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Doctor Experiences In Nyc?

slee11211

By slee11211
in Doctors

Recommended Posts

slee11211 Apprentice
slee11211
Posted

Hi,

Just recently diagnosed, and would love to hear from others in NYC who have been through this. I've been in NYC for 19 yrs and have dealt with "domino effect" symptoms, as well as straight out Celiac symptoms the entire time

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lucia Enthusiast
lucia
Posted

You're in luck with the doctor who diagnosed you. By "new doctor," do you mean that s/he is young? Maybe that is best, since s/he will be up-to-date with all of the newest research. The medical community has made great strides in understanding celiac/gluten intolerance in just the past few years, never mind the last decade.

I live in NYC too. I ended up relying on the Celiac Center, but another doctor besides Peter Green. I wish I could say that my experience there was incredible and changed my life. But it wasn't that way. I think that Western medicine in general, even at its most advanced, is still pretty ignorant about autoimmune conditions.

By the time I went to the Celiac Center, I had already navigated the difficult (and frustrating) process of figuring out what was wrong with me. Ultimately, I self-diagnosed after a GI specialist (& medical school professor - yikes!) diagnosed me with gastritis and neuropathy but failed to recognize that these things together pointed to celiac. My doctor at the Celiac Center supported my self-diagnosis, which was a relief, but I was still quite sick and I didn't feel like she had the tools to address this. She put me through a battery of tests, all of which were negative, and sent me to a nutritionist who frankly was pretty useless since I had already figured out how to read labels and make substitutions for bread. To my surprise, the nutritionist was focused on very basic concepts for someone already on a gluten-free diet.

Incidentally, I did stumble onto a lecture at the Kripalu Center in Western Mass on "Gut Health" by a nutritionist with holistic leanings. It was great! The lecturer mentioned Dr. Mark Hyman several times, and since then I've reviewed some information online by this doctor. He is a leading influence in what's called "Functional Medicine". Personally, I would look into this, if I could. But functional doctors do not usually take health insurance since they feel it's important to spend more time with their patients than is possible with current insurance laws.

I am working with an acupuncturist now (also, not covered by health insurance ... sigh). I feel that Chinese medicine understands autoimmune conditions much better than Western medicine. I don't know where I'd be without it.

Good luck!

WinterSong Community Regular
WinterSong
Posted

I'm in NYC, as well, and I'm with Dr Michael Eng. My first appointment with him I said, "I think I might have Celiac Disease," and he agreed to test me right away. He's very nice and attentive, and I never have a difficult time scheduling appointments. I highly recommend him.

  • 5 months later...
nancycia Newbie
nancycia
Posted

i was wondering if anyone can tell me of a excellent celiac doctor in nyc, that's not dr.peter green (my insurance does not cover him)?

im currently seeing a doctor at the colombia celiac center and not happy with my doctor.

I was diagnosed 2 years ago in california and have moved to nyc and took a doctor in peter greens office thinking they would be good, since they are in the same office but im not happy with my doc.

Ive been on a gluten-free diet for 2yrs and still have symptoms of bloating and bad digestion etc....

I need a god celiac doc that can help me why i still have symptoms!

thanks!

AndrewNYC Explorer
AndrewNYC
Posted

I've seen Green and he is a good guy and good doc. The problem I think people perceive with him is that there is some magic bullet to treat celiac. There isn't. I think he gives probably the most comprehensive blood work around for celiac patients and he does a good exam. The only objective problem I have with his office is that its difficult to get an appointment.

I usually see James Marion here: Open Original Shared Link He knows his stuff well and he's been quite good at catching secondary issues I have had in addition to celiac and guiding me through them.

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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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