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The Celiac Conference At Columbia 4-2-05


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45 replies to this topic

#1 celiac3270

 
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Posted 29 March 2005 - 01:00 PM

Hi everyone,

You've probably seen the thread on the Celiac Conference at Columbia that Molly started (also in this section--Coping with). It will take place this Saturday and there will be many physicians speaking. Today I went to my GI doctor (Joseph Levy) who is with Columbia Presbyterian and, I learned, is going to be speaking there from I think 10:30-12:30 on "Getting real with the gluten-free diet." A sidenote of good news: my weight went from way off the charts (low) to being in the 10th percentile in one month (12 pounds)!

I said in the other post that I would try to take good notes and then share on here so that even if you can't go to the conference, you can at least feel like you did ;) . Also, if anyone has questions that they'd like me to ask for them I could do that and post back the replies--on the oats controversy, etc.

I'll write down any questions you mention here and I'll check until Saturday morning, about 6:00 AM (Eastern time)...

-celiac3270
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#2 plantime

 
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Posted 29 March 2005 - 01:41 PM

I don't have any questions. I just want to say thanks for going and taking notes for the rest of us.
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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

#3 flagbabyds

 
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Posted 29 March 2005 - 01:50 PM

i'm flying out to new york tomorrow to go to the conference, all the way from california. I'll also take notes :)
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Molly

#4 KaitiUSA

 
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Posted 29 March 2005 - 02:14 PM

I have no questions either but just post whatever notes you take or anything you find out...thanks for doing this celiac3270 :D
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#5 minibabe

 
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Posted 29 March 2005 - 08:31 PM

I know that this my sound stupid......but where is columbia, is it columbia University, I am on Long Island and if it is close I would love to attend it. Thank You.

Amanda
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#6 judy05

 
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Posted 29 March 2005 - 09:21 PM

celiac3270,

Thanks for doing this. I would like to know if and how the medical community is doing to educate their physicians, both in school and out, on paying more attention to and testing more for celiac and gluten intolerance. They all need to be aware that there are over 200 symptoms and we are not all skinny little children with distended abdomens and diarrhea. Why can't the population be screened with a blood test at an early age or when symptoms appear, which goes back to them knowing the symptoms...Thanks <_<
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#7 darlindeb25

 
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Posted 30 March 2005 - 02:17 AM

;) i do have one question celiac3270----ask about celiacs and neuropathy and what vitamins they feel are necessary for us to be taking, especially us that went years without diagnosis--otay---i would be very interested in that question-----------by the way, anyone interested--Dr. Green will be talking at the suffolk county celiac support meeting on tuesday april 5th--em me for the location if you would like to go---deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#8 debmidge

 
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Posted 30 March 2005 - 02:52 AM

celiac3270, Thanks for taking the time to attend this conference. I have comments that could be made into questions.

1) will someone in medical field make it mandatory for doctors to screen children at a certain age for the anti bodies?
2) will someone in medical field convince GP's and gastros to test for celiac disease even if the doctor feels it's unlikely that the patient has this, like in the instance of someone who has IBS that goes unrelieved with diet for IBS and loss of weight.
3) can we somehow reduce the number of years it takes for someone to get diagnosed with celiac disease?
4) Why are doctors so reluctant to consider celiac disease as a cause for a patient's problems?
5) Will doctors be trained in spotting celiac disease? Will someone in medicine run a special Continuing Education program for this? Will it be mandatory? It should be...
6) can someone explain the reluctance of doctors to order the simple blood test for celiac disease? They react as if someone was asking for an MRI....

Thanks, Debbie
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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

#9 celiac3270

 
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Posted 30 March 2005 - 06:00 AM

Amanda, the conference is at Columbia Presbyterian up around 165th. It is close, but unfortunately, even the extended deadline ended on March 25th. Perhaps e-mail the person who is organizing the event, since they didn't seem to be filled up at all. Here's the e-mail: cb2280@columbia.edu...and the link to sign up is here: go to the second one down, I think: the regristration page

Deb--that's a very good question...

Judy--I wrote your's down also.

Debbie, I think the questions you have can (in some cases) be rolled together...I'll post replies to both of your questions.

And anyone w/ q's...post them before Saturday morning!
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#10 debmidge

 
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Posted 30 March 2005 - 01:44 PM

Thank you!
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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

#11 plantime

 
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Posted 30 March 2005 - 03:51 PM

So two of you are going! Cool! Post notes for us!
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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

#12 bklyn

 
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Posted 30 March 2005 - 04:05 PM

celiac3270 - My two daughters who live in NY will be attending. I signed up but I'm not feeling up to attending. One of my daughters is getting tested, the other is going to attend Dr. Green's speech. Will you be wearing name tags?
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Kathy C.
Ft.Lauderdale, Fl.

#13 celiac3270

 
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Posted 30 March 2005 - 06:13 PM

Oh...I don't know if they have nametags. If so, then yes--and if you see someone wearing a "celiac3270" nametag, it's probably me! :lol: Are you sure you won't make it? :) There are still two days before the conference.
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#14 minibabe

 
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Posted 31 March 2005 - 10:09 AM

celiac3270 thank you so much. I just emailed them and I really hope that they can get back to me, because I would really like to attend this. Thank you so much again, I really appericate it.

Amanda
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#15 celiac3270

 
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Posted 31 March 2005 - 03:13 PM

With the questions about physician awareness arising, here's an article:

http://www.celiac.co...l?p_prodid=1132
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