Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac Doctors In Northern Nj Or Nyc & Best Diagnosis Methods

jj929

By jj929
in Doctors

Recommended Posts

jj929 Newbie
jj929
Posted

Hi Everyone,

I'm not sure that I have Celiac, but I have some symptoms (ie. borderline osteoporis, IBS related issues, mild iron deficiency, diarrhea or soft stools at times) that make me suspicious. I had the celiac blood test done last summer and it came back negative, but I don't think I had any gluten in my system. My current gastro doctor does not think I have it, but he has not done an endoscopy to rule out the possibility.

Can you please tell me what the best way to diagnose this disease is? I also would appreciate your recommendations for doctors in northern New Jersey or NYC.

Thank you so much for your help!

JJ

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

Celiac.com Sponsor (A8-M):


CCR Newbie
CCR
Posted

I am far from an expert but the best way to diagnose it conclusively is through an small-bowel biopsy, which is done via an endoscopy. (You are asleep for this, don't faint!) It's an out-patient procedure. You need to find yourself a gastroenterologist. Did you know they just opened at Celiac Center at St. Barnabus in Livingston, New Jersey? I haven't been there yet but I may try it. Google it and you'll find it easily. Best of luck to you.

Carin

AndrewNYC Explorer
AndrewNYC
Posted

Just bear in mind that anybody with a couple bucks for the signage can open up a "celiac center".

CCR Newbie
CCR
Posted

I'm sure that's true. But I would hope that a reputable hospital would have more than signs! I'd be happy to find a nutritionist who knows something about celiac, a doctor who knows how to monitor my health, and maybe the occasional support group. Maybe that's too much to ask for. Hope not.

Carin

greeneyes33 Newbie
greeneyes33
Posted

I have been to the Kogan Celiac Center at St Barnabas. I went after my diagnosis for nutritional counseling. They also do screening. They are in a hospital, so I dont think that "anyone with money" just opened the center.

The nutritionist that I saw was great. She also has Celiac which in my opinion was great. She understands about everything. As far as I understood it, she pretty much is running the center and there are plans to expand. They opened in April. Her name is Margaret. Phone # to the center is 973-322-7272.

I did not have my screening done there as I didn't even suspect that I had it. The original dr that I saw diagnosed me with pancreatitis, so I moved on. I went to a great GI in Fort Lee, and he was wonderful. If you are interested in him, let me know and I will get the info for you on that, I dont have it handy right now.

He wanted me to go to the nutritionist at Columbia Presbyterian. At $200 an hour and they dont accept insurance, and driving over the bridge....(scary thought for me...) I couldn't justify it.

The Kogan Celiac center has a program called steps to sucess. It a 4 part package. I wont go complety into it, unless you are interested, I could fill a couple of pages....Again, let me know.

I live in Northern NJ. About an hour and a half from the city. Not sure where you are, but by all means, email me if you would like...taralb33@hotmail dot com. I'll give you as much info that I have, and if you are anywhere near me, what dr not to go to!!! :o I have to drive a distance to get to any decent dr. I've decided that I'm no longer seeing any one in my county for anything anymore. So its worth it for me to drive over an hour to see a good dr.

Any ?'s let me know

CCR Newbie
CCR
Posted

Thank you! That is incredibly helpful. I am planning to give the Kogan Center a call. My doctor offered me zero in the way of follow-up advice beyond "give up gluten."

:)

Carin

AndrewNYC Explorer
AndrewNYC
Posted
I have been to the Kogan Celiac Center at St Barnabas. I went after my diagnosis for nutritional counseling. They also do screening. They are in a hospital, so I dont think that "anyone with money" just opened the center.

The nutritionist that I saw was great. She also has Celiac which in my opinion was great. She understands about everything. As far as I understood it, she pretty much is running the center and there are plans to expand. They opened in April. Her name is Margaret. Phone # to the center is 973-322-7272.

I did not have my screening done there as I didn't even suspect that I had it. The original dr that I saw diagnosed me with pancreatitis, so I moved on. I went to a great GI in Fort Lee, and he was wonderful. If you are interested in him, let me know and I will get the info for you on that, I dont have it handy right now.

He wanted me to go to the nutritionist at Columbia Presbyterian. At $200 an hour and they dont accept insurance, and driving over the bridge....(scary thought for me...) I couldn't justify it.

The Kogan Celiac center has a program called steps to sucess. It a 4 part package. I wont go complety into it, unless you are interested, I could fill a couple of pages....Again, let me know.

