Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Doctor In Upstate Ny


  • Please log in to reply

9 replies to this topic

#1 JaneWhoLovesRain

 
JaneWhoLovesRain

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 116 posts
 

Posted 25 March 2012 - 03:37 AM

Does anyone know of a good doctor in upstate NY (Saratoga-Troy-Schenectady-Albany area) who is knowledgable in non-intestinal celiac? And by that I mean gluten ataxia and/or DH.
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

Celiac.com Sponsor:

#2 Meggielynn13

 
Meggielynn13

    Community Member

  • Advanced Members
  • PipPipPip
  • 39 posts
 

Posted 25 March 2012 - 06:39 AM

Irish Heart recommended Dr. Gusten to me. He works for Saratoga Schenectady Gastroenterology in all of their offices. I'm going to see him next week. He is great from what I've heard. DO NOT go to Dr. Boyar. He was my doctor and he was of no help to me. Having a positive Celiac test meant nothing to him. Good Luck!! :)
  • 0
Lactose Intolerant-2009
GERD, Hiatal Hernia and Gastritis-2011
GB removed-2011
Celiac positive DGP IgA-2012

Fatty Liver caused by Celiac/GB issues- 5/2012
Diagnosed with Celiac Disease "officially" after liver results came back normal from continuing gluten-free 11/2012

#3 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 March 2012 - 05:10 AM

Meggielynn beat me to it!! :lol:

Dr. William Gusten at Saratoga-Schenectagy Gastro. He has an office in Burnt Hills as well. He is very celiac-savvy, thorough, compassionate and patient-friendly. Great at follow-through.

He did not intend to be a "celiac expert", I do not think, but he is one as far as I am concerned.

I love this guy. I never say that about doctors and I do not trust them anymore. Except him. ;)

I highly recommend him -- just as he was recommended to me by another member when I asked the same question as you did! :)

PM me if you need more info.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 JaneWhoLovesRain

 
JaneWhoLovesRain

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 116 posts
 

Posted 26 March 2012 - 02:33 PM

Thank you for the referral Meggie and Irish. It's much appreciated. I know right where the BH office is. :)

IF I have celiac disease (nothing has been determined yet) it is showing in the form of dermatitis herpetiformis as well as vertigo issues. My intestines seem to be okay. Do you think he could still help me or should I be seeing some other kind of doctor?
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#5 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 March 2012 - 05:22 PM

Thank you for the referral Meggie and Irish. It's much appreciated. I know right where the BH office is. :)

IF I have celiac disease (nothing has been determined yet) it is showing in the form of dermatitis herpetiformis as well as vertigo issues. My intestines seem to be okay. Do you think he could still help me or should I be seeing some other kind of doctor?


Jane, DH IS celiac disease and if you have THAT, he is going to say you have the skin manifestation of celiac disease and he may want to biopsy you and make a DX. Yes, vertigo is a symptom of celiac disease. (I had it )

Are you still consuming gluten?

And YES, you need a good GI doctor to treat celiac disease. It is a disease of the GI tract--whom else would you see?

He is a VERY good GI doctor, believe me. :)

You say your intestines "seem to be okay"...meaning what? you have no overt gastro symptoms or you've been scoped and biopsied already and it was NEG? Because the absence of gastro symptoms does not mean you do not have celiac disease, as you may know.

"About one in 100 people in America has celiac disease, while about one in four of those will develop dermatitis herpetiformis Duhring, which occurs when celiac disease manifests cutaneously, in the skin. Dermatitis herpetiformis Duhring is uncommon in children, with only 5% of cases appearing in children younger than 7 years. Most often, it presents in people over forty."


You can get in for an appt. in the BH office faster. Call now. Why wait on this??
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 26 March 2012 - 05:29 PM

Jane, most celiacs with dh do not experience the gastro symptoms like those w/o dh. But that does not diminish the fact that we still have GI damage.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 26 March 2012 - 05:32 PM

Jane, most celiacs with dh do not experience the gastro symptoms like those w/o dh. But that does not diminish the fact that we still have GI damage.


Yeah, Betsy on that one.

As I'm finding out, later.....
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 March 2012 - 05:45 PM

From the Univ. of Maryland Center for Celiac Research:

Is it necessary to have an intestinal biopsy to confirm the diagnosis of Dermatitis Herpetiformis (DH)?

A skin biopsy is sufficient to confirm the diagnosis of DH.
DH is the skin manifestation of celiac disease.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 JaneWhoLovesRain

 
JaneWhoLovesRain

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 116 posts
 

Posted 26 March 2012 - 06:11 PM

You say your intestines "seem to be okay"...meaning what? you have no overt gastro symptoms or you've been scoped and biopsied already and it was NEG? Because the absence of gastro symptoms does not mean you do not have celiac disease, as you may know.


I mean I have no MAJOR gastro symptoms, but lots of minor ones which may or may not mean anything. I haven't yet been scoped and biopsied (except for colonoscopy, but I don't think that counts).

I'm not knowingly consuming gluten, I am probably getting cross contamination or maybe from soap/shampoo/mouthwash etc.

Good ideas and thoughts from everyone. Thank you very much! I'm learning a lot here.

I will give the doctor's office a call. At the least they hopefully can give me the name of a good dermo.

Great
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#10 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 March 2012 - 06:23 PM

I mean I have no MAJOR gastro symptoms, but lots of minor ones which may or may not mean anything. I haven't yet been scoped and biopsied (except for colonoscopy, but I don't think that counts).

I'm not knowingly consuming gluten, I am probably getting cross contamination or maybe from soap/shampoo/mouthwash etc.

Good ideas and thoughts from everyone. Thank you very much! I'm learning a lot here.

I will give the doctor's office a call. At the least they hopefully can give me the name of a good dermo.

Great


celiac disease is NOT Dxed via colonoscopy.

http://www.celiac.co...osed/Page1.html

You may not find a dermo who knows a darn thing about DH. A KNOWLEDGABLE GI doctor is your best bet.
But, it's your choice.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: