Celiac Disease Center At Columbia University

[megsylvan2]

Open Original Shared Link

Floridanative posted this in another section at: Open Original Shared Link, but I thought this was so important as to start another thread for this reply. Please forgive me if this is not correct.

The article mentioned above by Floridanative contained a very interesting link to the Celiac Disease Center at Columbia University Open Original Shared Link, containing informations for patients and kids. But the best part was the link about Celiac for Doctors. This might be a really good link to give to doctors. If they are receptive, it provides information by a very well-respected source. Even if they are not receptive, I'll bet most doctors would visit it eventually. This section provides excellent information for doctors with information about diagnosis and testing. It states that the disease is much more common than originally thought, and provides all the latest info about testing and what to look for.

Of special interest to me was the section on Management After Diagnosis. This section lists what to watch for and screen for as a follow up. This is the information that I felt was sorely lacking in my doctor (despite the fact that she didn't want to be bothered with actually trying to find out if I really might have Celiac). This section list 10 items that should be monitored for in Celiac patients, and is the level of care that I would expect to get from my doctor and the medical community. It is a real shame that is not what we experience, but maybe, with a gentle nudge to our doctors in the direction of this website might help a little bit.

I looked to see if perhaps they provided this information in a pamphlet form, as I think it would be very valuable to take that to our doctors, rather than hoping your doctor will decide to actually take the time to go visit the recommended website, which is doubtful for busy doctors. But if you put a pamphlet right in his/her hands, the chances are actually quite good that they will actually read it. And because it is from a respected medical institution, I think it quite likely that they might actually be receptive to the information contained within. That way we would all benefit. The doctor would gain quick information to help keep him/her up-to-date on the latest medical information in this area, and we would benefit from better diagnosis and follow-up.

Unfortunately, there was no pamphlet listed on the site. Perhaps if they receive enough suggestions and requests for such information, along with a brief explanation of the difficulties we have in getting diagnosis, maybe they might consent to create such a pamphlet.

In any event, also visit the Research Project section for the research papers they have available.

Anyway, it's a thought, and I felt it was important to point this link out. Maybe others had already found it, but I hadn't seen anything like it before coming from the medical community. Most of the links of good sites on Celiac come from the patient community as support groups. I thought this was different and might be more likely to be of interest to doctors.

Also note that in the section on management after diagnosis, the first sentence states: "A strict gluten-free diet is advised for life."...

Meg

[megsylvan2]

Oh, I see that this is where Dr. Peter Green practices, so of course you all are probably well acquainted with this site. Sorry. It was new to me, and I was excited by the great information it gave for doctors. I believe I've read some negative things in passing about Dr. Green on this board. Maybe not so much about his work, but more so about his personality and lack of 'bedside manner' with patients... Oh well, I still think it's a great resource for doctors and patients too!

[moonunit]

Another decent site to refer doctors to is the William K. Warren Medical Research Center for Celiac Disease. It's affiliated with the University of California San Diego, and it's pretty new.

Main site:

Open Original Shared Link

FAQ for doctors:

Open Original Shared Link

The FAQ for doctors is basically the same one as the FAQ for patients but written in doctor-speak. Sadly, I read somewhere that the pediatric side of this center is up and running but the adult side is postponed indefinitely due to lack of funding...

There is a celiac run/walk in San Diego in May as well as in several other cities (the "other participating cities" link on the left of the page includes more than are listed in the menu):

Open Original Shared Link

(My apologies if this is redundant information, but I'm all about getting the word out!)

[floridanative]

Meg - thanks for posting that link as I do think it's a good idea since we can't all read every thread on here and have a life too! Also important to note that Dr. Green's group has a Celiac seminar this Nov. in NYC. I can't attend this year but I'm sure some of you in NYC may want to check it out. The doctors go to one part of the seminar and patients go to another, both held I think in a Hilton or Sheraton or something in Manhatten for four days. I have no idea of cost and so forth.

Another link that is very good to print pages to give family members about them getting tested is www.celiacdisease.net which is the Univ. of Chicago Celiac site and they are the ones who send out free gluten-free food basket to anyone in the US with a biopsy dx of Celiac. They don't offer pamplets either I don't think. I think those can be purchased from CSA site or GIG site...can't remember which.