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

Frustrated! How Do I Find A Doctor Who Can Work With Me On This Issue?


Threebrainedbeing

Recommended Posts

Threebrainedbeing Rookie

I live in NYC, am frustrated as hell with all my symptoms, feel like a hypochondriac, and my doctor isn't really very supportive or aggressive with investigating what is going on with my system. When I had a different doctor no longer with the practice, she sent me to a nutritionist who put me on an elimination diet which seemed to indicate I was having a reaction to gluten.

There is obviously something systemic going on because I get blepharitus or severe puffy eyelids periodically that are itchy and look like I've aged 20 years, wheeziness which seems to have finally gone away after eliminating gluten, and when I cheated recently I got a horrible irritable bowel syndrome with severe constipation gas pain and mucus that was so bad that I went to a gastroentronologist who performed a colonoscopy which revealed nothing. It is finally calming down but it is still not totally back to normal, and it's been months. My doctor has done a celiac blood test which came up negative and nobody, not even the gastroentronologist seems to have heard of the enterolab.

I am frustrated and feel as though there is no support in the medical field. It is obvious to me I have a gluten issue and I suspect I also have a candida issue, because many of the symptoms seem to fit. I am wondering if anyone out there has a more supportive doctor who does more thorough testing, or knows how to find one. The practice I am going to is supposed to have a holistic bent, but I am left unsatisfied.


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

You might want to reevaluate if you really need a doctor for this. A doctor can't cure you, they know nothing about nutrition, there's no prescription that can help you with gluten sensitivity. I think what you have to do, what most of us did, was educate ourselves on the Internet, get our own testing or do dietary trials and figure it out on our own. The vast majority of MDs just aren't capable of dealing with this issue and it is a waste of time and money looking for one, IMHO.

kbtoyssni Contributor

It takes time to find a good doctor. I'd call around some of the doctors in your area and ask if they deal with celiac patients. Their response should give you a good indication of how open they will be to the disease. In my experience, younger doctors have been better. They're not set in their ways yet and tend to be open to alternative diagnoses. While you may not need a doctor to officially diagnose celiac, I prefer to have a doc who is aware of it since I will be seeing her at least once a year. I do not want to have a fight about celiac every time I go in and there are some conditions that are more common in celiacs that I'd like for her to be aware of.

Corsicana Grandma Rookie
I live in NYC, am frustrated as hell with all my symptoms, feel like a hypochondriac, and my doctor isn't really very supportive or aggressive with investigating what is going on with my system. When I had a different doctor no longer with the practice, she sent me to a nutritionist who put me on an elimination diet which seemed to indicate I was having a reaction to gluten.

There is obviously something systemic going on because I get blepharitus or severe puffy eyelids periodically that are itchy and look like I've aged 20 years, wheeziness which seems to have finally gone away after eliminating gluten, and when I cheated recently I got a horrible irritable bowel syndrome with severe constipation gas pain and mucus that was so bad that I went to a gastroentronologist who performed a colonoscopy which revealed nothing. It is finally calming down but it is still not totally back to normal, and it's been months. My doctor has done a celiac blood test which came up negative and nobody, not even the gastroentronologist seems to have heard of the enterolab.

I am frustrated and feel as though there is no support in the medical field. It is obvious to me I have a gluten issue and I suspect I also have a candida issue, because many of the symptoms seem to fit. I am wondering if anyone out there has a more supportive doctor who does more t

thorough testing, or knows how to find one. The practice I am going to is supposed to have a holistic bent, but I am left unsatisfied.

The doctor that I confer with is Carol Dalton, RN, NP. She works from the Helios Health Clinic in Boulder, Co. She is the one who cured the candida that I had for a dozen years - no other doctor could discover the problem. She discovered my gluten intolerance and casein allergy. She had me do the tests thru the EnterLab. She charges $120. a 30 minute session. Some of the best money I've ever spent.

Corsicana Grandma

Threebrainedbeing Rookie
I prefer to have a doc who is aware of it since I will be seeing her at least once a year. I do not want to have a fight about celiac every time I go in and there are some conditions that are more common in celiacs that I'd like for her to be aware of.

Thank you for understanding. This is exactlty why I'd like to have a doctor who is on board about this, and other holistic and preventative issues. I have been self-diagnosing for so long that it would be nice to have a doctor who can work with me on the issues to help me find the data I need, and there are certain conditions that can be actually worsened by being prescribed certain medications. I'd like to be treated holistically rather than piecemeal.

happygirl Collaborator

I don't have any personal experience with him, but have heard of Dr. Leo Galland in NYC, who deals with food issues and other more 'holistic' realms.

We have some NYC'ers on this board...maybe they will have some ideas?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Second chance

    2. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      13

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    3. - Scott Adams replied to JamieAnn's topic in Gluten-Free Restaurants
      2

      Jersey Mike’s option: Gluten-free bread

    4. - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      13

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,521
    • Most Online (within 30 mins)
      7,748

    CA1
    Newest Member
    CA1
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jmartes71
      Hello, I'm I crazy, nieve, or atomistic? I reached out to my former pcp of 25 years on the medical app today.Reading on the National Library of Medicine 75.6  physicians don't know celiac disease.To be fair he is primary and with the lack of knowledge, I did reach out because he was my Dr for 25 years.I do prefer his app than the one I currently have that was ignite of the disability celiac circus name chaser thanks to the one that  I currently have Since May 31, 2025 to present.
    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
×
×
  • 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.