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jj929

Celiac Doctors In Northern Nj Or Nyc & Best Diagnosis Methods

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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

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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


diagnosed 6/08 by biopsy

son diagnosed 7/08 by biopsy

niece diagnosed 10/08 by biopsy

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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


diagnosed 6/08 by biopsy

son diagnosed 7/08 by biopsy

niece diagnosed 10/08 by biopsy

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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


Female,37

Diagnosed by biopsy first, then bloodwork

Gluten free since 7/08

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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


diagnosed 6/08 by biopsy

son diagnosed 7/08 by biopsy

niece diagnosed 10/08 by biopsy

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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.

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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.


Female,37

Diagnosed by biopsy first, then bloodwork

Gluten free since 7/08

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