Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


i3oogieDown

Recommended Posts

i3oogieDown Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master
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 Rookie

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 Grand Master
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 Rookie

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 Grand Master
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 Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 2 months later...
Emsybell Newbie

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!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    Yvonne Thomas
    Newest Member
    Yvonne Thomas
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.