proof that Cynthia took money to defend McDonalds. Nothing about that is looking for an argument. It's looking for proof you're not libeling one of the top celiac advocates in the country.

It would appear that you have no such proof. If you don't, you should go back and edit your original post to eliminate that spurious claim.

richard

[Ckupper/ GIG]

I can't believe this converstaion is still going on. I dont know if I should be amused, honored, insulted or continue to defend myself.

Tell you what - nonprofits are suppose to be transparent. I will open the GIG books (its the law that I have to) to anyone wanting to find that money I got...I'd even open my personal books (not much to show, so it would be a quick search)- I need a vacation and I haven't seen that money!

Serioulsy, I dont know what I am doing that is making some people want to discredit and dislike me so much. Should GIG have an opinion? Should CSA? or CDF? or any patient support organization? How do patients get support if not from us? At least GIG's information is based on science and in agreement with credible medical and health care institutions - the American Gastronenterology Assoc, the Amer. Dietetic Assoc, NASPAGHAN, FDA, NIH, Health Canada, and many others. I guess we could all be wrong...or maybe we are providing the best recommendations that are available today based on the latest and best science.

Anyway - GIG is looking for topics for our conference and the best topics come from people like you. Some great ones have come up - thank you all.

BTW - our office is at 31214 - 124 Ave SE, Auburn WA, let me know when you want to see the books! They are audited every year by an outside source, so as my friend would say "I aint afraid..."

Cynthia K

[lovegrov]

Cynthia,

Pretty much everybody on this board completely disagrees with gfp and in fact thinks his comments on this thread are just about as idiotic and baseless as can be. There apparently are a few who might agree with him, but the rest of us respect you and all you've done. Gfp, on the other hand, has done little more than sow dissension based on nothing. One can only hope he won't be around this board much longer.

richard

[cruelshoes]

I posted this topic on three discussion boards. This is the only board on which it turned ugly. I am quite honestly baffled at what happened on much of this thread. I do not anticipate asking any questions here in the future. I have a splitting headache, and can't see how this ended up so totally FUBAR. Very disappointing.

[GFinDC]

How about a topic on expanding testing for celiac? It seems to me there should be routine celiac testing done whenever thyroid issues are suspected. Are there other situations where a celiac panel testing should be performed, where it is not the norm to perform it now? Like in other autoimmune diseases. How can doctors be encouraged to start doing more celiac blood work testing when they don't consider it many times now? The average diagnosis time is 11 or 12 years right? There could be something wrong with that scene. Is it hard for doctors to get testing arranged, or is it that their training and manuals don't push celiac testing? Do we need to spam their offices with materials to get them to pay attention? To make it easier for them maybe? It seems like this should be a goal for all celiac organizations, to shrink the diagnosis time. Maybe cut it in half in 2 years? Pretty ambitious maybe, but it could really affect a lot of people in a positive way. I know, easier said than done. Just a thought.

[ravenwoodglass]

Cynthia,

I agree that GFP was way out of line. I don't know if he would have edited out the inflammatory remarks if he could have but that can only be done for a couple hours after posting. You do need to know that noone else here feels the way he did when he posted. I am sorry that his post was not immediately deleted.

A couple ideas for the conference.

We really need to address the issue of gluten ingredients used in medications, both OTC and script. Wheat starch in any form, even codex, needs to be kept out of all meds. With the number of undiagnosed celiacs in this country having this substance in meds means that those of us undiagnosed may end up with idiosyncratic reactions and side effects not due to the med itself but to it's binders.

The US needs to look at more effective ways of diagnosing us than we currently use here. The disorder should be screened for in ALL of our children. The effects on learning and mood are to dire to ignore. US doctors really need to be made aware that celiac is more than a intestinal disorder. For some of us that is the last organ to be affected. The oral and rectal challenge and biopsy are much better tests but US doctors don't want to use them because they are so sensitive and reliable. Doctors here seem to not even want to consider celiac until we are in the end stages. I know of no other disease that you must be at the end stages before a doctor will even consider it a possiblilty. Here we would rather toss meds for symptom relief in the earlier stages and let the person become almost totally debilitated before it is even considered.

