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The Celiac Conference At Columbia 4-2-05
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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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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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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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That's a "raspberry" to cpu problems! Look at it as eyes (8), nose (-), and tongue (pppp)!

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

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

Karen :D

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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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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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Ok celiac3270:

Get some sleep, sweet dreams.

Sally

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

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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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Did they mention the possibility of a cure anytime soon?

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

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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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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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Hi Molly:

What part of California do you live in?

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I live in Stanford California near San Francisco

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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