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How To Deal With Ignorance... Serious Need of an Educated Doctor in St.Louis, MO Rate Topic: -----

#1 User is offline   BRS-07 

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Posted 25 June 2009 - 10:41 AM

I have been having all sorts of problems since going gluten free and my doctors don't seem to even try to figure out what is going on. I have tested out about 10 different doctors in less than a year (been on diet 3 months) and can not find one that has any useful information. I've been going lightheaded for almost a year now, have seen 6 doctors about that in particular and they'll test for one thing here or there and then dismiss all together or send me to another doctor. I'm at my wits end and about ready to explode at the next doctor who picks one symptom out of all of the things going on and writes out a prescription for something that doesn't even make sense with any of them. Sorry for the rant, but does anyone know of a descent doctor in the west st.louis area? Or any advice on dealing with rediculous doctors that obvioulsy don't have a clue?
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#2 User is offline   LDJofDenver 

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Posted 25 June 2009 - 11:19 AM

Found these numbers on the Celiac Sprue Association site, contacts for a Missouri CSA Chapter, St. Louis area: Hopefully they can give you some guidance.

CSA St. Louis Chapter #06
Barb Berger, Chesterfield
314/532-3075

Sharon Biondo, St. Louis
636/225-3947

Our Denver local chapter has a list of doctors that are known to understand, treat, diagnose Celiac disease.

And here's a link to a celiac.com page that lists doctors by State - it's a couple years old though.

http://www.celiac.com/articles/277/1/Unite...tors/Page1.html
Diagnosed 8-8-08 (I think I'll remember that date!)
Positive blood panel
Endoscopy a little later on confirmed, via Small Intestine Biopsy
Adult son diagnosed Celiac in his late 20s
Suspect my Mother undiagnosed Celiac
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#3 User is offline   BRS-07 

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Posted 25 June 2009 - 12:06 PM

View PostLDJofDenver, on Jun 25 2009, 12:19 PM, said:

Found these numbers on the Celiac Sprue Association site, contacts for a Missouri CSA Chapter, St. Louis area: Hopefully they can give you some guidance.

CSA St. Louis Chapter #06
Barb Berger, Chesterfield
314/532-3075

Sharon Biondo, St. Louis
636/225-3947

Our Denver local chapter has a list of doctors that are known to understand, treat, diagnose Celiac disease.

And here's a link to a celiac.com page that lists doctors by State - it's a couple years old though.

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



Thank you! I've been trying to find someone to contact but with no luck.
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#4 User is offline   Saffy 

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Posted 13 July 2009 - 02:52 AM

Its so frustrating isnt it!!

I hope you find someone with that link. Im in the UK and im really struggling to find answers and the doctors are treating me so badly i leave in tears every time.

I know its complicated but they could at least treat us with respect!

Does anyone have any links for doctors in the UK?
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#5 User is offline   ann72601 

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Posted 01 August 2009 - 08:32 PM

View PostBRS-07, on Jun 25 2009, 11:41 AM, said:

I have been having all sorts of problems since going gluten free and my doctors don't seem to even try to figure out what is going on. I have tested out about 10 different doctors in less than a year (been on diet 3 months) and can not find one that has any useful information. I've been going lightheaded for almost a year now, have seen 6 doctors about that in particular and they'll test for one thing here or there and then dismiss all together or send me to another doctor. I'm at my wits end and about ready to explode at the next doctor who picks one symptom out of all of the things going on and writes out a prescription for something that doesn't even make sense with any of them. Sorry for the rant, but does anyone know of a descent doctor in the west st.louis area? Or any advice on dealing with rediculous doctors that obvioulsy don't have a clue?

I was wondering if you have found a doctor yet? I live near your area and have recently started seeing a ND. It seemed to make sense to find someone to help with diet and someone to help with the medical issues that are a result of the celiac. I really don't think mainstream doctors are informed on diseases like this: they're not trained in wellness or nutrition. If a drug can't fix it, it don't get fixed. It has been my experience, after 10 years of this, to have a team, not just an MD.
Hope you are doing okay.
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#6 User is offline   captaincrab55 

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Posted 02 August 2009 - 06:21 AM

View PostLDJofDenver, on Jun 25 2009, 03:19 PM, said:

.

And here's a link to a celiac.com page that lists doctors by State - it's a couple years old though.

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

Just clicked on the above Doctor list link and reviewed the Maryland Doctors. I found a Doctor (Therapeutic endoscopy & Gastroenterology) on the list that ran some tests on me about 2-1/2 years ago, but missed CELIAC Disease.. My Dermotoligist that diagnosed me with DH & celiac disease wants me to get my Gut checked out. I wasn't sure that I wanted to get my Gut checked by the same Doctor, until I saw him on the list.

Thanks for Posting that link...
I'm a New Man Without GLUTEN!
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#7 User is offline   JNBunnie1 

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Posted 08 August 2009 - 01:43 PM

View Postcaptaincrab55, on Aug 2 2009, 10:21 AM, said:

Just clicked on the above Doctor list link and reviewed the Maryland Doctors. I found a Doctor (Therapeutic endoscopy & Gastroenterology) on the list that ran some tests on me about 2-1/2 years ago, but missed CELIAC Disease.. My Dermotoligist that diagnosed me with DH & celiac disease wants me to get my Gut checked out. I wasn't sure that I wanted to get my Gut checked by the same Doctor, until I saw him on the list.

Thanks for Posting that link...

The test used during edoscopy is extremely fallible. I was about as sick as it is possible to get and still be alive, and mine came up 'negative'. If the doc's any good, he should know that though.
Our goal is wellness, not just freedom from disease.
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