[lovegrov]

I posted this topic on three discussion boards. This is the only board on which it turned ugly. I am quite honestly baffled at what happened on much of this thread. I do not anticipate asking any questions here in the future. I have a splitting headache, and can't see how this ended up so totally FUBAR. Very disappointing.

One poster name -- gfp.

richard

[Scott Adams]

Hello Everyone,

First I'd like to apologize to Cynthia for GFP's behavior in this thread. The moderators and I feel that he crossed the line here and he was given a warning for his behavior.

Second, I'd like to address some comments that GFP made that are false and misleading.

GFP is looking at history here with 20/20 hindsight, and fails to understand that it was McDonald's that was the first major chain restaurant in the USA (and perhaps the world) to actually attempt to publish allergy information about the foods on its menu. This was way before any labeling laws, and way before they had to do this. They acted in good faith and were not trying to mislead anyone. They claimed that their French Fries were gluten-free, when in fact one ingredient in a flavoring does indeed have trace amounts of gluten in it. It is my understanding that the amount of gluten in their fries would still be way under 20ppm. Contrary to what GFP claims, there is plenty of research to show that trace amounts of gluten do not harm celiacs, and if you would like to read some of the research on this topic please go to:

https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/

McDonald's was sued by a small number of people over this issues and they settled that suit. They took the "gluten-free" claim off their fries, likely because there are not yet laws in the USA that regulate that claim, and their attorneys advised them to do so until there are clear regulations.

In any case, the amount of effort that McDonald's put into providing allergen information to the community should be commended, and I believe that the GIG's press release supporting McDonald's was appropriate. McDonald's is not trying to hide anything, and neither is the GIG--both have only tried to help the community by providing helpful information.

Many trusted "gluten-free" companies that cater to celiacs have (for one reason or another--usually cross-contamination) had product recalls in Canada and other countries, and issues with gluten content in their foods. This does not in any way imply that they intended to hurt anyone and only care about making a buck. I believe any company that finds themselves in such a situation are horrified and do their best to correct the situation. Gluten cross-contamination can happen to any company, even in a so called "gluten-free" facility. This is why labeling standards cannot be set to zero, that number doesn't really exist in science of food testing, and there are studies that have been done and are being done to determine a safe level of gluten ingestion for celiacs.

GFP's zero tolerance doesn't work in the real world, and trying to implement it into law would simply cause companies to stop using "gluten-free" on their labels due to liability concerns--would that be helpful to celiacs?

To get back on topic, GFP's attack on Cynthia and the GIG was way out of line, and the "information" he brought up was incorrect and misleading. McDonald's should be praised for their continued efforts to provide allergy information for their foods, and Cynthia and the GIG should be praised for all their hard and very important work to help celiacs all over the world.

Take care,

Scott

Here's a suggested itinerary...

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

Indeed McDonalds never did provide proof, this is a deliberate lie by Kupper.

McDonalds provided proof that McDonalds fries DO CONTAIN GLUTEN and CASEIN...

No research shows that the trace amounts of gluten in McDonalds oil does not damage celiacs.

Yet here she is endorsing their product ???

She doesn't mention cross contamination (even if the oil was safe) simply say's that the fries are safe.

Regardless of individuals opinions, tolerances and such a blanket statement made on behalf of McDonalds which contravenes the analysis and disregards the chance of CC this is so far from acceptable she deserves some jail time.

I think some questions need to be asked and her fitness to be a member, let alone Executive Director of GIG should be challenged.

McDonalds cannot state this themselves, the analysis states otherwise and the risk of CC in the millions of portions they serve daily is close to a certainty.

Statements like her's set back our ability to get safe food by years. They put celiacs at risk and most of all they give a false impression.

[gfp]

Contrary to what GFP claims, there is plenty of research to show that trace amounts of gluten do not harm celiacs, and if you would like to read some of the research on this topic please go to:

https://www.celiac.com/categories/Gluten%25...s-Wheat-Starch/

Yet the first article is the Fasano study (with the tabular data removed).

The missing tabular data clearly shows a 9% reduction (from memory) in Vh/c-d for the 10mg/d group.

Every time I read one of these studies the wording is always along the lines of "no significant extra damage above...." which is not the same as no damage.

The Fasano tabular data clearly shows the group with the placebo had increased Vh-c-d ...

