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Question For Celiac3270

wildones

By wildones
in Doctors

Recommended Posts

wildones Apprentice
wildones
Posted

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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celiac3270 Collaborator
celiac3270
Posted

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
wildones
Posted
  • Author

thank you !!!

ryebaby0 Enthusiast
ryebaby0
Posted

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
Happycat
Posted

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
Happycat
Posted

Sorry, 212-305-5590

Lisa

wildones Apprentice
wildones
Posted
  • Author

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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ryebaby0 Enthusiast
ryebaby0
Posted

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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      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
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