Tuesday, January 6, 2009

Monthly Follow-up Day




Liz said...

Jenny, I don't think leaving a comment regarding a gluten free diet would be obnoxious at all on those blogs. Just asking the question, and perhaps linking to some article, or the gluten connection book may turn on a lightbulb. There's no harm in trying to help (says the girl who often tries to get her mother to eat gluten-free with little results...)

Lynn Barry said...

WOW I am so glad to find your sites...thanks for leaving that nice note on my blog...HUGS

Mike said...

My doctor pretty strongly discourages her patients from doing too much internet research for exactly the reasons you're describing (though from my presence here you can see how well that's working). It's really hard to keep things in perspective, and especially with matters of the gut it's very easy to think yourself into feeling worse than you should. Call it Internet Intolerance.

The same logic applies to medical message boards as product review sites: the happier you are the less likely you are to post. So aside from the group of regulars that hang out in a given community the majority of the posts are probably coming from the people having the most trouble -- the sample doesn't match the general population very well. They are to Crohn's what Michael Phelps is to swimming. Just because you can swim too doesn't mean you should expect to win 8 gold medals for it.

That said, it also works the other way -- feeling well can be contagious too. I guess that's what we're doing here.

Jen said...

Mike you're so right on. The first time I went onto crohnsforum.com I was horrified at what I read, but it's so true that those that feel well don't waste the time on forums talking about their symptoms. That's why I like the gluten free community so much, it's generally a very positive atmosphere with a lot of support, not to mention endless delicious recipes!!!

Thanks Liz, I think you're right but I'm still not going to interfere, just try to focus on my own health for now.

Hi Lynn!! It never crossed my mind that I read your blog all the time but you didn't even know of mine haha, glad we connected!

Unknown said...

In general, people are way more apt to share a negative experience than a positive one. The same holds for this wacky series of tubes we call the net only more so because you are exposed to a vast array of people's stories rather than the one or two you would normally find. Know what I mean?

Unknown said...

I so relate to your not being able to find a doctor that understands the importance of a gluten free diet. Unfortunately, there is no drug rep for a gluten free diet so there is no one to pay for a double blind placebo controlled study. Plus, double blind placebo controlled studies really only work for drugs. Congratulations on healing yourself through diet--despite lack of support from the medical community. Research on the internet can drive one crazy, but it has saved my life and my son's life so I am okay with too much info. But it is amazing how many people won't even try dietary intervention but will do almost anything a doctor recommends. I know it is terrible to say, but I have come to believe people are just lazy and brainwashed to believe a prescription is the answer to everything.