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Columbia Conference


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20 replies to this topic

#1 flagbabyds

 
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Posted 20 February 2005 - 09:13 PM

I was was wondering if anyone is going to this, I am, April 2nd and register @
Just wonderingCeliac DIsease Center
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Molly

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#2 darlindeb25

 
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Posted 21 February 2005 - 03:27 AM

:( i would love too, but i work on saturdays and since it is a new job i dont feel i can request time off---anyone that goes can fill us in--otay----deb :lol:
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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!

#3 celiac3270

 
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Posted 21 February 2005 - 06:58 AM

That's so cool! Thanks for posting it--I sent the link to my mom and I think I can go :). It might be very interesting and I'll make sure I take scrupulous notes or save brochures so I can share all the information here.
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#4 angel_jd1

 
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Posted 21 February 2005 - 07:32 AM

The only activity that I see on the 2nd is a screening fair. Am I missing something?? -Jessica

I only found this:

April 2, 2005

Celiac Disease Centerís Family Screening Fair
Date: Saturday, April 2, 2005
Time: 8:00 a.m. Ė 5:00 p.m.
Location: Columbia University Medical Center
701 West 168th Street,
Hammer Building
4th Floor
New York, NY 10032

Contact: Cynthia Beckman, Director of Development, Celiac Disease Center
Telephone (212) 342-4529 Fax (212) 305-6443 Email: cb2280@columbia.edu

Registration:
Registration will be online beginning February 10 at www.celiacdiseasecenter.columbia.edu on the Calendar of Events page.

YOU MUST REGISTER ONLINE ON OR BEFORE MARCH 15 TO PARTICIPATE. The cost is $25 per person and includes screening, test results and the activities as outlined in the agenda. Register early--the screening slots will fill quickly.

Click here to view the agenda
Click here for a printable pdf of the agenda

Because celiac disease is hereditary, family members--particularly first-degree relatives--of people who have been diagnosed should be tested for the disease. About 10 percent of an affected person's first-degree relatives (parents, siblings, or children) will also have the disease. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. We advocate people with celiac disease should have annual monitoring of serologies. Family members should be screened with serologies every three to five years.

We invite you to join us and take advantage of this important opportunity to be screened for celiac disease. Registration for the Celiac Disease Centerís Family Screening Fair will begin the week of February 10, 2005 at www.celiacdiseasecenter.columbia.edu. The registration fee includes screening for celiac disease, test results, educational sessions, entertainment for children, cooking classes for teens, vendor exhibits and food sampling.

For additional information about this event, please contact Cynthia Beckman, Director of Development, at cb2280@columbia.edu or (212) 342-4529


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Jessica
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#5 flagbabyds

 
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Posted 21 February 2005 - 08:38 AM

YOu have to click on the calendar of events and then you can get the pdf agenda and there are a lot of talks and discussions.
I'm flying out from California on Wednesday and leaving on Sunday and going with my sister who is getting the screening, it's going to be really fun
Wow I keep editing this, ok it is a screening fair but you don't have to get the screening done, there are also talks and sessions if you look on the calendar of events

Edited by flagbabyds, 21 February 2005 - 08:43 AM.

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Molly

#6 stef_the_kicking_cuty

 
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Posted 21 February 2005 - 12:12 PM

Does anybody know, how the screening will be done? Blood test??? And do you need more than one person from one family since it said family screening???

Hugs, Stef
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#7 flagbabyds

 
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Posted 21 February 2005 - 02:06 PM

you don't have to have more than 1 person it is just reccomended so you can get your whole family tested, and i think that it is done by blood but i'm not sure, you can email the lady if you want to know
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Molly

#8 flagbabyds

 
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Posted 26 February 2005 - 08:13 AM

I just registered! It's going to be so interesting and fun!
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#9 celiac3270

 
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Posted 26 February 2005 - 08:21 AM

No--you don't need more than one person. It's just marketed that way. My mom and I both registered last night--she's going to do the screening even though she's tested negative for celiac in the past because she seems to have symptoms that match up with celiac: hypothyroidism, bloating/distended stomach after eating particularly gluteny foods, etc.

If you register, you have the option to do the blood screening, for which you need to pick a time frame, such as 8:00-8:15, 8:15-8:30, etc. in which you would like to do the test. I'm not getting tested, obviously, but I'm doing the other option you need to sign up for, the "teen cooking" thing, which you also need to pick a time for: a morning one or an afternoon one at 2:30. Then there are people talking throughout the day--you listen to whichever talks you want and they have a Q and A section after each...lecture? speech? whatever they call it.

