Hi,

Has anyone on this forum had the good fortune (or bad ) to see Peter Green or any of his associates at Columbia? How did you feel about the experience? Has it been helpful to you? Any feedback would be greatly appreciated.

Alex

I haven't seen him, but my GI doc and his PA have

Based on their impressive knowledge of celiac and gluten intolerance, I would say it would be worth looking in to. I know that's where my GI doc gets most of his research info.

I'm hoping to learn this week that my sister (a family Nurse Practitioner) can go with me to their symposium/forum in November. If she can't go, I can't afford lodging alone, so am praying she can.

The symposium is for physicians and researchers, but the clinical forum is open to patients. If you're interested, don't let the symposium fees scare you away. You'll want the "clinical forum" no credit hours option described in the second link. NOTE ...fees increase by $100 after August 1.


http://www.celiacdiseasecenter.columbia.ed...sium/index.html

http://www.celiacdiseasecenter.columbia.ed...categories.html

I have an appointment with Susie Lee on Monday. She also has a practice in Fort Washington which might be easier to get into, and I know she accepts a lot more types of insurance than Dr. Green. Having already seen a few reported experts that were anything but, I'm very hopeful. I'll let you know how it goes.

I was at the Celiac Center last week and I had an endoscopy and capsule endoscopy. I have seen Dr. Suzie Lee in the past, but I'm having stomach problems so I decided to go back to her. All my tests were good, my Ttg was negative, my villi have returned to normal. She did these tests to be sure that Celiac was under control. No real answer to my stomach aches, but at least I was relieved to hear I'm responding well to the diet.

I will be seeing him speak at Stanford in September! =)

http://www.celiacsprue.org/conference.htm

I wish I could see him as a patient.

Hi Alex,

I have not seen Dr. Green but I did have the good fortune to attend a talk given by Dr. Fasano from the University of Maryland. The talk was presented at the University of Virginia medical center about a month ago. Dr. Fasano talked about the background of Celiac Disease and how it came to be diagnosed during the grain shortages of WWII. He also talked about the ongoing research projects from his group and the group at Stanford University. He listed the main research centers in the U.S. including the one at Columbia. It was nice to meet someone who is devoting most of his career to the search for and possible cure of this condition. He answered as many questions as he could and his delivery with a little humor allowed all of those that attended the opportunity to laugh at some of the things that are sometimes overlooked in the medical community. Anyway it was well worth the drive to meet him and see what someone with his knowledge is doing. I would probably see him again if the opportunity comes.

Tom

bklyn,

could you forward me her contact information?

Thanks,
Picard

Picard,
Celiac Disease Center at Columbia University
Susie K. Lee, MD
Assistant Professor of Medicine
(212) 342-4508
180 Fort Washington Ave.
Suite 956, New York, N.Y. 10032

http://www.celiacdiseasecenter.columbia.ed...3-StaffBios.htm


This link is for the bios of the staff at the Columbia Celiac Center.

I actually had an appointment with Susie Lee some months ago but my endo and my gp convinced me to see a GI — who was good but not too interested in celiac sprue. I'm glad to hear she's a good doctor.

Thank you.

My GI doc is Dr. Jeffrey Stein ~ also at Columbia Health Center, but not officially in the Celiac Disease Center. I did see Dr. Susie Lee after 1 year on the gluten-free diet. I'm a grad student at Columbia so it was convenient enough for me to go see her. Dr. Stein recommended I see her since they have so many on-going studies, though since I had already improved on the diet my meeting with her was kind of uneventful. Anyhow, she is very nice, but I also highly recommend Dr. Stein.

Also, a friend of mine has HIGHLY recommended Dr. Fasano in MD. Her brother & sister both have Celiac, and the whole family has a lot of respect for him.

I saw Dr. Lee -- I thought she was a flake and told me a number of inconsistent things and was also rather unresponsive to any phone calls

the only thing of value I got out of my visit was to use prometheus labs for blood testing...

i.e. the best thing to do to get comparable and reliable blood test results to test one's gradual remission of celiac disease is to do the following:

go to your trusted PCP and ask to have MULTIPLE vials of blood taken (as many as you can muster -- maybe 6 or 7). At that point ask your PCP to freeze all but one of the vials and send that unfrozen vial to prometheus for their celiac disease serology test. Given that even their tests change but are at least performed with care unlike at Quest (they are very unreliable in my experience, they use the least expensive test kits as it's not their liability and they are publically traded), Prometheus is the only useful place to attempt to relate serology changes. Every 3 or so months, you'll want to get the celiac disease serology test repeated on two vials of blood (one new one and one of the frozen ones, especially if they claim they changed their serology testing methodology in the slightest way).

Hopefully you guys will have better luck than me

I see this thread is 2 years old but I was wondering if any of you had any new information about Dr Green, Dr Lee and how you are doing. I am 2 months into my diagnosis and this week started with numbness in 3 toes of my left foot and some pain up my leg. In reading I see different opinions about B12, levels, amount etc. Any advice is appreciated.

I have not been a patient of Dr. Green's, but I have attended many of his talks, met him in person many times, even helped him with a book signing at our vendor fair. He knows his stuff, and he is a very down to earth person. He is a very busy doctor though, and takes a long time to see him.

As for your numb toes and such, you should see a neurologist, that is their speciality.

I have an appointment with Dr. Green tomorrow actually...I just happened upon this thread! I have waited about 5 months for my first appointment with him, so hopefully it's worth it. From all the wonderful reviews and advice I've heard, I think it will be. I'm hopeful at least...I'll fill you all in once get back.

I would be very interested in hearing what you think of Dr. Green, after your appointment. I just finished reading his book on Celiac Disease and have to admit it was very impressive. He dispels many of the myths that are rampant with people regarding Celiac Disease, one of which is about DH and how people think it can be caused by touching gluten. There is so much misinformation about the disease and with so many having a hard time with it all, it's important to learn the truth so you'll make better choices and have an easier time with maintaining the lifestyle.

I also like the fact that he believes patients regarding their suffering and inability to get help from other doctors. He also seems to back up the strong connection between Celiac and many other autoimmune problems. I don't think he's the type of doctor to tell you it's all in your head! Good luck to you!

FABULOUS APPOINTMENT! I went to see Dr. Green yesterday afternoon, and what an experience it was. I hate going to see doctors re: this issue, b/c I feel like I have so much unwarranted anxiety about it and discomfort, that surely nobody is going to believe me or help me through it. The last dr. I saw was nice enough, but insisted that after my celiac blood panel came back negative, that there was no way I could have the disease, so the biopsy was out of the question. In the meantime (while waiting on my appt to arrive with dr. green) I decided to try a gluten free diet out for myself. It has helped, although I still do have enormous trouble with anxiety triggering symptoms (traveling, etc) - but in general, my day to day symptoms are gone.

Dr. Green discussed in detail my history and parent's history (my mother has celiac...so we also discussed her symptoms, diagnosis, etc). Frankly, I was pretty sure he was going to get on to me for going gluten free before having a biopsy. He was wonderful though...He offered up many suggestions before I could even suggest them myself (and I had a LARGE list). He wanted me to get a blood panel test AGAIN, and stated that a negative blood test result did not mean i did not have the disease. He also handed me the genetic testing packet right then and there, which is something I had also been very interested in doing. He recommended a potential medication that may help with my anxiety issues, so that I could really see if the gluten free diet was working - without the nervous stomach (which he mentioned is a very common ibs component of celiac). He wrote out a step by step list as to what we should do first, and next, and so on. He provided alternatives for almost every step, and made it clear that it was about my comfort and well being. We took care of alot during one meeting, and it was the first time I felt like I had an actual doctor/patient relationship - especially for New York. I find it very hard here to get real, personal care in this city...but he provided just that. I was very impressed and felt like he was truly invested in helping me get to the root of my issues. He was extremely thorough....SO i would definitely recommend anyone to see him!

You know, after reading this, I think I have doctor envy!

The nervous stomach issue may just be the unhealed gut reaction. My stomach was nauseous and felt like butterflies for awhile, even after going gluten-free. It took a little while to resolve, about 6 months, but it was all due to Celiac. I am not one to take an anti-anything med so decided to wait it out and all my symptoms have resolved with the gluten-free diet.

I would recommend that everyone read Dr. Green's book because he set straight some issues that I see thrown around this forum that people get bad advice for. People need the correct information or they will struggle with this lifestyle.

I am surprised there is any big question as to whether or not you have celiac disease. If your mother has it, then your odds are so high, if you present with symptoms, it should be pretty much a no-brainer. My family all have "in your face" symptoms, the Celiac gene is on BOTH sides of my family yet everyone else but my sister and I will not hear that they have celiac disease. No wonder there is a host of autoimmune problems in my family.

I wish you luck and am thrilled you found a doctor that actually listens and didn't treat you like an ass for doing a trial diet. I wish I had heard about this guy years ago and maybe it wouldn't have taken 20 years for me to be diagnosed.

Well thank you for the support ! It was a really good experience. I even mentioned that my mother was diagnosed so long ago, that at that point, they were telling people that after going gluten-free if your symptoms ceased, then you could introduce gluten back into your diet. He seemed very concerned, giving examples, and ultimately encouraging me to explain it to her as he explained it to me - that this was NOT correct. He was genuinley interested in her health as well. He just seems to truly care for people dealing with celiac and related issues.

It's good to know (although not good you had to experience it) that other people have had the anxiety issues as well. I'm not one to take meds if I don't have to...mostly b/c i have had very back luck with them in the past. I haven't made a decision as to whether or not I'll take it yet - but it's an option I suppose. I like to research things like that before I make any decisions.

It's also a relief to hear that your nervous stomach symptoms DID go away! That gives me lots of hope!

If you follow a strict gluten-free diet, your anxiety issues will most likely resolve. Having celiac disease really screws up both body and mind....I am a totally different person than I was pre-diagnosis. You may want to try just going gluten-free and if that doesn't do the trick within a set amount of time, then consider meds....but make sure they are gluten-free! I think for many that everyday stresses become impossible to deal with if you are vitamin starved and are not processing your food correctly. You don't realize how bad things have gotten because it happens slowly over time and you sort of adjust to it. You keep compensating until you crash. I hit the point where I really wasn't eating all that much food because my stomach was so messed up...not good when you are underweight to begin with. I can not tell you the difference now that I have been gluten-free for 3 years! How many people do you know that have zero GI issues? My stomach has never felt so good.

It must be so nice to have a doctor that knows so much about celiac disease and doesn't look at you like you have 3 heads when you go into symptoms. I was treated badly by a number of doctors so do not have a very high opinion of the medical profession. When I read Dr. Green's book, I realized this man was different
because his information was correct and his desire to help people get diagnosed was apparent.

Good luck with talking to your mother about it. My family won't even discuss their medical issues with me anymore because they are so steeped in denial
and think they'll die without bread. It has affected our relationship but that's their problem. I feel so good now I just don't care......some people would rather be on meds and have health issues than do the work to be healthy. Dumb!