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
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
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.