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Guest celiacbuzzroom

By Guest celiacbuzzroom
in Doctors

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Guest celiacbuzzroom
Guest celiacbuzzroom
Posted

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 (Open Original Shared Link)

*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")

Keywords

anti-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

===================================================

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

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  • Replies 113
  • Created
  • Last Reply
Lisa Mentor
Lisa
Posted

No help here in North Carolina...still trying to seek a DR. who cares enough to do some research. <_<

Guhlia Rising Star
Guhlia
Posted

Frederick Saunders MD

Lancaster, Pennsylvania

Nooner Newbie
Nooner
Posted

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

Nantzie Collaborator
Nantzie
Posted

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

frenchiemama Collaborator
frenchiemama
Posted

Dr. Kristie Gering

Chippewa Falls, WI

She's fantastic.

KerriAnne Rookie
KerriAnne
Posted

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.

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jerseyangel Proficient
jerseyangel
Posted

Dr. John Kravitz in Mount Laurel, New Jersey.

Listened to my story and was open to testing me for Celiac.

KarenLee Rookie
KarenLee
Posted

Austin, Texas

Dr. Craig Lubin

Open Original Shared Link

celiac sucks Newbie
celiac sucks
Posted

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.

ehrin Explorer
ehrin
Posted

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.

Guest nini
Guest nini
Posted

Dr. Bill Meyer, Atlanta, GA

Pediatric Gastroenterology

Open Original Shared Link

he is active in our local Celiac support group and a really nice guy!

happygirl Collaborator
happygirl
Posted

Dr. Patricia Raymond

Hampton Roads/Norfolk/Virginia Beach

have not seen her myself, but have heard wonderful things about her. She is the advisory doc to the CSA group.

Mtndog Collaborator
Mtndog
Posted

Dr Marni Nicholas

Portsmouth, NH

Primary Care

Dr. catherine Cheney

Beth Israel

Celiac specialist

Boston/Lexington, MA

THEY BOTH ROCK!!!!!!!!!!!!!!!!

jlinc Rookie
jlinc
Posted

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.

TriticusToxicum Explorer
TriticusToxicum
Posted

Dr. Thomas Brasitus

Dr. Nancy Merrill

GI's M.I. Bassett Hospital, Cooperstown, NY

  • 2 weeks later...
Susan M-G Rookie
Susan M-G
Posted

Dr. Karen Nepveu, Rheumatologist

Colchester, Vermont

Mamato2boys Contributor
Mamato2boys
Posted

Dr. Alwyn Koil (NM Pediatrics) & Dr. Thomas Rothfeld (Presbyterian)

both of Albuquerque, NM

both general pediatricians and WONDERFUL doctors - very nice. Dr. Koil not totally sold on Enterolab because he's not familiar with them, but is very supportive and interested.

Dr. Jay Jacobi (SW Medical)

General practitioner - also of Albuquerque

I haven't had occasion to tell him about my family going gluten-free yet, but I fully expect him to be supportive when I do.

I wanted to add Dr. Jeffrey Fahl with the University of New Mexico. I haven't seen him myself, but we work for the same Univeristy and he is a VERY nice guy.

jayhawkmom Enthusiast
jayhawkmom
Posted

Dr. William Buser - GI - Gastrointestinal Center of Kansas City

&

Dr. Jose Cocjin - Pediatric GI - University of Kansas Medical Center

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Dr. Michele (pronounced "Michael") Monaco, pediatric cardiologist, Danville, PA and State College, PA

Dr. James Rodrigues, pediatrician with Bellevue Peds, Pittsburgh PA

Guest AutumnE
Guest AutumnE
Posted

Dr. Gale Cookingham- Allergist and she has celiac disease herself and was tested and suppourtive of enterolab. Flint, michigan office on fridays and port huron office monday through thursday.

azmom3 Contributor
azmom3
Posted

***ARIZONA***

Dr. Shimamoto, SanTan Allergy and Asthma, Mesa (or Gilbert?), Arizona -- This is the single best doctor I have ever known! All 3 of our kids are being treated by him. He is the most down-to-earth, easy-going, yet extremely knowledgeable person you'd ever meet. My kids love going to him and the 35 minute drive to his office is so worth it. I would probably drive 2 hours to go to this guy if I had to...just can't say enough. It took 7 months and 4 doctors to make even a slight dent in my youngest son's issues. I had more answers in my first visit with this doctor than I did with all the rest put together.

Dr. Nancy Yokois, Pediatric GI, Scottsdale, AZ -- We've only been to her once. She was patient, extremely thorough, answered all our questions, very knowledgeable of celiac and eosinophilic disorders. No one can compare to Dr. Shimamoto, but she does come in a close second and I would highly recommend. She came highly recommended to us by several different people and it's easy to see why once you meet her.

GFinVA Newbie
GFinVA
Posted

Jeffrey Retig

Bryn Mawr, PA (Philadelphia suburb)

He's an excellent doctor and an extremely patient man - I highly recommend him!

fairydust Newbie
fairydust
Posted

I see Dr. Peter Green in New York.

jmengert Enthusiast
jmengert
Posted

Dr. Mark Ringold

Christiansburg, Virginia

Absolutely wonderful--probably the best doctor of any speciality that I've ever seen.

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      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
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    • More2Learn
      Celiac Maybe a Possibility?

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