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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.