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floridanative

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floridanative Community Regular

Many on this board, including me, have expressed that we would never want most of our freinds and family to come on this site and read our posts, as they may not be so nice at times and could hurt the feeling of those we care for. Well something interesting just happened when I was searching online for gluten-free places to eat for an upcoming trip. My own post from here appeared about that town/visit. Now I had not said anything that would offend anyone but that is not always the case of course.

For instance, if one of your family members decdided to locate a place for you to eat while visiting with them, they could end up reading a post about how worried you are or that you're dreading the trip. Just thought I'd share what happened to me because I really was taken aback when I got a match that was a post of mine from this site. It's like we think we're just sharing with each other but of course we are sharing with the world.


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oceangirl Collaborator
Many on this board, including me, have expressed that we would never want most of our freinds and family to come on this site and read our posts, as they may not be so nice at times and could hurt the feeling of those we care for. Well something interesting just happened when I was searching online for gluten-free places to eat for an upcoming trip. My own post from here appeared about that town/visit. Now I had not said anything that would offend anyone but that is not always the case of course.

For instance, if one of your family members decdided to locate a place for you to eat while visiting with them, they could end up reading a post about how worried you are or that you're dreading the trip. Just thought I'd share what happened to me because I really was taken aback when I got a match that was a post of mine from this site. It's like we think we're just sharing with each other but of course we are sharing with the world.

Excellent point. I've always thought of the Internet as a completely public space. My kids were annoyed for years because I would not get a computer, then would not get on the internet. (We don't have television either) It's good to be reminded.

lisa

tarnalberry Community Regular

Yep. While some blogs have privacy filters, or at least filters that allow posts to not be indexed by search engines, this isn't a blog, and this doesn't have such a filter. It's always best to imagine that you're saying whatever you're saying to everyone you know now, and could meet in the future. It gives an interesting perspective on self-censorhip, I've learned the hard way.

ehrin Explorer

try googling your name, your friends names and your family members names

you'll be amazed at what you find!

CarlaB Enthusiast

Except that I have a very common name and there are thousands with it!!! Sometimes it's an advantage, usually it's a problem, like when trying to buy a house and suddenly my credit shows I owe thousands to someone ...

Carriefaith Enthusiast

That's a really good point. Anyone could read what we say here if they wanted and most of us have pictures so it's easy to tell who it is!

ms-sillyak-screwed Enthusiast

.


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schuyler Apprentice

I actually found this board by doing a search for gluten-free bread.

Thank goodness I did, because I don't know what I'd do without this board.

Guest BERNESES

I just googled my name and my hubby's and it turns out that he is deceased lead singer of Nirvana who just happens to have a cousin with my first name. Weird!!!!

Guhlia Rising Star

Thanks for the reminder... Now if only I could get a member of my family to actually do some researching on the subject!

Errrr... Becky, if you read this, I didn't mean you. :)

Idahogirl Apprentice

My mom has celiac and reads this site regularly, so that keeps me accountable. :D In fact, she is able to go to my user and read all of my posts! It makes me think about what I type a little more since I know I'm not totally anonymous!

Lisa

jenvan Collaborator

Oh, that's very true Tiffany! I had someone from my local Celiac group e-mail me that she found a post I wrote on a doctor....she was researching him. Another woman I didn't know found something I had written about a specific medication and e-mailed me b/c she just moved to my town. We had lunch together :) The internet makes it a "small world." I try to be consistent in character here online as I am in person so that I don't have to be worried about anything I write.

Rikki Tikki Explorer

I googled my first name and it took me to the page that had all the information about me. Now I am thinking I should change my sign on name for here. The problem is my name is so unusual. Any ideas?

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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
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    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
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