The Celiac Conference At Columbia 4-2-05

[celiac3270]

Hi everyone,

You've probably seen the thread on the Celiac Conference at Columbia that Molly started (also in this section--Coping with). It will take place this Saturday and there will be many physicians speaking. Today I went to my GI doctor (Joseph Levy) who is with Columbia Presbyterian and, I learned, is going to be speaking there from I think 10:30-12:30 on "Getting real with the gluten-free diet." A sidenote of good news: my weight went from way off the charts (low) to being in the 10th percentile in one month (12 pounds)!

I said in the other post that I would try to take good notes and then share on here so that even if you can't go to the conference, you can at least feel like you did . Also, if anyone has questions that they'd like me to ask for them I could do that and post back the replies--on the oats controversy, etc.

I'll write down any questions you mention here and I'll check until Saturday morning, about 6:00 AM (Eastern time)...

-celiac3270

[plantime]

I don't have any questions. I just want to say thanks for going and taking notes for the rest of us.

[flagbabyds]

i'm flying out to new york tomorrow to go to the conference, all the way from california. I'll also take notes

[KaitiUSA]

I have no questions either but just post whatever notes you take or anything you find out...thanks for doing this celiac3270

[minibabe]

I know that this my sound stupid......but where is columbia, is it columbia University, I am on Long Island and if it is close I would love to attend it. Thank You.

Amanda

[judy05]

celiac3270,

Thanks for doing this. I would like to know if and how the medical community is doing to educate their physicians, both in school and out, on paying more attention to and testing more for celiac and gluten intolerance. They all need to be aware that there are over 200 symptoms and we are not all skinny little children with distended abdomens and diarrhea. Why can't the population be screened with a blood test at an early age or when symptoms appear, which goes back to them knowing the symptoms...Thanks

[darlindeb25]

i do have one question celiac3270----ask about celiacs and neuropathy and what vitamins they feel are necessary for us to be taking, especially us that went years without diagnosis--otay---i would be very interested in that question-----------by the way, anyone interested--Dr. Green will be talking at the suffolk county celiac support meeting on tuesday april 5th--em me for the location if you would like to go---deb

[debmidge]

celiac3270, Thanks for taking the time to attend this conference. I have comments that could be made into questions.

1) will someone in medical field make it mandatory for doctors to screen children at a certain age for the anti bodies?

2) will someone in medical field convince GP's and gastros to test for celiac disease even if the doctor feels it's unlikely that the patient has this, like in the instance of someone who has IBS that goes unrelieved with diet for IBS and loss of weight.

3) can we somehow reduce the number of years it takes for someone to get diagnosed with celiac disease?

4) Why are doctors so reluctant to consider celiac disease as a cause for a patient's problems?

5) Will doctors be trained in spotting celiac disease? Will someone in medicine run a special Continuing Education program for this? Will it be mandatory? It should be...

6) can someone explain the reluctance of doctors to order the simple blood test for celiac disease? They react as if someone was asking for an MRI....

Thanks, Debbie

[celiac3270]

Amanda, the conference is at Columbia Presbyterian up around 165th. It is close, but unfortunately, even the extended deadline ended on March 25th. Perhaps e-mail the person who is organizing the event, since they didn't seem to be filled up at all. Here's the e-mail: Open Original Shared Link...and the link to sign up is here: go to the second one down, I think: Open Original Shared Link

Deb--that's a very good question...

Judy--I wrote your's down also.

Debbie, I think the questions you have can (in some cases) be rolled together...I'll post replies to both of your questions.

And anyone w/ q's...post them before Saturday morning!

[debmidge]

Thank you!

[plantime]

So two of you are going! Cool! Post notes for us!

[bklyn]

celiac3270 - My two daughters who live in NY will be attending. I signed up but I'm not feeling up to attending. One of my daughters is getting tested, the other is going to attend Dr. Green's speech. Will you be wearing name tags?

[celiac3270]

Oh...I don't know if they have nametags. If so, then yes--and if you see someone wearing a "celiac3270" nametag, it's probably me! Are you sure you won't make it? There are still two days before the conference.

[minibabe]

celiac3270 thank you so much. I just emailed them and I really hope that they can get back to me, because I would really like to attend this. Thank you so much again, I really appericate it.

Amanda

[celiac3270]

With the questions about physician awareness arising, here's an article:

https://www.celiac.com/st_prod.html?p_prodid=1132

[Canadian Karen]

Hi celiac3270,

Glad to hear you are going to this conference and will be posting back to us.

I would like to know if the medical establishment is going to be more "combined" with regard to celiac disease and all the related conditions and diseases that go along with it. When I mentioned to my family doctor that I would like to go to a specialist who I can go to who can fit all these auto-immune diseases together like a puzzle, she had no clue how to approach this. You have your GI for gastro, your rheumatologist for arthritis, your neurologist for neurological problems, your endocrinologist for thyroid, etc. but they are all blind to each other. Who can you go to to fit all this together for the best course of treatment? I think that would be quite useful!

Karen

[celiac3270]

Okay--I have all the questions written down in the notebook I'll also be taking notes in. In the situations where some of you asked multiple questions, I might not be able to ask all of them in the 20 min. Q & A period, but I'll try to phrase the questions in ways that...compress the most important information into them.

I will check tomorrow morning, but we have to be there by 8 sharp since my mom is doing the bloodwork then. So, though I doubt anymore questions will come by then, tomorrow around 6:15 will be the last time I'll check! So if you want medical professionals to answer your questions, post them now!

[celiac3270]

Okay, I've summarized your questions into shorter, more compressed questions. Tell me if you'd prefer that I phrase your question differently than what is below:

• How, if at all, is the medical community emphasizing to their physicians, the importance of testing for Celiac? Also, how is the medical community emphasizing that Celiac appears in so many different ways? After all, there are over 200 symptoms!
  
• What vitamins should Celiacs be taking, in particular, those who went many years undiagnosed?
  
• Do you think it will eventually become mandatory in the United States for doctors to screen children for Celiac?
  
• Why are doctors sometimes so reluctant to consider celiac disease as a cause for a patient's problems? Additionally, can you explain the reluctance of doctors to order the simple blood test for celiac disease?
  
• Can we somehow reduce the number of years it takes for someone to get diagnosed with celiac disease? [that would be raising awareness and educating doctors, I suspect]
  
• Will the medical establishment be more combined with regards to Celiac disease and all the related conditions and diseases that go along with it? With all the related problems, many Celiacs need to see multiple doctors, who don't show much cohesion. Also, who can you go to to fit all this together for the best course of treatment?
  

[Rikki Tikki]

Hi Molly:

There is a conference every year in California. It's at Stanford and they have some really good speakers. I think it's in October. I have been the last 2 years.

Let us know about anything new.

Thanks

Sally

[Rikki Tikki]

Sounds good celiac3270, take good notes!

Thanks

Sally

[Canadian Karen]

Good Luck! Blow them away with all our questions!!!! LOL!

They'll take one look at you and think they are talking to Doogie Howser, M.D.!!

Karen

[celiac3270]

All right, bye everyone!

[Canadian Karen]

Good Luck, celiac3270!!

Karen

[celiac3270]

Thank you

I just got back and I typed out a very long post about it......and then I hit add reply and my connection starts to go and it didn't go through....lost it all

[plantime]

AAAHHH!!! 8-pppppp!!! What a rip! Did you by any chance save it to notepad or wordpad? It gets to be a lot of work, retyping!