Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

celiac3270

The Celiac Conference At Columbia 4-2-05

Recommended Posts

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

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

Share this post


Link to post
Share on other sites

Join eNewsletter

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


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

Share this post


Link to post
Share on other sites

Join eNewsletter

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 <_<


The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller

Judy- Gluten Intolerant

Share this post


Link to post
Share on other sites

Join eNewsletter

;) 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

Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

Share this post


Link to post
Share on other sites

Join eNewsletter

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


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

Share this post


Link to post
Share on other sites

Join eNewsletter

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: cb2280@columbia.edu...and the link to sign up is here: go to the second one down, I think: the regristration page

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!

Share this post


Link to post
Share on other sites

Join eNewsletter

Thank you!


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

Share this post


Link to post
Share on other sites

Join eNewsletter

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


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

Share this post


Link to post
Share on other sites

Join eNewsletter

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?


Kathy C.

Ft.Lauderdale, Fl.

Share this post


Link to post
Share on other sites

Join eNewsletter

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. :blink: 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. :huh: Who can you go to to fit all this together for the best course of treatment? :unsure: I think that would be quite useful!

Karen


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."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"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."

Unknown

Share this post


Link to post
Share on other sites

Join eNewsletter

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! :lol:

Share this post


Link to post
Share on other sites

Join eNewsletter

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?

Share this post


Link to post
Share on other sites

Join eNewsletter

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


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

Share this post


Link to post
Share on other sites

Join eNewsletter

Sounds good celiac3270, take good notes!

Thanks

Sally


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

Share this post


Link to post
Share on other sites

Join eNewsletter

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.!! :lol:

Karen


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."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"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."

Unknown

Share this post


Link to post
Share on other sites

Join eNewsletter

Good Luck, celiac3270!!

Karen


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."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"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."

Unknown

Share this post


Link to post
Share on other sites

Join eNewsletter

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!


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter