Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Link to comment
Share on other sites

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

Link to comment
Share on other sites
wildones Apprentice

thank you !!!

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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:

Link to comment
Share on other sites
Happycat Rookie

Sorry, 212-305-5590

Lisa

Link to comment
Share on other sites
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:

Link to comment
Share on other sites

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

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,761
    • Most Online (within 30 mins)
      7,748

    manolasingluten
    Newest Member
    manolasingluten
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • julie falco
    • Dhruv
      @trents I absolutely understand the perspective of getting off completely from wheat,  but sometimes situation may occur that you won't have choice to eat other than wheat,  my son travels a lot, since they travel in team, it's not easy to go out and find him a gluten free every single time! I have seen, even in NJ I m struggling to find out gluten free stuff, in this country we don't get fresh food in stores, other day i saw gluten free bread so hard that will never feel to eat it! Once in while means once in a while, when there is no absolute option. Here all goes by book, there is no enough scientific research done yet on eating gluten with celiac,  everyone has there own narrative,  only it being said don't eat wheat, but Noone has come up with the experience. And moreover my sons diagnosis is yet to define, whether he has celiac or NCGS. last time his endoscopy came negative hence doctor did not bother to tell us. I hope this time it will be the same case. We are figuring out why his billirubin is high, may be that could be the reason his igg iga test is high, will get check on all and come to the conclusion. My son and us is absolutely fine not eating gluten, but one can't guarantee that every time they will get the gluten free food other than home. I also don't trust under the table of "gluten free products" have see people still have same iga igg count even after following the diet. This is all learnings, will keep him under observation and go through the regular testing to find out how his body reacts to what.  I may sound like a fool, but medical is scam in US, hence i would consult doctors in India. 14 years ago they have announced i had a breast cancer, which was not, since then I don't trust medical system here.
    • Scott Adams
      Here are two older articles we've done on this topic which might be helpful:  
    • Rogol72
      I've been to Italy recently for a wedding and it was excellent. I made my own gluten-free sandwiches/pannini to take on the flights.  Spain is good and you can get good gluten-free breads in the supermarkets there. The UK and Ireland are very good also. Australia would be good since Coeliac Disease is fairly common there ...1 in 70 as opposed to 1 in 100 in other countries. You have to advocate for yourself in restaurants when eating out. I've read about several Coeliacs being cross contaminated from preordered gluten-free meals on airlines. Personally, I wouldn't trust a gluten-free meal on an airline especially long haul. Try the hashtag celiactravel on tiktok and instagram. Loads of Coeliacs posting about their experiences with plenty travel tips. The Atly app has a list of gluten-free friendly restaurants worldwide.
    • Pat Denman
      "Do not follow after the crowd to do what is bad." Bible. The world is full of crazy people who have little love for their neighbor. Eat what is best for you and ignore their recommendations. 
×
×
  • Create New...