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

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

Threebrainedbeing

Recommended Posts

Threebrainedbeing Rookie
Threebrainedbeing
Posted

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
Nancym
Posted

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
kbtoyssni
Posted

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
Corsicana Grandma
Posted
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
Threebrainedbeing
Posted
  • Author
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
happygirl
Posted

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.

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


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...