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Advancing celiac disease One Person At A Time


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6 replies to this topic

#1 debmidge

 
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Posted 18 September 2006 - 01:54 AM

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.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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#2 Guest_nini_*

 
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Posted 18 September 2006 - 03:47 AM

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!)
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#3 debmidge

 
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Posted 19 September 2006 - 01:30 AM

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.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#4 moonunit

 
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Posted 19 September 2006 - 07:22 AM

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!
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Diagnosed + via Enterolab, + via serology, - by doctors
gluten-free since August 2006 (with a test run from March-June)

#5 debmidge

 
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Posted 21 September 2006 - 01:35 AM

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."
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#6 eKatherine

 
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Posted 21 September 2006 - 01:43 AM

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.
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#7 Canadian Karen

 
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Posted 21 September 2006 - 01:46 AM

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!

:P :D ;)
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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