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

Threebrainedbeing

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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.

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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?

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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