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The Celiac Conference At Columbia 4-2-05


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#31 Canadian Karen

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Posted 02 April 2005 - 04:55 PM

Oooooohhh, if that was me, I would be going:

:angry: @#$#@%&*&%#@$#$#$#$$#*(!!!!!!!!!!!!!!! :angry:

Karen :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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
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"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."
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#32 Rikki Tikki

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Posted 02 April 2005 - 05:07 PM

I would be doing the same thing :angry: But, I can hardly wait to see what celiac3270 has to say! :D
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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

#33 celiac3270

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Posted 02 April 2005 - 07:33 PM

I know! :angry: It's so frustrating and it always happens when I type long posts (not the short ones that I don't care about <_< ). It's too frustrating to write the same thing twice...and I'm too tired right now -_-
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#34 Rikki Tikki

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Posted 02 April 2005 - 08:43 PM

Ok celiac3270:

Get some sleep, sweet dreams.

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

#35 celiac3270

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Posted 03 April 2005 - 11:26 AM

The following talks were given. The ones I went to are in bold, except for the last one in bold, which my mom took a few notes on for me:
Celiac Disease Primer (Dr. Green)
Whole Foods Shopping Wise (Janet Lasky)
Let's Get Real About the Gluten Free Diet! (Dr. Levy)
Serologic Diagnosis (Vijay Kumar)
Amazing Grains (Anne Lee)
Research Leading to Therapies (Dr. Green)

I didn't go to the Whole Foods one because I would have had to skip Dr. Green's Primer or go to the Primer later in the day and miss Anne Lee's talk. Besides which, I haven't been to either of the Whole Foods in NY yet, so I don't really need that information...yet.

I also went to a teen cooking class in the afternoon...but there isn't too much to say about that. We made pizza using a mix from the gluten free pantry. It was't bad at all, but I prefer Chebe and the Gluten Free Pantry mix took forever to make and was messy. It was one of those where you had the mix, yet you still needed to add eggs, water, oil, yeast, salt, etc...then let the yeast rise and then make it into a crust and then add the sauce and the toppings.... On the other hand, with Chebe, which I like better, anyway, it's much quicker and with fewer ingredients.

To really summarize each discussion (since there was so much said at each): Dr. Green's Primer was fascinating. He basically covered everything except for information about reading labels and such. He discussed celiac awareness in the US and why it isn't very well-known here despite so many people having it. He discussed what happens to the small intestine, how symptoms relate to GI damage, and he showed pictures of normal and destroyed villi. He discussed that man wasn't meant to eat wheat, the genetic tree of grasses, genetic factors of celiac, how to best prevent celiac disease, prevalence, why it's undiagnosed, the pathophysiology of celiac disease, how to test, a graph of what symptoms people had had that he had diagnosed, explained silent and classical celiac disease, some strange celiac symptoms that were being researched, related disorders, the clinical spectrum of Celiacs, antibodies, management, etc. You can see why it would've taken me forever to type it all up! :o

Dr. Levy discussed coping with the gluten-free diet--it's really about when people are diagnosed, so it didn't really apply to me. He explained that it's not easy, that there are 4 reactions people have to diagnosis, how to manage the news, how to confront the challenge, how to begin the diet, where you'll need to plan ahead, how to deal with it, primarily for kids, travel tips, etc.

Anne Lee discussed ingredients, coping, grains and how to use them, cross-contamination, and much of the session was spent with people asking questions and others (or Anne Lee herself) answering them.

In Dr. Green's second talk (alternate therapies) he discussed the video capsule study with the pill endoscopy, alternate therapies to a gluten-free Diet (what they're researching), and he asked for money for Columbia to research :lol: . He also discussed celiac centers in Maryland, Chicago, etc.

If anyone has questions about a specific thing, I'll type all my notes on it (such as...how best to prevent celiac disease) and send it to them. PM me or e-mail me.
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#36 bklyn

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Posted 03 April 2005 - 11:56 AM

celiac3270,
Thanks for your infor - my daughter attended also, took notes and called me with the facts. She was thoroughly impressed with Dr. Green and even asked one question about me! She convinced me to make an appointment with him (or one of his associates) to deal with my stomach problems. He talked about enzymes (which he prescribes) and how he doesn't agree with acid reducers (which my Dr. gave me). I told her to look for you, but no luck! She went to the 12:30 talk. She also ate a lot of gluten-free goodies.
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Kathy C.
Ft.Lauderdale, Fl.

#37 Guest_gliX_*

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Posted 03 April 2005 - 12:42 PM

Thanks for the info celiac3270. What did they discuss about alternate therapies? (such as the pill)
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#38 celiac3270

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Posted 03 April 2005 - 04:35 PM

They're researching 6 things:
  • Genetically modified wheat
  • Induce tolerance to gluten (the way breast feeding does)
  • Oral peptidases (an enzyme that digests the gliadin--THE PILL)
  • Block tTG
  • Block binding to the DQ groove
  • Block cytolcines
Bklyn, what question did she ask? I might remember her :D
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#39 Guest_gliX_*

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Posted 03 April 2005 - 04:48 PM

Did they mention the possibility of a cure anytime soon?
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#40 celiac3270

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Posted 03 April 2005 - 05:55 PM

A cure--no. But Dr. Green expects there will be a pill to help deal with accidental contamination in the next 10 years.
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#41 Guest_Viola_*

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Posted 03 April 2005 - 06:55 PM

Something to deal with accidental contamination would be something, especially when one is traveling. Dealing with it at home is one thing, but on the road is really hard. :huh:
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#42 Carriefaith

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Posted 11 April 2005 - 03:33 PM

That sounded like a really fun conference! Thanks for taking notes for us!
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#43 celiac3270

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Posted 11 April 2005 - 03:52 PM

Sure :). I still haven't typed them up--they're still in my notebook. But if you're interested in any one area, I'll get that portion for you :D . About six or seven people have e-mailed so far.
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#44 flagbabyds

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Posted 11 April 2005 - 07:10 PM

It was such a fun conference, my mom is typing up my notes to hand out to the rest of our support group in california and I will post them here later, All the talks I went to were really interesting, coping and amazing grains because we were just a little late (say 1.5 hours) ans missed the Whole Foods one which I really wanted to go to, but I did visit their booth multiple times. The teen cooking was also really fun, but I ate way too much even for my body...which is saying something :) but overall the conference was an amazing hit and I am working to get the Stanford one here next year to have a cooking porting which would be really fun because I think that the hands on was fun, even though it was just a bit messy :)
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Molly

#45 Rikki Tikki

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Posted 12 April 2005 - 04:29 AM

Hi Molly:

What part of California do you live in?
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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


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