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Question For Celiac3270
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8 posts in this topic

I saw this in another post you wrote and am wondering if you could give me some more info please :D

"When I talked to a nutritionist, Anne Lee (who works with famous celiac Dr. Green), she said that one of the key things is not to worry -- stress is not good for dealing with and recovering from celiac disease...

"

Do you have contact information for Dr. Green and his/her nutritionist ?

Our whole family-me, husband and each of our triplets has celiac disease or is gluten intolerant. One of my boys also has major GI challenges besides celiac disease- He has had over 70% of his small intestines, his ileocecal valve and part of his colon removed, so he has SBS (short bowel syndrome). He also has damage to his common bile duct from gal bladder surgery removal when he was 5 yrs old. He now has a biliary stent in place after 3 recent proceedure to remove stones in his bile duct. He may also have a liver disorder called Caroli's disease. So obviously not just a 'simple' case of celiac disease as far as nutrition challenges. I have been looking for a really good nutritionist to help us. More info than you needed :D but.. thanks for any info you can provide.

Lorraine

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I have her business card, and if you call her office, I'm sure you could get Dr. Green's number. I just typed out all the info., in case you also want things such as e-mail:

Anne Roland Lee, MSEd, RD, CDE

Nutritonist

Celiac Disease Center at Columbia

Herbert Irving Pavillion

New York-Presbyterian Hospital

Colubia University College of Physicians & Surgeons

161 Fort Washington Avenue, New York, NY 10032

Phone: (212) 342-0252

Fax: (212) 305-3364

E-mail: arl2004@columbia.edu

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Not to barge in , but have you contacted the peds GI department at Children's Hospital of Pittsburgh? Or did he have the SBS surgeries there? I know they do lots of work with short bowel kids and the GI department has it's own nutritionist, who we see whenever we have a GI doc appointment. They have a really good website, too, with contact information, but the nutritionist's name is Carey O'Brien.

joanna

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Hi Lorraine,

I have Dr. Peter Green's # 212-305-559. His address is Coumbia University Hospital 161 Ft. Washington Ave. NY,NY 10032.

Hope it helps

Lisa :rolleyes:

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Hi Lisa

Thanks for the number :)

Hi Joanna

My son's Gi drs have their own nutritionist and we have also seen several nutritionists at our local children's hospital, but it has been a while since we have been there. My son has also seen a peds GI dr who specializes in nutrition, but I haven't been real thrilled with any of them. He has a very unique combination of GI issues-the SBS, celiac and Caroli's disease(possibly-we don't know if he has it for certain now) is extremely unusual. I have heard thet the clinic you are referring to has a GI motility clinic is that true ? My son also has some yet to be definitively diagnosed motility issues, even though he has seen a dr in Kansas City for diagnostic testing (the dr there was a JERK) Long story, but a complete waste of time :angry:

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Yes, children's has a motility clinic -- it's one of their areas of expertise. Through the experience of hospitalization we met almost all of the Pittsburgh GI peds at Children's Hospital, and while I personally liked some of them more than others, they are all really good at what they do. Good luck in your journey

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