Are Celiac Groups Ruining Their Credibility?

[truckergordon]

In the US we have seen many examples of the unethical practices of businesses, the corruption of leaders in reputable nonprofits, and the spiraling of our economy. We seem to be a society of self-righteous, greedy people who are

[captaincrab55]

truckergordon, That was some "First Post".... The first site I visited (after finding out I had Celiac Disease)wanted a registration fee and monthly to yearly fees for what one can find here for free.. I for one will support this site.

BTW, Tell us something about your connection to Celiac Disease

[Tim-n-VA]

I don't really care. 180% of average salary is almost a worthless statistic. There are so many factors that could justify salary variation it is impossible to evaluate. Tell me the ratio of admin and fundraising costs to "direct benefit" costs and you might have something meaningful.

[ravenwoodglass]

If you want to be generous and donate in a way that will for sure help those in the celiac community how about instead of spending your time researching and looking for 'problems' in the organizations you instead take that cash, go to the store, pick up gluten free items and deliver them to your local food bank. You won't be stressing yourself out and mud slinging and you would be helping folks who may desperately need it.

[Jestgar]

not-for-profit is not volunteer.

You made a lot of statements and yet offered references for none of them. If you want people to really take you seriously you'll need to give us links to where you got your information.

[jststric]

are you being a part of any kind of solution or are you simply stirring the pot? At least offer up some very real solutions that everyday people can do. This world is way too politcal now. We don't need more.

[lovegrov]

If you want to be taken seriously you need to provide more information. For instance, what the heck are you talking about with CSA? I'm not a CSA fan but it's impossible to come to any conclusions from what you posted.

New to the celiac community? What does that mean? Do you have celiac?

richard

[RideAllWays]

Did you just throw this together out of your own opinions and thoughts? I would like to see references and quotes before I can take this seriously. It seems like you may have posted this on more than one celiac board, and yet I'm not totally sure what your point is. Donating to celiac research organizations isn't much different than donating to diabetes, cancer research...there are always going to be scams. Without concrete facts or any comparisons nobody can really know what you are hoping to get out of this.

And your connection to celiac is?

[JNBunnie1]

BTW, Tell us something about your connection to Celiac Disease

One.

If you want to be generous and donate in a way that will for sure help those in the celiac community how about instead of spending your time researching and looking for 'problems' in the organizations you instead take that cash, go to the store, pick up gluten free items and deliver them to your local food bank. You won't be stressing yourself out and mud slinging and you would be helping folks who may desperately need it.

Do you know of any food banks which are willing to save gluten free food for those that need it? Last I checked, most simply have a first come first served policy. It'd be great if there were any that did. Might be easier to find those in need here.

New to the celiac community? What does that mean? Do you have celiac?

richard

Two.

And your connection to celiac is?

Three.

Are we now requiring membership cards? Does someone need a Celiac handstamp to share perfectly valid concerns about how organizations that are supposed to represent OUR interests are run? I don't have cancer, but I can tell you I have grave concerns over how the American Cancer Society is run. I'm not going to keep my mouth shut just because I'm not part of the club. Last I checked, these organizations are willing to take donations from anyone, which means they should be willing to take questions from anyone, and so should we.

[Lisa]

Unless the original poster is a "troll", Board Rule #5 suggests that a post should be supported by documentation or clarified as personal opinion. "a troll is often someone who comes into an established community such as an online discussion forum, and posts inflammatory, rude, repetitive or offensive messages designed intentionally to annoy or antagonize the existing members or disrupt the flow of discussion"

Opinions are welcome. Unsupported claims about the inept abilities of specific organizations are discouraged, according to Board Rules.

https://www.celiac.com/gluten-free/index.php?act=boardrules

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.

[ravenwoodglass]

Do you know of any food banks which are willing to save gluten free food for those that need it? Last I checked, most simply have a first come first served policy. It'd be great if there were any that did. Might be easier to find those in need here.

I certainly don't object if they give the items that are specifically labeled gluten free to other folks that are hungry. If they run out of regular pasta then giving the gluten free items I donate to those that want them is fine with me. What I donate the most when I can is pet food and I don't donate anything I cannot eat with the exception of items that were purchased and I then found out were not safe.

If the original poster wants to post the type of stuff they posted they should have backed up what they said with links to the information. To try and cut apart an organization without providing links seems very much like someone with a attitude rather than someone who is genuinely concerned to me. Perhaps I would feel differently if this wasn't the first and only post from this 'source'.

[ravenwoodglass]

Unless the original poster is a "troll", Board Rule #5 suggest that post should be supported by documentation or clarified as personal opinion.

Opinions are welcome. Unsupported claims about the inept abilities of specific organizations are discouraged, according to Board Rules.

https://www.celiac.com/gluten-free/index.php?act=boardrules

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.

We were both posting at the same time. I must say you worded your response much better than I.

[truckergordon]

1. 990 reports of all nonprofits are posted on www.Guidestar.org. Anyone can see them and see how they report their money.

2. Based on figures found on each organization

[lovegrov]

I like GIG (www.gluten.net) but can't say I've done any real due diligence on them. However, when I was trying to learn how to deal with celiac, they were a voice of reason. Cynthia Kupper is the person who worked with Outback and others to come up with a gluten-free menu and GIG started the product certification program and they took over the GFRAP program. Meanwhile, CSA was the organization that used to warn that every other ingredient in the world was dangerous, and a former CSA president also tried his best to sabotage the allergen bill.

richard

[lovegrov]

Are we now requiring membership cards? Does someone need a Celiac handstamp to share perfectly valid concerns about how organizations that are supposed to represent OUR interests are run? I don't have cancer, but I can tell you I have grave concerns over how the American Cancer Society is run. I'm not going to keep my mouth shut just because I'm not part of the club. Last I checked, these organizations are willing to take donations from anyone, which means they should be willing to take questions from anyone, and so should we.

[captaincrab55]

We've always asked people to tell us what their association with celiac is. No, it's not a requirement, but it just makes common sense. And then when somebody's first post is along the lines of truckergordon's, radar goes up among people with years of experience in Internet groups.

richard

[ravenwoodglass]

1. 990 reports of all nonprofits are posted on www.Guidestar.org. Anyone can see them and see how they report their money.

2. Based on figures found on each organization

[ChemistMama]

"I am not interested in supporting research as much as I am interested in supporting the front line organizations who support people on a daily basis. They are the people making the biggest impact on a daily basis."

In my opinion, the people who support others on a daily basis are those workhorses in our local celiac support groups. The main person in our support group organizes meetings, gives help and food to those newly diagnosed, and goes out of her way to help and support those who are lost in the sea of information.

Find and join a local group (that you like!). Contribute to help to pay for professionals to give talks at meetings. Offer to pay for the printing of the chapter's newsletter (which I've found to be very helpful to those celiacs withtout email access). Your hard work (and cash!) will be greatly appreciated.

[emorgan816]

My parents volunteer at a food bank and I asked about gluten-free items. I was told that no one looks at the packages when they bag them up to deliver them to the needy - they just throw the stuff into a bag and go. So, my gluten-free items are just going to anyone and not to those who may need gluten-free items.

[mushroom]

When I cleaned out my kitchen to leave and come back home I called our local food bank and asked if they had celiac families they supported. They said yes, and I said I had food to donate but wanted to specify that it should only be given to the gluten intolerant. They were delighted to cooperate.