Cynthia Kupper stated in her posts that there was no scientific evidence but that because European morbidity and fatality was not increased it seemed logical that .. (since these people are eating codex starch) the level must be OK.

This logic is flawed as one of the posters actually said.

I receive FREE codex wheat bread (if I wanted it) (well it would cost

[Jestgar]

The strange thing is ... this is our food. Almost every other industry has far more stringent testing.

The oil industry in the North Sea are required to remove oil from water that has been used for injection before returning it to the sea.

They are not required to return it in the state they pumped it out of the sea but much much cleaner. (The majority of oil in the North sea is a consequence of the use of marine diesel engines). They are required by law to do extensive testing and proof.

The same is true for sewage water treatment etc. The companies must do regular testing AND submit to random tests.

A food company can add waste products (and gluten) and are not required to prove it nor submit to random tests.

If we set a 200ppm limit then companies will use that to set their QC/QA. They will drift over and under but aim for the 200ppm. Indeed a few will deliberately flout it when convenient and the labs (who also do other work will warn them before they come round).

If we set it at 5 its up to them to set their QC/QA to this limit.

All the talk of it not being possible isn't really true, its just inconvenient for the food companies.

gluten-free should mean as much as possible gluten-free.

10, 50 or 200 ppm can be labelled as just that.

I agree with this. Why shouldn't zero tolerance be the goal? Why shouldn't they label the trace amounts of gluten so people can make a choice?

Perhaps that's another topic for the conference - should we work towards stricter guidelines and labeling?

[Scott Adams]

GFP you're trying to turn this thread into a labeling debate, which it isn't. You are also ignoring the fact that you attacked someone in this thread whose sole aim is to help celiacs like you--and you basically accused them of lying and taking money to promote McDonald's.

You conveniently ignore scientific data, and you fail to understand that while setting a personal goal of zero tolerance is perfectly fine and both Cynthia and I recommend this, it may not work for labeling regulations. You also keep using 200ppm, but the actual amount to call something gluten-free is now 20 ppm in Europe and Canada, and will likely be the same in the USA. This just came out today:

Aliment Pharmacol Ther. 2008;27(11):1044-1052.

Systematic review of studies published between 1966 and May 2007: Tolerable Amount of Gluten for People With Coeliac Disease

Conclusions: The amount of tolerable gluten varies among people with coeliac disease. Although there is no evidence to suggest a single definitive threshold, a daily gluten intake of <10 mg is unlikely to cause significant histological abnormalities.

Again, it won't do anyone any good if you make zero tolerance laws because you can't test that low, and any lawyer worth their salt would never recommend that ANY company put a "gluten-free" label on a package if the threshold is zero--don't forget, these companies get ingredients from many sources that are out of their control.

Please quit hijacking this thread and start a new one on the topic of labeling laws--this thread is about topics for the upcoming GIG conference.

Take care,

Scott

[lovegrov]

"I certainly didn't set out to upset Cynthia but I think these are relevant questions for the GIG."

I see. So you don't think people shouldn't get upset when they're called a liar and a sellout. And when you opine that you have a bush in your yard that has done more good for celiacs than the person you're talking about.

You sure have a funny way of going about not upsetting people.

Face it, your comments were some of the most vile (and unsubstantiated) I've seen on any celiac forum.

richard

[Generic]

Does any one know when (exact dates) and where (location) exactly the conference will be held?

[cruelshoes]

Does any one know when (exact dates) and where (location) exactly the conference will be held?

It will be June 5 - 6 (Friday and Saturday) 2009 at the Sea Tac Marriott. You can attend one day or both days. The first day will be lighter and focus on food and cooking, and the second day will be more clinical and deal with the medical side.

The next planning meeting is Monday, so if anyone else has any other ideas to throw into the mix, feel free to share them.

[Gemini]

How about a topic on expanding testing for celiac? It seems to me there should be routine celiac testing done whenever thyroid issues are suspected. Are there other situations where a celiac panel testing should be performed, where it is not the norm to perform it now? Like in other autoimmune diseases. How can doctors be encouraged to start doing more celiac blood work testing when they don't consider it many times now? The average diagnosis time is 11 or 12 years right? There could be something wrong with that scene. Is it hard for doctors to get testing arranged, or is it that their training and manuals don't push celiac testing? Do we need to spam their offices with materials to get them to pay attention? To make it easier for them maybe? It seems like this should be a goal for all celiac organizations, to shrink the diagnosis time. Maybe cut it in half in 2 years? Pretty ambitious maybe, but it could really affect a lot of people in a positive way. I know, easier said than done. Just a thought.

This is an excellent idea! I have been going through hell with my husband's doctor over this very issue. The circumstances are a little different but it's the same basic problem......how to get them to test for Celiac properly when there are many other symptoms that the AMA doesn't recognize or connect to celiac disease?

My husband doesn't have excessive gastro symptoms at all but is 5'7" and weighs 135 lbs. If he doesn't eat his usual HUGE amount of food everyday, he loses weight. He is 49 years old and it just doesn't seem normal for a guy that age to be able to eat like a teen-ager and not be fat. He is also slightly anemic and is straying closer to hyper-thyroid numbers on his ONE thyroid test the doctor would only do....yes, the TSH.

He also sleeps a lot because of fatigue and takes naps when he can. His AMA doctor performed one test....he's a one test kind of guy. The paperwork said only one thing....IGA, which means what? Total IGA? He didn't think it necessary to do a full Celiac panel or a full thyroid panel, for that matter.

I then told my husband to go back and ask for a bone density test because it would be highly unusual for a man to have osteopenia/porosis. This could be a huge indicator of malabsoption so the doctor told him that he would have to get "permission" to do the test, because of the cost. However, forever showing his ignorance, he offered to do an endo and biopsy and my guess is he would make far more money doing that than a bone density. We did get permission for the bone density because of my husband body frame size so we'll see what that shows.

I am the Celiac in the family and I have been having bad feelings about the fact that my husband has symptoms himself. He is in partial denial and is fighting me on full blown testing but I recently put my foot down and told him we HAVE to get to the bottom of it, one way or another. I was 1 week away from a feeding tube when I was diagnosed so know what can happen and how bad it can get. He knows deep down there is a problem but is having trouble going 100% gluten-free. Oh yeah, did I mention the kidney stone problem he has also? Calcium oxalate stones too!

Even with all these suspicious symptoms, his doctor told him he doesn't have a gluten problem. This after 1 blood test and not a full panel. So if a topic could be discussed regarding ways to test for celiac disease, including a FULL panel and taking into account all those health issues that are related to celiac disease, we could make great strides in helping people get diagnosed. I personally think nothing will happen until a pharmaceutical company makes a pill for it because people are inherently lazy today about their food and want it quick and easy and gluten-free is not quick and easy, for the most part. It can be for those who accept the diagnosis and move on with it but for many, they can't wrap their head around not eating mainstream bread.

No one should have to fight with their physician for testing, especially on a disease that many doctors know nothing about. We have to open their eyes to all the other less obvious symptoms that add up to spell a possible case of celiac disease!

[buffettbride]

the folks at Open Original Shared Link are some of the nicest people I know. Maybe a "going green with Celiac" booth with some lunchboxes available for purchase?

[GFinDC]

Hi Cruelshoes,

Your husband sounds like a super model wannabee! 5'7" and 135 lbs is scary. I used to eat much more before I went gluten-free. Now I eat less and don't feel hungry. I feel lots better too, even have some energy. Hopefully the doctor will do a good job on the endoscopy and take multiple samples for review. I have read several times that people have been tested but not the full celiac panel. Probably another education point for the doctors there.

There really seems to be a disconnect in the US from Europe. I get the impression that many more people are tested for celiac in Europe. I have seen several sites that list related or associated diseases to celiac. It seems like that is a good place to start, testing anyone who comes in with an associated auto-immune disease. Seems like some of those 3 million undiagnosed celiacs might be hiding in those other autoimmune disease patients. From reading this forum, it seems very common to have an associated disease. Seems a shame that those people with RA, lupus, diabetes or whatever could also have celiac symptoms, but not know they could avoid them because they were not tested. Hmm, there's a possible theme phrase, "Find the 3 million!". 3 million celiacs, most of them undiagnosed. Sure seems like something worth trying to change.

[norine]

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