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Posted 14 October 2006 - 03:38 PM
I FOUND THIS............I WILL TRY THIS (VITAMIN E)
IN MY CASE, I HARDLY WALK.
Case of the Month
Reversible inflammatory and vacuolar myopathy with vitamin E deficiency in celiac disease Kleopas A. Kleopa, MD, Kyriacos Kyriacou, PhD, Eleni Zamba-Papanicolaou, MD, Theodoros Kyriakides, FRCP Department of Clinical Neurosciences, Cyprus Institute of Neurology and Genetics, P.O. Box 23462, Nicosia, Cyprus
Department of Electron Microscopy and Molecular Pathology, Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus
email: Theodoros Kyriakides (theodore@cing.ac.cy)
*Correspondence to Theodoros Kyriakides, Department of Clinical Neurosciences, Cyprus Institute of Neurology and Genetics, P.O. Box 23462, Nicosia, Cyprus
setDOI("ADOI=10.1002/mus.20144")
Keywordsanti-gliadin antibodies • ataxia • gluten enteropathy • inclusion-body myopathy • malabsorption • neuropathy
Abstract
We report a patient with late-onset celiac disease and neurological manifestations including myopathy, polyneuropathy, and ataxia.
Laboratory investigations showed anti-gliadin antibodies and severe vitamin E deficiency.
Muscle biopsy revealed inflammatory infiltrates and rimmed vacuoles, similar to those found in inclusion-body myositis.
A gluten-free diet and vitamin E supplementation reversed both the clinical neurological manifestations and the abnormalities in the muscle biopsy.
Anti-gliadin antibodies were no longer present.
This case illustrates the spectrum of neurological complications of celiac disease and documents the occurrence of reversible pathology resembling inclusion-body myopathy in the muscle. Muscle Nerve 2004
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Let's cut the chase for those who are suffering and let them see who has helped you in your State.
I am In Salem, Or. and this Neurologist below helped me before any MD would.
Dr. Benton Davidson
Salem, Oregon
He tested for Vitamin K.
I had 2 years with my MD who would not do any testing.
I slipped hehind his back and got to this Neurologist.
Bye
Recommend A Doctor In You State
Cut The Chase Here!
Rate Topic:
#2
Lisa 
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Posted 14 October 2006 - 04:59 PM
No help here in North Carolina...still trying to seek a DR. who cares enough to do some research. 
Lisa
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
Celiac.com - Celiac Disease Board Moderator
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
Celiac.com - Celiac Disease Board Moderator
#4
Nooner
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Posted 15 October 2006 - 01:02 PM
Dr Daniel McGuire
South Florida Gastro Associates
Boynton Beach Florida (in Palm Beach County)
He accepted my Enterolab results, and based on that, my history and dietary response, diagnosed me. He was recommended by the local CSA of America support group.
~Li
South Florida Gastro Associates
Boynton Beach Florida (in Palm Beach County)
He accepted my Enterolab results, and based on that, my history and dietary response, diagnosed me. He was recommended by the local CSA of America support group.
~Li
~Li
Celiac, dx Sep 2006
Celiac, dx Sep 2006
#5
Nantzie
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Posted 15 October 2006 - 09:36 PM
Patricia Chen, MD Internal Medicine
Citrus Heights, CA
Doesn't think she's God. Considers the doctor patient relationship a team. Wants to hear what you have to say. Never made me feel like I was a hypochondriac.
Dr. Vallero, MD GI
Roseville and Carmichael, CA
Didn't make me feel like a hypochondriac. Didn't seem too sold on the celiac thing, but completely open and not confrontational or critical at all. I had the biopsy done, but more to check and make sure there wasn't anything more scary causing my symptoms. At my followup appt, he said that he had other patients who had negative biopsies but positive dietary response and to keep doing what I was doing. He said that I figured it out on my own.
Yinka Davies, MD Pediatric GI
Roseville, CA and Downtown Sacramento, CA
I had already put Jenny gluten-free for over a month when we had our appt. Told her the whole story and that I put her gluten-free because of Enterolab testing and how much better Jenny was doing. She was very interested and seemed to enjoy hearing about Jenny's before and after. All she said about the biopsy was that she was just asking because it was the gold standard, and <I didn't want to have the biopsy for Jenny did I?> I told her no. She said great. So all we're doing is blood work twice a year to make sure she's not developing any other related issues.
.....................
I've been very, very lucky with finding great MDs. I know how rare that is on this board. I really don't think that our GP's would have ever brought celiac/gluten intolerance up on their own, but when I brought it up, they went down that path right along with me.
Nancy
Citrus Heights, CA
Doesn't think she's God. Considers the doctor patient relationship a team. Wants to hear what you have to say. Never made me feel like I was a hypochondriac.
Dr. Vallero, MD GI
Roseville and Carmichael, CA
Didn't make me feel like a hypochondriac. Didn't seem too sold on the celiac thing, but completely open and not confrontational or critical at all. I had the biopsy done, but more to check and make sure there wasn't anything more scary causing my symptoms. At my followup appt, he said that he had other patients who had negative biopsies but positive dietary response and to keep doing what I was doing. He said that I figured it out on my own.
Yinka Davies, MD Pediatric GI
Roseville, CA and Downtown Sacramento, CA
I had already put Jenny gluten-free for over a month when we had our appt. Told her the whole story and that I put her gluten-free because of Enterolab testing and how much better Jenny was doing. She was very interested and seemed to enjoy hearing about Jenny's before and after. All she said about the biopsy was that she was just asking because it was the gold standard, and <I didn't want to have the biopsy for Jenny did I?> I told her no. She said great. So all we're doing is blood work twice a year to make sure she's not developing any other related issues.
