Advancing celiac disease One Person At A Time

[debmidge]

To those who don't know my situation, my husband has celiac, I don't. But that doesn't stop me from caring about those who deal with celiac disease just like my husband.

I was in of all places on Saturday, an Italian restaurant, alone grabbing something to eat before I finished my errands and it was empty at lunch hour; I sat chatting with the waitress. She asked me if I was married, had children, etc. She was busy folding cloth napkins but was free to chat. I told her a bit about myself and when asked if my husband would come to restaurant and eat there and I replied that it wasn't the best choice for him due to celiac disease.

She inquired as to what celiac disease was and I had time to explain; her eyes widened and she stated: "I have had test after test for my IBS and the Dr. still can't tell me what's wrong." She further stated that she is anemic, low Vitamin B levels, gets foggy headed and dizzy; has osteoporosis and of course diarrhea. She stated that since she works at restaurant & her meals are free all she eats is pizza and pasta dishes.

I got her home address and I will send her the official brochure from the Celiac Assoc. Of course I told her to get tested. But as with many, it just might come down to a case where going gluten free will resolve her issues whether she tests positive or not.

One of the websites I always give out is Celiac.com and this Message Board. If anyone has other sites that they want me to share with her, please let me know.

[Guest nini]

this is the best website by far and lots of useful info on the forums too... but you can always refer people to CSA Celiacs I think it is csaceliacs.org that is the main page for the national support group and it's local chapters. For kids you can refer them to R.O.C.K (raising our celiac kids) info for that is on Celiac.com (thanks Scott!)

[debmidge]

I always approach with statement "Have you considered that it could be celiac disease?" I don't say it's definitely celiac disease as that's too presumptive. But in many cases eyes light up when I review symptoms with them.

I am giving her booklet fromt the CSA which I purchase for these occasions.

[moonunit]

That's awesome, being proactive and talking to a stranger like that! I am trying to learn to be so brave myself.

Also, I'm hoping to put together an article to try to increase awareness along those lines on the Gather site (link in my sig). Something that gets people thinking about how it might be POSSIBLE that their symptoms have a reason and aren't all just random.

Does anyone know if there's a simple information sheet to give people who have never considered the possibility of celiac before? When I talk to people about my own situation I nearly ALWAYS hear that someone shares (or knows someone who shares) symptoms that sound the same, but I nearly ALWAYS hear "but it couldn't be that." And then they never investigate further.

What can we do to get people to at least find out? And what do we do when they go to a doctor who says "nah" before they bother taking a history or doing an exam, as some doctors still do?

Aughhhh, it gets frustrating to think about! We need a gigantic celebrity to publicize the facts, like it says on the other thread. Sigh, there's got to be SOMEone!

[debmidge]

Yes another million or more to go....gave me a silly thought. Perhaps we should organize and go door to door like the political or religious groups do.

"Hello, my name is Deb and he's Mike. We're out here today to talk with you about the gluten free plan. Here's our brochures ... we want to help you maintain good health. Have you ever considered going gluten free? Our mission is to instruct those who need to go gluten free and don't know it."

[eKatherine]

That's awesome, being proactive and talking to a stranger like that! I am trying to learn to be so brave myself.

Also, I'm hoping to put together an article to try to increase awareness along those lines on the Gather site (link in my sig). Something that gets people thinking about how it might be POSSIBLE that their symptoms have a reason and aren't all just random.

Does anyone know if there's a simple information sheet to give people who have never considered the possibility of celiac before? When I talk to people about my own situation I nearly ALWAYS hear that someone shares (or knows someone who shares) symptoms that sound the same, but I nearly ALWAYS hear "but it couldn't be that." And then they never investigate further.

It would be really cool to have an "Introduction to Celiac & Gluten Intolerance" in the form of a Word .doc ready to print up into a brochure on standard paper. It would be easy to carry around, and anyone who was interested in doing so could edit a paragraph or two to include a bit about their own experiences.

[Canadian Karen]

Yes another million or more to go....gave me a silly thought. Perhaps we should organize and go door to door like the political or religious groups do.

"Hello, my name is Deb and he's Mike. We're out here today to talk with you about the gluten free plan. Here's our brochures ... we want to help you maintain good health. Have you ever considered going gluten free? Our mission is to instruct those who need to go gluten free and don't know it."

OMG! that's hilarious! That would be as irritating as the Jehovah's Witnesses who are always knocking on my door! Hey, maybe we could don white robes and hand out out fact sheets at airports like Hari Krishnas!