celiac3270

I got really bored walking the halls, so I can't imagine how bored my mom must have been. It was a very long hallway--at least the length of a city block, I calculated, and since it's 20 blocks in a mile, I walked easily over 10 miles waiting for x-rays to come back (they had me walking to make it go through faster). But that's what we do in NY...everything's so close that we walk ....

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

The Communion wafer is definitely not okay for us. It will destroy your intestines. Catholics have...little we can do about it. There is a low-gluten wafer deemed safe, but the prospect of ingesting gluten purposely bothers me. You'll get slightly contaminated anyway, without realizing it (in minute amounts) so that additional gluten might make it too much. The other alternative is to drink the wine, but that can also be problematic since people sometimes drink it after taking communion (crumbs) and the rim is only wiped with a handkerchief--I wouldn't recommend that either. Protestants have the option of providing a gluten-free wafer and taking that instead, but as Catholics all we can do is...hope that the Church will be more accomodating eventually. It is 100% not allowed to take a gluten-free wafer. There's a story about an 8-year-old girl whose First Communion was invalidated because she used a gluten-free wafer. See the Publications section and look for one about the Catholic Church or Communion or something--there are a couple threads on it.

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

I think so...at first I didn't like certain gluten-free products that I now love .

Corn starch is always safe

As long as there's nothing in any artificial/natural flavors...and as long as there's no cross-contamination. I don't know how the ice cream system works at all of these places, but if there's a scoop, make sure the scoops are only used in the one flavor or you could have contamination. If it's in a machine, it would be good to find out if the machine is only used for that flavor or if other flavors that might mix with it are gluten-free...

Hi! Thank you for noticing and posting ! With the barium it all depends...since I had a problem and it wasn't going through, I didn't get out till around 2:00...and I was there around 8 or 8:30. It all depends, though...if you get there by 8 and it goes quickly, you could be done by 11...the barium is disgusting, but they'll put chocolate syrup in it to make it taste better (yeah, right) if you want. They happened to have Hershey's at my hospital so it was okay, but I would advise you to bring your own just in case it's a generic brand or one you haven't heard of. Just try to get it down quickly, however difficult it is. I shocked the nurses by drinking it quickly so I could leave early (but it took forever to get through anyway ). I just pretended I was on Survivor or Fear Factor or something where you have to eat or drink something nasty . Good luck and thank you again .

-celiac3270

Both are fine.

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!

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 . 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.

Clarification: I don't mean don't eat wheat if you're sure it's good for you, I meant before this jiggery pokery.

But actually, wheat isn't good for anyone! It does have some nutritional value, but the human species developed for a long time without eating wheat. Wheat was introduced to our diet in the form of rewards. given by the Romans and the Greeks, who got it from the east, then other places as well. The point, though, is that by the time we were exposed to it, we had developed so much that our digestive symptoms were not supposed to even have it. While rice is fully digested, 10% of some of the other gluten-containing grains can't be digested.

I know! 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

Yoplait -- All gluten-free

Columbo -- Plain is gluten-free

Dannon -- Plain, low-fat, no-fat.

Stonyfield Farms -- I know the plain is gluten-free.

Oh!

The 6 things they're researching:

• Gentically modify wheat -- go back to ancient wheat
  
• Induce tolerance to gluten (in the way breastfeeding does)
  
• Oral peptidases -- an enzyme that digests the gliadin. Must digest all, unlike with pills taken for lactose intolerance, which only need to digest some.
  
• Block tTG
  
• Block binding to the DQ groove
  
• Block cytolcines
  

I think you'll be able to have McCanns--I'll explain in that other post when I get around to typing up 32 pgs...lol...maybe I'll just summarize it in 1/4 of that.

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

...yep...the talks were fascinating...the teen cooking class...left much to be desired lol And about eating...haha...I thought I was eating a lot until you told me what you had had

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...

You got it, Michael

Ooh...very interesting information from Anne Lee about oats. I'll put it in a post under the coping section which I'll do later on the Celiac conference.

Copy the information from the post. Then paste it into your post. Then type in your answers underneath each question. Or type all the answers in and then delete the original question...does that make sense?

Dr. Green talked about 6 things they're researching...I'll make a post under the coping with section on the conference later.

Yes. Either PM "admin" or e-mail Open Original Shared Link. Include your current board name and the new name you want. What are you thinking of changing it to?

Yes--only some are gluten-free.