Recommend A Doctor In You State

[Discovery]

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

THANK YOU THANK YOU THANK YOU! This is WONDERFUL information. :)

[Discovery]

Does anyone know of a GOOD doctor in Glendale, CA?? I have been to more quacks than ever imagined, from HMOs to out-of-pocket docs...I finally ordered all lab tests on my own and am waiting for package to come in the mail. I have cut out the middle-man (doctor) in that regard, but would still like a GOOD one to help me on my lone journey....I am doctor, patient, nutritionist and insurance company (payer) and this disease is in the ring with me, how the heck am I gonna get through this? My dad had ALL the symptoms I have and he was never diagnosed and died in his 70's from colon cancer...poor man, so much suffering.

thank you for listening, really gotta get this out somehow, because don't have a friend in sight that is going thru any of this strife.

[JulesH]

I just want to recommend my doctor, Dr. Bill Kirsh, in Miami, FL. He's not a celiac expert or anything, but he's excellent at diagnostics. My whole family goes to him, and he always goes above and beyond what other doctors do. Never takes the easy way out when coming up with a diagnosis.

He actually works with Dr. Agatson, the South Beach Diet guy, but I would definitely consider Dr. Kirsh the better doctor in the practice, at least in bedside manner. Agatson never has any idea who you are or what your history is without looking at his chart a million times. Kirsh actually remembers you and your family and everything.

He was also happy to run vitamin deficiency tests when I had an eye issue and the opthamologist decided I was vitamin B deficient. (I wasn't, but I was vitamin D deficient.)

[mumseyh]

My sister needs a doctor in the Detroit area who accepts HAP insurance. She has not been diagnosed yet, but has many symptoms like mine. She would prefer someone out of St. Mary's or Henry Ford Hospital. Any suggestions? I have not lived there in many years so I am not familiar with anyone. Thanks

[itchygirl]

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

I can't help you with North Carolina but if you'd care to hop over to South Carolina everybody at MUSC Digestive Disease Center has been great

Open Original Shared Link

My primary doc recently retired but if you call you should find someone sensible

Their diet sheet is kind of amusing. Oh look, you can eat a dead fish!

Open Original Shared Link

Nobody actually gave me this, however, I just found it online just now.

[Puddy]

Does anyone know of a doctor in Nassau County on Long Island, NY? Thanks. (I'll even take somone in western Suffolk County.)

[Dennis wayne]

Dr. Kristie Gering

Chippewa Falls, WI

She's fantastic.

i believe that the name under that quote is Raoul Duke.

[Guest mjhere]

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

[Guest mjhere]

I had an appointment with Dr Benten Davidson, and had to cancel because I was so sick. Reading your report on his knowledge of celiac, I am going to make another appointment, as my md isnt doing anything. could you please email me and let me know how it helped,..Mary mjhere

[hapy4dolphins]

Dr.Safwan Malas, MD

1200 E. Michigan Ave

Suite 460

Lansing MI 48906

ph 517-364-5490

A peds. gastro doc. Very familiar with celiac and food allergies. He came to speak at our group last year and my son just saw him last week.

[rick-spiff]

Jon Mundall

preventitave medicine

conell,wa and visits vancouver, wa

Open Original Shared Link

Virginia Frazer

ND/Midwife

Kennewick, wa/grandview, or

dr. mundall has been my mom's dr since early 90's. virginia delivered my babies and is our only dr. we went in for allergy tests and the gluten was very high so we were diagnosed very easily. both listen to all questions and are very good!! Highly recommended!!

[pljahr]

Do you have Inclusion Body Myositis?

[babinsky]

Dr. Yen Lai

Pomona, California

I was her first Celiac case, but she refused to give up until she found out what was wrong with me....she knew I was very sick, just didn't know what it was. Since my diagnosis she has been trying to research the disease and she told me last time I was in that she now tests all patients with "suspect symptoms" I wish all doctors were as caring and concerned!

Donna

[mimommy]

Dr. Truding, Pediatric GI

Royal Oak Beaumont Hospital

Royal Oak, Michigan

Thank you, thank you, thank you Dr. Truding!

[Country Girl]

Dr. Elizabeth Schaeffer with St. Vincent Hospital in Indianapolis is fabulous pediatric GI doctor. She even spent an half-hour on the phone with me on a Sunday b/c I had questions

[diannalynn0711]

Hi,

I'm new to the forum. I am hoping that someone can help me. I have recently decided to move to the northwest part of ohio. I moved from Pittsburgh, Pa. I can not drive the 6 hours to get to my doc back home that was excellent with celiac. Is there any chance that anyone knows of a doc that has some knowledge of celiac in the toledo, fort wayne, lima area? I would appreciate any information anyone has. I have tried so many doctors in this area and it seems that I know more than they do and I'm tired of having to tell them what is what and what to do rather than them knowing.

Thanks

[mindiloo]

Dr. Murdocco

360 Kingstown Rd

Narragansett, RI 02882

401 789 0226

He has Celiac himself and was the first person, after six years of tests and "I don't know"s from other doctors, to even consider the possibility of Celiac. He's awesome, understanding, and really nice.

[diannalynn0711]

Dr. Murdocco

360 Kingstown Rd

Narragansett, RI 02882

401 789 0226

He has Celiac himself and was the first person, after six years of tests and "I don't know"s from other doctors, to even consider the possibility of Celiac. He's awesome, understanding, and really nice.

I am in Ohio.... RI isnt close to me Toledo, oh Lima, oh and fort wayne, in are an hour away from me..... I'm hoping to find a doctor within an hour or so of me.

[jaime1103]

Central New Jersey

Dr. Armen Simonian

416 Bellevue Ave

Mercer Gastroenterology

Trenton, NJ 08618

Highly recommended!