.....................
I've been very, very lucky with finding great MDs. I know how rare that is on this board. I really don't think that our GP's would have ever brought celiac/gluten intolerance up on their own, but when I brought it up, they went down that path right along with me.
Nancy
The person who says it cannot be done should not interrupt the person who is doing it.
~Chinese Proverb
~Chinese Proverb
#6
frenchiemama
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Posted 15 October 2006 - 09:40 PM
Dr. Kristie Gering
Chippewa Falls, WI
She's fantastic.
Chippewa Falls, WI
She's fantastic.
Carolyn
"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson
#7
KerriAnne
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Posted 16 October 2006 - 02:23 PM
Dr. Jeffrey Stein
Columbia Presbyterian
New York, NY
212-305-5444
WONDERFUL!!!
He's a one-man show... he does it all from taking your basic vitals to prescribing Rx and diagnostic testing. Kind, compassionate human being. He's very cautious and thorough.
Columbia Presbyterian
New York, NY
212-305-5444
WONDERFUL!!!
He's a one-man show... he does it all from taking your basic vitals to prescribing Rx and diagnostic testing. Kind, compassionate human being. He's very cautious and thorough.
~Kerri
Diagnosed (positive Abs & biopsy): May 2004 at 24 years old
Diagnosed (positive Abs & biopsy): May 2004 at 24 years old
#8
jerseyangel
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Posted 16 October 2006 - 02:37 PM
Dr. John Kravitz in Mount Laurel, New Jersey.
Listened to my story and was open to testing me for Celiac.
Listened to my story and was open to testing me for Celiac.
Patti
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
#10
celiac sucks
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Posted 17 October 2006 - 11:13 AM
Stefano Guandalini, MD Chicago Illinois
This man is amzaing!! He is the head of research at Chicago and travels around the world for research, but he is only a pediatric docotr.
This man is amzaing!! He is the head of research at Chicago and travels around the world for research, but he is only a pediatric docotr.
-Maggie-
#11
ehrin
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Posted 17 October 2006 - 11:22 AM
Dr. Richard Schwartz
190 Groton Rd, Ayer MA
(978) 772-7500
I also cannot say enough good things about my GI doc.
I went in complaining of severe bloating after eating - I didn't even know what celiac disease was.
Because I am a T1 diabetic he suspected diabetic gastroparesis and did an upper endoscopy to see if my stomach was dumping it's food. Well while he was in there he decided to do a biopsy of my intestine- I did not know he was doing this. Well low and behold gastro was ruled out and the "most abnormal biopsy I've ever seen" confirmed the Celiac dx.
For those in MA/NH - Ayer is located in the Northern Central part of the state.
190 Groton Rd, Ayer MA
(978) 772-7500
I also cannot say enough good things about my GI doc.
I went in complaining of severe bloating after eating - I didn't even know what celiac disease was.
Because I am a T1 diabetic he suspected diabetic gastroparesis and did an upper endoscopy to see if my stomach was dumping it's food. Well while he was in there he decided to do a biopsy of my intestine- I did not know he was doing this. Well low and behold gastro was ruled out and the "most abnormal biopsy I've ever seen" confirmed the Celiac dx.
For those in MA/NH - Ayer is located in the Northern Central part of the state.
My name is forgettable, so I invite you to remember this tale." (RG)
Diagnosed with celiac disease, by biopsy, 10/05
T1 diabetic since 2/80
Diagnosed with celiac disease, by biopsy, 10/05
T1 diabetic since 2/80
#12 Guest_nini_*
Posted 17 October 2006 - 01:48 PM
Dr. Bill Meyer, Atlanta, GA
Pediatric Gastroenterology
http://www.ccdhc.org...ors/meyers.html
he is active in our local Celiac support group and a really nice guy!
Pediatric Gastroenterology
http://www.ccdhc.org...ors/meyers.html
he is active in our local Celiac support group and a really nice guy!
#14
Mtndog
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Posted 17 October 2006 - 05:32 PM
Dr Marni Nicholas
Portsmouth, NH
Primary Care
Dr. catherine Cheney
Beth Israel
Celiac specialist
Boston/Lexington, MA
THEY BOTH ROCK!!!!!!!!!!!!!!!!
Portsmouth, NH
Primary Care
Dr. catherine Cheney
Beth Israel
Celiac specialist
Boston/Lexington, MA
THEY BOTH ROCK!!!!!!!!!!!!!!!!
***************************
Beverly
Gluten free since 2005
In the midst of winter, I found there was within me an invincible summer.
Albert Careb
Beverly
Gluten free since 2005
In the midst of winter, I found there was within me an invincible summer.
Albert Careb
#15
jlinc
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Posted 18 October 2006 - 08:05 AM
Great topic! I was just thinking I need to find a new doc, because of recurring kidney pain.
Does anyone have a suggestion for Portland, OR?
Thanks for any help you can give.
Josh.
Does anyone have a suggestion for Portland, OR?
Thanks for any help you can give.
Josh.
Diagnosed celiac 2003.
Dairy-free since 2007.
Still struggling day by day to stay gluten-free.
Dairy-free since 2007.
Still struggling day by day to stay gluten-free.
