Columbia Univ. Celiac Center - Dr. Lewis

[DeerGirl]

Hi all,

I am new the board. Long story short - years back went through celiac testing, consensus was it was negative. Time passes, diagnosis suspected again and am going for re-testing.

This time I decided to go to Celiac Disease Center at Columbia University and have an appointment with Dr. Suzanne Lewis.

Would like any feedback on the Columbia U center, the staff, the doctors et cetera... Helpful hints.

Also -- not sure if I should post this here, but just in case -- did anyone bring old pathology slides to their new doctor? If so, how do you get them? Request them from the first doctor, or does that doctor have to request them from a lab somewhere else?

Thanks in advance.

[happygirl]

DeerGirl,

Welcome to the board!

Not sure if you've seen it already, but the Columbia Celiac Center's page is www.celiacdiseasecenter.columbia.edu.

If you want to obtain slides (I'm assuming you had an endoscopy done, and you want the tissue samples in paraffin sent to your new doctor), you'll have to sign a release form at your new doctor, stating that you request Old Doctor to release your samples to New Doctor. You'll need to find out where your samples were sent (i.e., which hospital/pathology center) as your old doctor doesn't have them...they will be wherever the pathology department is located. Do you have copies of your old records? If not, I suggest getting a copy of them and bringing them with you (particularly, your Celiac blood/endoscopy report). If you have/get your records, your biopsy records will state where the biopsy was sent, and should probably have an ID number on it.

Hope this helps. Hopefully others will chime in.

Something to mention: even if you do not test positive for Celiac, you could still be non-Celiac gluten intolerant.

Best of luck,

Laura

[DeerGirl]

DeerGirl,

Welcome to the board!

Not sure if you've seen it already, but the Columbia Celiac Center's page is www.celiacdiseasecenter.columbia.edu.

If you want to obtain slides (I'm assuming you had an endoscopy done, and you want the tissue samples in paraffin sent to your new doctor), you'll have to sign a release form at your new doctor, stating that you request Old Doctor to release your samples to New Doctor. You'll need to find out where your samples were sent (i.e., which hospital/pathology center) as your old doctor doesn't have them...they will be wherever the pathology department is located. Do you have copies of your old records? If not, I suggest getting a copy of them and bringing them with you (particularly, your Celiac blood/endoscopy report). If you have/get your records, your biopsy records will state where the biopsy was sent, and should probably have an ID number on it.

Hope this helps. Hopefully others will chime in.

Something to mention: even if you do not test positive for Celiac, you could still be non-Celiac gluten intolerant.

Best of luck,

Laura

Laura -

Thank you so much!

I have checked out their website, even read Dr Green's book, which is very helpful and made an appointment for Dr Lewis there.

Yes, I did have an endoscopy years ago. Tomorrow I am requesting my records from my regular GI doc to bring along. I figure getting the pathology slides will take the longest :-(

Another doc I see feels I am most likely celiac. I wanted to see a specialist in celiac disease in an attempt to put my mind at rest, otherwise it will just nag at me. Whatever "final" information I can get I think will be helpful.

I had wondered about non-celiac gluten sensitivity -- if that is the case I am hoping the folks at Columbia will still be helpful?

Thanks!

[happygirl]

Actually, getting the biopsies isn't that long. I had my new doctor fax the release, they sent it out the next day, and it was there within the work week. But, the first step is getting the release signed. If you want to expedite the process, you might call Dr. Lewis' office, ask to speak to a nurse, tell her your concerns, and see if they can send you the form to sign, etc. That could get the process going. Only thing is that the slides will still be sent out for analysis...

I love Dr. Green's book...and I really commend him for the Celiac awareness that he is raising. I have heard great things about Dr. Green AND his associates.

There are a couple options with your old biopsies:

1. You didn't have Celiac back then---no damage.

2. You had Celiac back then, but

-doc didn't take enough samples

-celiac is patchy, so even if enough samples were taken, it could be missed

Non-celiac gluten sensitivity is a little bit more difficult because damage is not caused, so intestinal biopsies won't show anything, because there is nothing there to show. But, many people have the same symptoms. Either way, the diet is the same...100% gluten free. Some people just do better on a gluten free diet. Some people have positive bloodwork/positive biopsy, some have one, some had inconclusive testing or incorrect testing done, some never had testing, some just tried the diet, etc. Point is...there are many people out there that have had their symptoms resolved by going gluten free. On this board, we don't really care .

When is your app't?

[DeerGirl]

Great idea, I will call her office tomorrow and see if they can send me a form to fill out for the slides. Thanks! I'm really thankful that I live near the center at Columbia.

Some blood tests were positive last time as I recall. Biopsies normal. Tons of suggestive symptoms & history otherwise.

My appointment is in ~7weeks. They have me on a cancellation list, so I am hoping that I might be seen before then. The sooner the better, I hate the not knowing. Though I realize the more I read that for many people it is not cut-and-dry, which is fine, but even then I will know that it is not cut-and-dry and can move ahead accordingly (try gluten-free diet).

In the meantime I'm eating gluten like nobody's business.

Thanks again! Do you have any other good books to recommend? I want to be as knowledge-prepared as possible at my visit.

[happygirl]

Just so you know, positive bloodwork (depending on which tests) can range from indicative to highly indicative of Celiac, regardless of the biopsy.

I have read a lot of other books, and I really prefer Dr. Green's book. I don't think there is a lot of other things that the other books provide, except for "dealing" with the gluten free life (which, I thought Dr. Green's book covered in a highly intelligent way).

I would read on celiac.com also---great resource. When you get your lab results (which you can get without your new doctor, just have old doc release them to you), post them (including test name, score, range, etc).

Best of luck and keep us updated! And eat gluten for us

Laura

[DeerGirl]

I would read on celiac.com also---great resource. When you get your lab results (which you can get without your new doctor, just have old doc release them to you), post them (including test name, score, range, etc).

Best of luck and keep us updated! And eat gluten for us

Laura

Thanks again - I so appreciate it! I had started the lab process to get the biopsies released to doc #2 and requested my med records today from doc #1, which I should get in the next week.

As I recall my last tests were simply suggestive/negative. My history/symptoms appeared more suggestive.

Shall I post my results from the last tests, here, or on another board. New to this, so unsure of board-posting-etiquette.

Thanks again

[ENF]

The Celiac Center at Columbia will give you a very detailed Biopsy report and Celiac Disease Seriology blood test. You may want to get a bone density test while you're there, or at another time. The Bone Density test is done in another building, right in the area.

Hope you have nice weather that day - you might want to pack a lunch and stroll to the benches, near the West Side highway, where there is a great view of the George Washington bridge.

[DeerGirl]

The Celiac Center at Columbia will give you a very detailed Biopsy report and Celiac Disease Seriology blood test.

Thanks! -- so the biopsy report that comes out of NY-Presbyterian will be substantially more detailed than the original lab? Interesting.

I'm looking forward to getting seen and getting some more detailed information on the whole situation. Really hoping they have a cancellation before my appointment in 7 weeks.