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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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