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La Celiac Specialist?

HippyGirl84

By HippyGirl84
in Doctors

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HippyGirl84 Rookie
HippyGirl84
Posted

Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

2. Can I see a specialist without my insurance co finding out? (b/c they will drop me if they find i have Celiac...it took me a yr to get THIS ins i have now b/c no one would take me that knew of the bloodwork i had done for celiac!)

3. Has anyone else had severe problems like shaking (sometimes as intense as mini seizures), persisting daily nausea, malnutrition (despite the B12 shots i get every 10 days), teeth enamel loss and incredible fatigue even after a YEAR of strictly monitoring their food intake and being as gluten free as humanly possible?

I appreciate the help! thanks in advance!

HippyGirl84

  • 2 weeks later...
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VioletBlue Contributor
VioletBlue
Posted

I can't help you with personal experience. I had to push for a blood test and even then the doctors I saw weren't very helpful. I live in the Inland Empire area and have no doctors to recommend out here.

But here are a couple places to start. And if you can get into see an Internist or Gastroenterologist at UCLA I have been very impressed with the doctors there in the past.

https://www.celiac.com/articles/277/1/Unite...tors/Page1.html

Also, you might try emailing or calling someone at the Celiac Disease Foundation, Celiac dot org. They are located in Los Angeles, in the Valley I believe. They would probably be able to suggest a couple doctors.

quote name='HippyGirl84' date='Aug 27 2008, 08:17 PM' post='461092']

Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

2. Can I see a specialist without my insurance co finding out? (b/c they will drop me if they find i have Celiac...it took me a yr to get THIS ins i have now b/c no one would take me that knew of the bloodwork i had done for celiac!)

3. Has anyone else had severe problems like shaking (sometimes as intense as mini seizures), persisting daily nausea, malnutrition (despite the B12 shots i get every 10 days), teeth enamel loss and incredible fatigue even after a YEAR of strictly monitoring their food intake and being as gluten free as humanly possible?

I appreciate the help! thanks in advance!

HippyGirl84

  • 2 weeks later...
nasalady Contributor
nasalady
Posted
Hi, I have been living in California for about a yr and a half during which I uncovered the devastatingly long and frustrating truth that i had been suffering from Celiac disease. Being 23, and working to just get by in a big city, I didn't have health ins so i paid out of pocket for the blood work....now I have some insurance and want to see a specialist (b/c after a yr of being strictly gluten free i am still having issues)....

so my questions are:

1. Does anyone know of a GOOD Celiac/Gastro Dr. in the L.A./San Fernando Valley area?

He's not exactly in the LA/SF Valley area, and I've only seen him once so far, but I'm VERY impressed with Dr. Peter Rosenberg in Pasadena. He is a gastro who immediately ordered the full celiac bloodwork panel with DNA typing from Prometheus for me, just because I told him (1) about doing a gluten-free diet for a short time then going back on gluten and having my mouth break out with sores, and (2) that my 4 year old granddaughter has been diagnosed with celiac disease via biopsy. I'm still waiting for the results.

Good luck!

JoAnn

Nancym Enthusiast
Nancym
Posted

Why would your insurance company drop you? I don't think they can, unless they can prove you lied on your application. A whole bunch of companies got into trouble recently over claiming people lied on their apps that really didn't, so they'll probably err on the side of the consumer for awhile.

  • 1 month later...
TimothyRyan Rookie
TimothyRyan
Posted

hey hippiegirl,

i know its november, and maybe you've found a doc, but i am in LA, and also a celiac, so i thought i'd give you my reccomendation.

I see Dr. Wilfred Weinstein at UCLA. who is quite amazing. but also really, really hard to get into see for an appointment. (but thats cuz he's so busy, and good docs are busy docs)

you'll end up waiting a month or 2 for an appointment, most likely. but also, if you call his office, they will recommend another doc that studied under Dr. Weinstein who also has clinical interest in Celiac.

I hope this helps. I have been celiac/gluten free for 6 years, and recently started experiencing problems again this whole past year. Blood tests showed no GLUTEN, so im good on my diet. trying to figure out what has changed! its so frusterating.

Tim

Lindaa Newbie
Lindaa
Posted

Im also 23 and a new Celiac. I live in the Orange County area of CA and have been having some trouble finding a good MD myself. Everyone Ive met so far seems very apathetic to celiac disease. I hope you have already found a good specialist in LA since its now november & you posted this awhile back. Good Luck with your insurance company as well, hippiegirl.

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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