[SLB5757]

Hi,

I'm new to the forum. I am hoping that someone can help me. I have recently decided to move to the northwest part of ohio. I moved from Pittsburgh, Pa. I can not drive the 6 hours to get to my doc back home that was excellent with celiac. Is there any chance that anyone knows of a doc that has some knowledge of celiac in the toledo, fort wayne, lima area? I would appreciate any information anyone has. I have tried so many doctors in this area and it seems that I know more than they do and I'm tired of having to tell them what is what and what to do rather than them knowing.

Thanks

If you find anyone in this area, or get any responses PLEASE let me know. I am almost 100% sure that Celiac is what I have and cannot get anyone to do testing:( Even though having a wheat allergy come up positive, the primary care doc here states that I cannot have Celiac because it is a malabsorption disease and I am gaining weight. He said back when I was 92 lbs. two years ago they would have considered it, but now that I am 105 it couldn't be malabsorption?? I have always been small and I do not feel my weight has any bearing on whether I have Celiac or not. The docs just want to write me off as IBS...and I am not accepting it. Ughhh....Ohio docs

[diannalynn0711]

If you find anyone in this area, or get any responses PLEASE let me know. I am almost 100% sure that Celiac is what I have and cannot get anyone to do testing:( Even though having a wheat allergy come up positive, the primary care doc here states that I cannot have Celiac because it is a malabsorption disease and I am gaining weight. He said back when I was 92 lbs. two years ago they would have considered it, but now that I am 105 it couldn't be malabsorption?? I have always been small and I do not feel my weight has any bearing on whether I have Celiac or not. The docs just want to write me off as IBS...and I am not accepting it. Ughhh....Ohio docs

Well I haven't been able to find a specialist. The closest I found was in Chicago... but i found a Nurse Practitioner in Defiance Hospital off Sessions St that is willing to do tests and learn and she is looking for a specialist for me. She is really awesome! Id recommend her as a primary doctor, but for anything that involves scopes she would have to refer you to a specialist. One thing though, are you still eating gluten? The test will not help if you have cut gluten out of your system you must continue on gluten. But she would definitely run the tests if you went to her (if your eating gluten). Also I was small until this year I wasn't able to gain any weight at all and I'm going on 6 years of gluten-free. IBS kinda comes with the disease for most, I have it and some other issues like a lot of others on the board. Does anyone else in your family have the disease? That's another thing I'd look at. The disease killed my grandmother because it went undiagnosed. My mother does not have the disease, but I do. If your still on gluten you will need a GI to do scopes and a biopsy. But if you have cut wheat out of your diet and are doing fine, I'd say its a wheat allergy then... You can have a wheat allergy and not be Celiac. I'm not sure about the weight thing, mine was so bad that it almost killed me so I was a severe case. You might wanna post a separate topic about the weight loss/gain issue and see what their experiences are.

The Nurse Practitioner that I am seeing is Carolyn Badenhop, CNP.

1250 Ralston Ave., Suite 204

Defiance, OH 43512

419-782-8332

Good luck and let me know if you need anything else. Ive found a lot of info for the area that may help.

diannalynn

[Crystalkd]

I love my internist Dr. Steven Patten in Tucker GA (Right out side of Atlanta.) I started going to him after I had all my testing and it came back inconclusive. After going through the whole thing he told me no matter what the test results said that it didn't mean I didn't have celiac or an allergy so NOT to ever eat gluten agian. I have Cerebral Palsy and when I come in with a complaint he always investigates. He never makes me feel like I'm crazy. He's the one that found the fibro and in looking at sleep tests my old neourologist had done relized I had a sleep problem that needed treatment so after a total of 14 years of complaints to various docs he's the one putting it all together! I'm so thankful to him!! My family and I believe he saved my life. I was in pretty bad shape by the time I got to him!!

Also Dr. Mark Stern might be worth a try. He's the GI that suggested celiac in the first place. Even though the tests came back inconclusive he was suppotive of the gluten-free diet if I was feeling better and not losing weight any more.

I need a little help though! Anyone know of a good celiac specialist in the Atlanta area that will be willing to talk to me even if I refuse to go back on a gluten diet to re run the tests. I've been to a couple who wanted me to go back on the diet so they could retest or told me "we don't think you'll have to stay gluten-free for ever."

[caek-is-a-lie]

I've had a lot of luck with the NCNM Community Clinics in Portland, OR. It's relatively inexpensive and they listen and really work with me:

National College of Natural Medicine

Open Original Shared Link

For appointments: (503) 552-1515

[frecOregon]

gastroenterologist Dr. Alan Kaynard 503 297 8081 near St. Vincent's in Beaverton, Oregon

I sure wish I'd known him when I was diagnosed 7 years ago! He is patient, listens well, and answers odd questions very respectfully. He did all the followup blood/nutritional type tests that my former gastroenterologist (who sent a letter telling me I had celiac) SHOULD have done.

[Skysammy]

I am new to this group and conversations. Not sure I am even typing in the right place .

I live in Gilbert,AZ and was diagnosed with Celiac Disease at age 50 - 8 years ago. And still struggling to maintain a gluten free diet and stay healthy. more on that topic at a later date. But I am looking for doctors in the area that are more aware of Celiac and base their treatments with that knowledge.

Is Dr. Shimamoto, San Tan Allergy and Asthma "Celiac aware"? I have developed more intense allergies in the last few years and struggle to get through our high pollen seasons - which I believe are now 365 days a year. Are you recommending this doctor because he/she is a great Allergist and of the knowledge level of Celiac?

Thank you for your response.

Sam

***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.