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How To Deal With Ignorance...

BRS-07

By BRS-07
in Doctors

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BRS-07 Rookie
BRS-07
Posted

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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LDJofDenver Apprentice
LDJofDenver
Posted

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.

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

BRS-07 Rookie
BRS-07
Posted
  • Author
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.

https://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.

  • 3 weeks later...
Saffy Newbie
Saffy
Posted

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?

  • 3 weeks later...
ann72601 Apprentice
ann72601
Posted
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.

captaincrab55 Collaborator
captaincrab55
Posted
.

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

https://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...

JNBunnie1 Community Regular
JNBunnie1
Posted
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.

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
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      By catnapt · Posted

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    • trents
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