What About Blogs?

[acousticmom]

I've been listening to The World Is Flat by Thomas Friedman. It's basically about globalization and how it's changing everything for individuals and corporations. (How can I possibly summarize a book that takes 19 hours to listen to? I'm only one-third of the way into it, but it's still very insightful.)

Now, it's obvious that the Internet is changing everything, especially for all of us who have found many more answers here than at the doctor's office. The little guy is getting empowered with information and technology like never before.

So it's got me thinking. I cheer every time a mainstream publication presents some info on celiac, but those events are few and far between. Meanwhile, I did a quick search on "food intolerance" among blogs, and there are tons of people blogging about intolerance issues. Since this is one area fraught with misinformation (i.e. diagnosing wheat allergy without considering the possibility of celiac), what might happen if celiacs started spreading solid info among bloggers? It wouldn't be spam if it's on-topic, and it's targeted to people who are already searching for answers. . . . It might create a lot more annoying questions for doctors, but hey, if people have accurate info, I think such a grass-roots effort could reach far and wide.

Has anybody already been doing this?

Carol

[tarnalberry]

I know there are at least three blogs out there (one from a woman in Seattle!) about being gluten-free. They don't get a whole lot of publicity, but they're out there. If I find the links, I'll post them. One of our members has a blogger blog as well, I believe.

[queenofhearts]

I found this list on a Celiac listserv; I've been to several & they're interesting.

Leah

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And others ... not as frequently blogged to, but still interesting, good info:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link (brand new)

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[jayhawkmom]

I've actually see the GlutenFreeGirl on the Food Network.

HOOORAY for her being out there and discussing the gluten-free lifestyle and calling attention to it!!!

*CHEERS!*

I admit, I've started a tiny little "myspace" page as a way of coping. But, it's a work in progress - coming along very slowly.

[eKatherine]

Whoo, thanks for the link to my blog.

I have found that there are very few celiac or gluten-free blogs in the directories I have looked at or submitted to. More people need to write public blogs about their experiences and opinions about celiac, gluten intolerance, and the gluten-free lifestyle. Then they need to submit them to directories and trade links to try to get exposure for them, which can bring awareness to the public. It would be cool to put together some kind of clearinghouse for this sort of writing, hmm...

The majority of health blogs are unfortunately simply either repetitions of standard medical advice that doesn't work or unproven systems that somebody's trying to sell. Surfing through a directory recently I saw lots of IBS blogs recommending anything but going gluten-free, menopause blogs recommending hormone treatment as a cure-all, etc. I wrote some comments in these blogs, why not?

[acousticmom]

Surfing through a directory recently I saw lots of IBS blogs recommending anything but going gluten-free, menopause blogs recommending hormone treatment as a cure-all, etc. I wrote some comments in these blogs, why not?

That's what I'm talking about--joining the conversations that are "out there" (especially if they're not all that accurate) and offering links and info where they might be helpful. So many people network through blogs & myspace sites, the ripple effect can be incredible. Which is why blogs are touted as such a powerful marketing tool these days.

It would require kind of an outreach mindset. Whenever I'm online, it's a very self-serving activity: finding answers to my questions, communicating with the people I want to keep in touch with, etc. Instead, I'd have to spend some time looking for people who would benefit from the info I can offer, wading through some blogs that may not otherwise interest me. If a bunch of us did that, even occasionally, it could really help educate the public about celiac. And then, if I can refer people to my blog or my celiac friend's blog, they can get even more links and info if they choose. This is a huge networking opportunity. We don't really have to sit and wait for the mainstream media to do the PR for us.

Oooh--and now I'm dreaming, but a grassroots awareness of celiac could really drive consumer demand for gluten-free products and restaurants much faster than if we wait for doctors to start diagnosing more of it at their own speed. Sites like this one are already promoting a grassroots awareness, of course, but people have to come here to get the info, and they might not even know what questions to ask or what to search on. Talking with the right bloggers could turbo-charge the whole public education process.

Carol

[lorka150]

i recently started my site,but it's mainly for recipes. however, i could do an attachment if people wanted to write their 'stories', i would like every one's. it would make for good reading!

[eKatherine]

i recently started my site,but it's mainly for recipes. however, i could do an attachment if people wanted to write their 'stories', i would like every one's. it would make for good reading!

So lorka, trade links?

[lorka150]

sure, i would love to link you! (if that's what you meant?)

edited: i linked you, but on mine i often linked people's names. what do you want me to link you as? thanks!!!

[marciab]

I am ashamed to admit that I have no idea why a blog might be better than this message board.

Do people access them more often ? I see what a blog is, but how would I ever know to go there if you hadn't given me the link ?

I keep referring people on the immune support board over here. I was possibly misdianosed with CFIDS/FM 16 years ago, so there are probably others with other illnesses that are misdiagnosed. Or at least could benefit from the diet. Autism ? Parkinson's ?

I found the word gluten when searching for wheat free bread recipes. So, this link already exists. Any ideas on how we could capitalize on that ?

[eKatherine]

I am ashamed to admit that I have no idea why a blog might be better than this message board.

Do people access them more often ? I see what a blog is, but how would I ever know to go there if you hadn't given me the link ?

I keep referring people on the immune support board over here. I was possibly misdianosed with CFIDS/FM 16 years ago, so there are probably others with other illnesses that are misdiagnosed. Or at least could benefit from the diet. Autism ? Parkinson's ?

I found the word gluten when searching for wheat free bread recipes. So, this link already exists. Any ideas on how we could capitalize on that ?

Blogs are out there for general readership, while this is a closed group - not that it isn't open to the public, but you have to seek it out to find it. When you're browsing blogs, either by following links or surfing in directories, you can find all kinds of stuff you never imagined.

[acousticmom]

I keep referring people on the immune support board over here.

That's awesome! Now you're reaching the kind of people who wouldn't think to look at this site, because they've never heard of gluten, let alone celiac.

Whether we're participating in other symptom-related forums or meeting bloggers who share whatever symptoms we had pre-diagnosis, it's the mindset of trying to help other people that makes it work. And there are so many really caring people on this forum, I'm just suggesting that we actively look for opportunities to meet the people who might not otherwise find their way here.

Since you mentioned CFIDS, I Googled "CFIDS blog" and found a guy who writes about his experiences living with CFIDS and some weird rash and a "cloudy head". (That much is true. I haven't written him yet, so the rest of this scenario is hypothetical.) He may never heard of celiac disease, or know that he should be screened for it. He's tried many things to cope with CFIDS, none of which solve the problem. So if I add a comment on his blog that sometimes gluten intolerance can cause the same symptoms, and suggest he checks out this site to see if he thinks there might be a connection, it might help him toward a real solution. Him, and some of his CFIDS-afflicted readers, and some of their families and online acquaintances, and so on. Same scenario, of course, for forum involvement.

This kind of information sharing happens naturally all the time on the Internet. What I'm suggesting is picking up the pace by deliberately looking for opportunites to meet the people who may be helped by the info we have. I'm not talking about spamming or foisting unwanted advice on anyone, just extending the same caring we see here to the rest of the world. If we did that, I really believe we could turbo-charge public awareness. The information is already available; all we need to do is help direct the right people to it.

And as more celiacs get diagnosed, they'll write in blogs and forums about how their symptoms went away or improved with the gluten-free diet, and then celiac gets "seen" in lots more places online. In that way, the growth of public awareness could be exponential. This is bound to happen eventually, just because of the way the Internet works. But I suspect a lot of us would like to see it happen sooner rather than later. And it's so easy, too. Compared to the days of spending huge amounts of money on TV or print ads to get your word out, the Internet makes it ridiculously easy.

Carol