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

Help! - Need A Competent Doctor In Nyc


lucia

Recommended Posts

lucia Enthusiast

I saw a GI doctor after 3 months of wrenching, unable-to-leave-the-house symptoms. He is a highly-credentialed, university affiliated specialist in NYC. Yet he told me that GI symptoms and peripheral neuropathy do not coexist. I searched online and found out they do - in Celiac! (and a number of other diseases).

After an endoscopy, he diagnosed me with Lymphocytic gastritis. He said I was negative for Celiac since the biopsy did not show damage to the small intestine. For the peripheral neuropathy, he referred me to a neurologist.

Meanwhile I stopped eating gluten. My GI symptoms resolved within 5 days. My symptoms have also come back suddenly, but I could identify accidental "glutenings" when they did. It's been 6 weeks now struggling to stay gluten-free. I'm not all better yet. I'm exhausted. I have debilitating insomnia (a new development). I still have peripheral neuropathy.

I need to talk to a competent doctor. S/he doesn't have to be a GI doctor. I need to make sure that my blood is tested for Celiac, to know if the biopsy of my small intestine included multiple samples, to know if I'm nutritionally-depleted. And, maybe, to see a nutritionist.

I can't go to the Columbia center because I don't have blood work confirming a Celiac diagnosis. I do have excellent insurance, so I can pretty much go anywhere that takes insurance. Any advice would be appreciated.

  • 3 months later...

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



Celiac.com Sponsor (A8-M):



Aeva Rookie

Did you ever find someone? I live in Westchester, and am looking for someone too. Please let me know!

  • 3 weeks later...
quincy Contributor

I saw a GI doctor after 3 months of wrenching, unable-to-leave-the-house symptoms. He is a highly-credentialed, university affiliated specialist in NYC. Yet he told me that GI symptoms and peripheral neuropathy do not coexist. I searched online and found out they do - in Celiac! (and a number of other diseases).

After an endoscopy, he diagnosed me with Lymphocytic gastritis. He said I was negative for Celiac since the biopsy did not show damage to the small intestine. For the peripheral neuropathy, he referred me to a neurologist.

Meanwhile I stopped eating gluten. My GI symptoms resolved within 5 days. My symptoms have also come back suddenly, but I could identify accidental "glutenings" when they did. It's been 6 weeks now struggling to stay gluten-free. I'm not all better yet. I'm exhausted. I have debilitating insomnia (a new development). I still have peripheral neuropathy.

I need to talk to a competent doctor. S/he doesn't have to be a GI doctor. I need to make sure that my blood is tested for Celiac, to know if the biopsy of my small intestine included multiple samples, to know if I'm nutritionally-depleted. And, maybe, to see a nutritionist.

I can't go to the Columbia center because I don't have blood work confirming a Celiac diagnosis. I do have excellent insurance, so I can pretty much go anywhere that takes insurance. Any advice would be appreciated.

I go to Columbia but I brought with me the blood work confirming. However, you can have your GP write you the script for the Celiac AB panel. You can also call Columbia to ask them what specific tests they prefer to see. I know that some labs are better than others about the correct tests.

Charlie's Girl Apprentice

If I lived in NYC- I would see Dr. Leo Galland- Integrative Medicine MD. Google him-he has written a lot of articles, couple of books, has a website and seems to look at the whole patient.

That being said- I have only read his work and can't recommend him personally. But, I would definitely check him out if I were living in the city. I have considered flying in to see him if I can't get the help I need here.

Good luck. Let us know where you end up.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,826
    • Most Online (within 30 mins)
      7,748

    Gill.brittany8
    Newest Member
    Gill.brittany8
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
    • trents
      The only vegetable sources of B12 are some fermented bean products using a certain microbiotic culture. It is next to impossible to get adequate B12 from vegetable sources without supplementation. Same with D3. Some mushrooms can make D3 when exposed to UV light. Are you vegetarian or vegan? Do you do dairy and eggs or no animal products at all? Low B12 and D3 could definitely cause or contribute to many of the symptoms you have been experiencing but would not cause celiac disease. It is more likely the other way around, especially if you are a vegetarian eating no animal products. Many of your symptoms seem neurological in nature. It is well known that the B vitamin complex is vital to neurological health but so is D3. https://pmc.ncbi.nlm.nih.gov/articles/PMC9820561/
    • trents
      Russ, can you link an article supporting your assertion that small amounts of gliadin are detectable in human breast milk? Not doubting you but it would be nice to have the whole text for reference.
    • trents
      See attachment which is excerpted from this article:   
    • ABP2025
      Got it. Thanks Scott. I'll set up an appointment with a GI after the holidays and get all the celiac disease screening done. Thanks to this amazing forum and to all who have answered my question, I now know what my next steps are.
×
×
  • Create New...