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

Doctor In Upstate Ny

JaneWhoLovesRain

By JaneWhoLovesRain
in Doctors

Recommended Posts

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

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.

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

Celiac.com Sponsor (A8-M):


Meggielynn13 Rookie
Meggielynn13
Posted

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!! :)

IrishHeart Veteran
IrishHeart
Posted

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.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

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?

IrishHeart Veteran
IrishHeart
Posted

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??

squirmingitch Veteran
squirmingitch
Posted

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.

pricklypear1971 Community Regular
pricklypear1971
Posted

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.....

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

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.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

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

IrishHeart Veteran
IrishHeart
Posted

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.

https://www.celiac.com/articles/5/1/How-is-celiac-disease-diagnosed/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.

Archived

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

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


  • Member Statistics

    • Total Members
      132,372
    • Most Online (within 30 mins)
      7,748
    cianb4121
    Newest Member
    cianb4121
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Russ H
      Coeliac UK Research Conference 2025

      By Russ H · Posted

      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • 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.