Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question For Celiac3270


wildones

Recommended Posts

wildones Apprentice

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

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

wildones Apprentice

thank you !!!

ryebaby0 Enthusiast

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

Happycat Rookie

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:

Happycat Rookie

Sorry, 212-305-5590

Lisa

wildones Apprentice

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:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ryebaby0 Enthusiast

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

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,560
    • Most Online (within 30 mins)
      7,748

    kristenrachelle
    Newest Member
    kristenrachelle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.