Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Recommend A Doctor In You State


Guest celiacbuzzroom

Recommended Posts

Guest celiacbuzzroom

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 113
  • Created
  • Last Reply
Lisa Mentor

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

Guhlia Rising Star

Frederick Saunders MD

Lancaster, Pennsylvania

Nooner Newbie

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

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

Dr. Kristie Gering

Chippewa Falls, WI

She's fantastic.

KerriAnne Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Dr. John Kravitz in Mount Laurel, New Jersey.

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

KarenLee Rookie

Austin, Texas

Dr. Craig Lubin

Open Original Shared Link

celiac sucks Newbie

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

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

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

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

Dr Marni Nicholas

Portsmouth, NH

Primary Care

Dr. catherine Cheney

Beth Israel

Celiac specialist

Boston/Lexington, MA

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

jlinc Rookie

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

Dr. Thomas Brasitus

Dr. Nancy Merrill

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

  • 2 weeks later...
Susan M-G Rookie

Dr. Karen Nepveu, Rheumatologist

Colchester, Vermont

Mamato2boys Contributor

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

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

&

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

Fiddle-Faddle Community Regular

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

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

Guest AutumnE

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

***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

Jeffrey Retig

Bryn Mawr, PA (Philadelphia suburb)

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

fairydust Newbie

I see Dr. Peter Green in New York.

jmengert Enthusiast

Dr. Mark Ringold

Christiansburg, Virginia

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.