To answer your question--simply, get as many people from your family tested as you want--or none.....
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#10 flagbabyds

 
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Posted 26 February 2005 - 09:09 AM

I'm not getting tested either... But my sister is even though she has been doing mostly gluten-free, she wants to get tested again, because her Biopsy was negative, but she feels better on the diet. I'm doing the afternoon teen cooking, all teens who are going should do this one ;)
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Molly

#11 celiac3270

 
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Posted 26 February 2005 - 09:52 AM

I'm also doing the afternoon teen cooking....yay, I'll meet somebody else from the board! :) Then I'll be able to put a face with the name :P

If your sister is on a nearly gluten-free diet, though, she probably won't get accurate blood results, but I guess if it comes free with going to the event and it only takes a few minutes, it can't hurt.
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#12 mela14

 
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Posted 26 February 2005 - 07:22 PM

now that I am officially here in NJ I will probably register to go! I just oed in today....everything is in boxes but got to my lap...yeah!

I really need you guys now! I am soooooooooo sick. I have been officially glutenized to the max! I am going to post a new topic just to keep things straight...but the bottom line is I bought a whole rotisserie chicken in Wegman's and am deathly ill from it! I spent an hour crying in the bathroom and feeling like I was poisoned! My gut is raw and painful and distended. I am in AGONY!
I had this same chicken at this same Wegman's 3 weeks ago and did not get sick. I specifically went to this store . the label said whole chicken...nothing else...no added ingredient. . I spoke with the cook and she said nothing was added............. I walked out of a different store that I had gone to before this store because the chicken they had was full of "bad" ingredients!

I am getting worse! I just flew in last night and was still suffering from the Lays Potatoe chips and now this. I did NOT eat on the airplane and had a banana for breakfast....so that wasn't it. I ate the chicken and immediately got sick.......... I had a baked sweet potatoe with it but it wasn't that. I microwaved it myself so it couldn't be that. I ate nothing else! it's not 7 hours later and haven't been able to eat. I feel so ill........

If my stove would have been connected this might not have happened. I had workers in my house during the week and the kitchen should have been in order. I get here only to find my stove in my dining room along with my frig. The ony place that I felt safe to go to was Wegman's and now this. The workers are back tomorrow at 8:00am to do the floors in the kitchen. After that I will have my kitchen back.

So much for a smooth move! I should have stayed in Florida. I am so depressed and still in so much pain.

Help! I thought about slitting my wrists today. I can't do this anymore!

I have so much to do this week and just want to lay down and rest. Make the world go away!


I'll have to call my new GI and move my appt up. At this point he might as well do the biopsy that I've been avoiding............I really need to be sedated (just to get some rest)....even if for a little while. Maybe I won't wake up ...won't that be an added bonus.

So much for putting this in another post. I got it all out right here.

oK.the migraine is setting in and I don't know how I will be able to sleep from this pain..........I dare not even take anything for it.
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Mel
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10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#13 irishchick04

 
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Posted 26 February 2005 - 10:18 PM

Wow. I wish I could go to this. Luckily it sounds like the people who are getting to go will be able to give us a full review.

Mel,
Hang in there. I know how you are feeling. I just spent the last hour crying on the phone to my mom because I have been feeling so sh*tty.

I had to go on a four day field trip with my college class and I accidently got gluten the day before and I had the worse reaction while I was on the trip. It is so <i>not</i> fun to be out in the field doing research and suddenly need to use the bathroom for like four hours. I know what you mean when you say you feeling like slitting your wrists. But believe me, that's not the solution.

Just hang in there. It's so hard sometimes (actually ALOT of the time). I often feel like I just can't win but you just gotta keep putting one foot infront of the other.

Good luck!
Caryn
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#14 KaitiUSA

 
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Posted 27 February 2005 - 04:36 AM

I think I am going to go too my parents seem interested in taking me but I'm not 100% sure if I'm going yet. I hope to :D
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Feel free to email me anytime....jkbrodbent@yahoo.com

#15 celiac3270

 
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Posted 19 March 2005 - 05:42 PM

The registration deadline for this event has been extended to March 21st. So for anyone who has an interest in going and hasn't registered--you still have two more days!

Kaiti, are you going?
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