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The Celiac Conference At Columbia 4-2-05


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#16 Canadian Karen

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Posted 31 March 2005 - 08:05 PM

Hi celiac3270,

Glad to hear you are going to this conference and will be posting back to us.

I would like to know if the medical establishment is going to be more "combined" with regard to celiac disease and all the related conditions and diseases that go along with it. When I mentioned to my family doctor that I would like to go to a specialist who I can go to who can fit all these auto-immune diseases together like a puzzle, she had no clue how to approach this. :blink: You have your GI for gastro, <_< your rheumatologist for arthritis, <_< your neurologist for neurological problems, <_< your endocrinologist for thyroid, <_< etc. but they are all blind to each other. :huh: Who can you go to to fit all this together for the best course of treatment? :unsure: I think that would be quite useful!

Karen
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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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#17 celiac3270

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Posted 01 April 2005 - 07:42 PM

Okay--I have all the questions written down in the notebook I'll also be taking notes in. In the situations where some of you asked multiple questions, I might not be able to ask all of them in the 20 min. Q & A period, but I'll try to phrase the questions in ways that...compress the most important information into them.

I will check tomorrow morning, but we have to be there by 8 sharp since my mom is doing the bloodwork then. So, though I doubt anymore questions will come by then, tomorrow around 6:15 will be the last time I'll check! So if you want medical professionals to answer your questions, post them now! :lol:
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#18 celiac3270

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Posted 01 April 2005 - 07:54 PM

Okay, I've summarized your questions into shorter, more compressed questions. Tell me if you'd prefer that I phrase your question differently than what is below:
  • How, if at all, is the medical community emphasizing to their physicians, the importance of testing for Celiac? Also, how is the medical community emphasizing that Celiac appears in so many different ways? After all, there are over 200 symptoms!
  • What vitamins should Celiacs be taking, in particular, those who went many years undiagnosed?
  • Do you think it will eventually become mandatory in the United States for doctors to screen children for Celiac?
  • Why are doctors sometimes so reluctant to consider celiac disease as a cause for a patient's problems? Additionally, can you explain the reluctance of doctors to order the simple blood test for celiac disease?
  • Can we somehow reduce the number of years it takes for someone to get diagnosed with celiac disease? [that would be raising awareness and educating doctors, I suspect]
  • Will the medical establishment be more combined with regards to Celiac disease and all the related conditions and diseases that go along with it? With all the related problems, many Celiacs need to see multiple doctors, who don't show much cohesion. Also, who can you go to to fit all this together for the best course of treatment?

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#19 Rikki Tikki

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Posted 01 April 2005 - 08:13 PM

Hi Molly:

There is a conference every year in California. It's at Stanford and they have some really good speakers. I think it's in October. I have been the last 2 years.
Let us know about anything new.
Thanks
Sally
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#20 Rikki Tikki

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Posted 01 April 2005 - 08:14 PM

Sounds good celiac3270, take good notes!
Thanks
Sally
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#21 Canadian Karen

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Posted 01 April 2005 - 09:12 PM

Good Luck! Blow them away with all our questions!!!! LOL! ;)

They'll take one look at you and think they are talking to Doogie Howser, M.D.!! :lol:

Karen
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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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#22 celiac3270

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Posted 02 April 2005 - 03:15 AM

All right, bye everyone! :lol: :) ;)
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#23 Canadian Karen

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Posted 02 April 2005 - 05:37 AM

Good Luck, celiac3270!!

Karen
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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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#24 celiac3270

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Posted 02 April 2005 - 03:26 PM

Thank you :)

I just got back and I typed out a very long post about it......and then I hit add reply and my connection starts to go and it didn't go through....lost it all
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#25 plantime

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Posted 02 April 2005 - 03:57 PM

AAAHHH!!! 8-pppppp!!! What a rip! Did you by any chance save it to notepad or wordpad? It gets to be a lot of work, retyping!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#26 flagbabyds

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Posted 02 April 2005 - 04:00 PM

I just got back too,
It was really good, I ate a lot as celiac3270 knows :) but there were some really good talks and it was really interesting, I took some notes, but I have to get up at 4:45 tomorrow to catch a flight home so I am going to sleep early and I will try to post them when I get home
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Molly

#27 celiac3270

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Posted 02 April 2005 - 04:00 PM

What do you mean by "8-ppppp"? I did write out 32 pgs. in a notepad, so it will take awhile to type out. Ugg...
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#28 celiac3270

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Posted 02 April 2005 - 04:04 PM

I just got back too,
It was really good, I ate a lot as celiac3270 knows :) but there were some really good talks and it was really interesting, I took some notes, but I have to get up at 4:45 tomorrow to catch a flight home so I am going to sleep early and I will try to post them when I get home

:lol: ...yep...the talks were fascinating...the teen cooking class...left much to be desired lol :lol: And about eating...haha...I thought I was eating a lot until you told me what you had had :D
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#29 plantime

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Posted 02 April 2005 - 04:16 PM

That's a "raspberry" to cpu problems! Look at it as eyes (8), nose (-), and tongue (pppp)!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#30 celiac3270

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Posted 02 April 2005 - 04:18 PM

Oh! :lol:
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