I live in Northern NJ. About an hour and a half from the city. Not sure where you are, but by all means, email me if you would like...taralb33@hotmail dot com. I'll give you as much info that I have, and if you are anywhere near me, what dr not to go to!!! :o I have to drive a distance to get to any decent dr. I've decided that I'm no longer seeing any one in my county for anything anymore. So its worth it for me to drive over an hour to see a good dr.

Any ?'s let me know

Regarding celiac centers...there are three in the NYC metro area.

However, I do give these guys big credit for this: The Kogan Celiac center has a program called steps to sucess. It a 4 part package.

This is probably very helpful. People need a list of things that can go wrong and be associated with celiac that they can be checked out for. I'm not sure if that's what the steps for success are but it sounds like something to hold on to at least.

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

Celiac.com Sponsor (A8-M):


greeneyes33 Newbie
greeneyes33
Posted

As far as the Steps to Success program goes, part one I know is eliminating gluten from your diet. She goes over all things that have gluten in them, hidden gluten, etc...She gives you a huge 3 ring binder full of product listing and a folder full of other information. The first appointment is about an hour and a half. As far as the other 3 times that you go, I'm not quite sure, as I'm not really doing the "steps to success" program. I have been doing a lot of research on my own before I went to see her. She felt that I really didn't need the beginning step since I knew as much as I did and she didn't think it would be right to charge me for the whole package since I wasn't really going to do it the way it was designed. So I'm pretty much just going as an "as needed" basis.

I do know at the end of the program that they redo your bloodwork to see if your levels are improving. And then I think you can pretty much be on your own from there, or do yearly visits. I know that they do have a support group there, but it really is too far for me to drive for that. And I'm a chicken to drive anywhere...(hence my sentance about driving over the bridge before :))

She has also encouraged me to email her with any questions that I have, which I did send her an email, and she did get back to me that day, so again, it was a very positive experience for me and I'm so glad that I went. I left there feeling a lot more positive than I have since this diagnosis.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,258
    • Most Online (within 30 mins)
      7,748
    Celiacaf
    Newest Member
    Celiacaf
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Question on if i can contact my gastro doctor whenever?

      By Wheatwacked · Posted

      In the US you don't need a referal to see a specialist if you are self pay. PPO you can go directly to any specialist or doctor you prefer. HMO you’ll choose a primary doctor to manage all your care. Pricing of the insurance will vary, as will prescriptions coverage.  
    • trents
      Question on if i can contact my gastro doctor whenever?

      By trents · Posted

      Welcome to the forum, @lsky! In Canada I believe your healthcare system is totally socialized so I doubt if you have the option of making direct appointments with specialists. In the U.S. it is becoming more and more that way as most people here now are covered by some government managed healthcare network and almost all providers and specialists are part of those networks. Here and there you will find independent providers that take private pay only but it is the exception. Both in Canada and in the U.S. I believe there is a concerted effort to always keep the PCP in the loop.
    • lsky
      Question on if i can contact my gastro doctor whenever?

      By lsky · Posted

      I have had celiac disease since i was 7 and i've recently had worsening symptoms, I live in canada and the doctors right now are horrible so my general doctor never puts in my referrals or she does it wrong and i have to wait months-years for an answer. I was wondering I already have a Gastroenterologist, could i just contact him and ask to book an upcoming appointment? i'm not sure if it's different in canada or not.
    • trents
      Symptoms after ingesting gluten

      By trents · Posted

      Welcome to the forum @Juliana82! Bleeding where? Thanks for the articles on seronegative celiac disease. As I recall, one of our moderators is seronegative and has been faithful to draw our attention to this phenomenon at different times. The heterozygous factor seronegative celiac disease is an important factoid I believe.
    • Wrensmith
      Toddler Diagnosis?

      By Wrensmith · Posted

      With such a weak positive, his got may or may not be cleared in three months. My daughter when diagnosed at the age of seven had a TTG score of 388. It was 18 months on a gluten-free diet before her levels returned to normal. it seems to me that when you started something that allows your son to gain weight, as he clearly needs to do, you may want to keep doing it.  Sometimes you just need to figure out the science of it as you go along. Have you been tested?  That’s how I found out I had celiac disease, was after my daughter was diagnosed, and the recommendation given to me was that all of her first-degree relations should be tested as well. I came back with a weak positive when I was on a largely, though not entirely, gluten-free diet (cooking for my newly diagnosed child). good luck with everything.
×
×
  • Create New...