Planning a visit to Columbia University's Celiac Center - Recommendations needed

[i3oogieDown]

Hello all - please forgive me if this has been discussed before, as I'm having trouble finding existing info in the forum. 

I am planning a trip to the Columbia University Celiac Disease Center ASAP, based on a recommendation from a family with a Celiac child in my area. I've been gluten/casein free for nearly 5 years now and I'm looking for a diagnosis, as well as some information and direction on other health risks and any risks to my new baby (8 months and currently eating gluten free because I am). I have at least one relative that's in the same boat - gluten-free for years but undiagnosed. Nobody in my area is knowledgeable about Celiac, and I'm not getting the information I need.

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My question, for those of you that have been there (adults) - Between Drs. Liebwohl, Krishnareddy, and Lewis, which doctor have you seen? What did you think? Who would you recommend, and why? 

Thanks everyone,

Sarah

[kareng]

6 minutes ago, i3oogieDown said:

Hello all - please forgive me if this has been discussed before, as I'm having trouble finding existing info in the forum. 

I am planning a trip to the Columbia University Celiac Disease Center ASAP, based on a recommendation from a family with a Celiac child in my area. I've been gluten/casein free for nearly 5 years now and I'm looking for a diagnosis, as well as some information and direction on other health risks and any risks to my new baby (8 months and currently eating gluten free because I am). I have at least one relative that's in the same boat - gluten-free for years but undiagnosed. Nobody in my area is knowledgeable about Celiac, and I'm not getting the information I need.

Open Original Shared Link

My question, for those of you that have been there (adults) - Between Drs. Liebwohl, Krishnareddy, and Lewis, which doctor have you seen? What did you think? Who would you recommend, and why? 

Thanks everyone,

Sarah

Did you tell them when you made the appointment that you are gluten free for years?  They may tell you to do a gluten challenge first, so you don't waste your time and money.

[i3oogieDown]

Yes, I did tell the person in the office that. She mentioned genetic (cheek swab) testing for markers and a couple of other things. I will get more information when I call for an appointment, but I need to decide on a doctor before I make the call.

[kareng]

16 minutes ago, i3oogieDown said:

Yes, I did tell the person in the office that. She mentioned genetic (cheek swab) testing for markers and a couple of other things. I will get more information when I call for an appointment, but I need to decide on a doctor before I make the call.

You could get the gene test before you go.  Might save some time for future visits.  Feel like you got some info.

I would think they would all be good.  I think I have heard Dr. Lebwhol give a presentation.  I think I would pick one of the women.  I like a female doctor for myself.

[i3oogieDown]

That's a good idea, I will ask about that when I call. I read through an interview that Lebwhol gave, sounded great, but sometimes when you're heavy into the research side of things you don't have as much time for patients. I can also see the benefit of seeing one of the female doctors, but I couldn't decide based on the limited information I've been able to find. Hopefully someone else here will have some experience. Thank you so much for your input!

[kareng]

15 minutes ago, i3oogieDown said:

That's a good idea, I will ask about that when I call. I read through an interview that Lebwhol gave, sounded great, but sometimes when you're heavy into the research side of things you don't have as much time for patients. I can also see the benefit of seeing one of the female doctors, but I couldn't decide based on the limited information I've been able to find. Hopefully someone else here will have some experience. Thank you so much for your input!

Your PCP or OB/GYN can order the genetic test for you.  Maybe your insurance will pay for it that way.  In some states, you can go to a place like Quest diagnostics and "order" it yourself.  It is around $300 when I got it a few years ago.  

[i3oogieDown]

Sounds like perhaps a call to my insurance might be in order, too. Thanks!

[Emsybell]

Hi all!  I have an appointment with Dr. Lewis at the Celiac Center on Tuesday.  Does anyone know what the consult will entail and how long I should expect to be there?  Has anyone seen Dr. Lewis?  Any advice/info would be greatly appreciated!