Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Myoclonus
0

5 posts in this topic

Hello,

I haven't been on for a while due to a debilitating illness that the Dr.s haven't been able to come up with a definitive diagnoses. I have been having seizure for the past two years. They have changed in the past few months in the way they present but in my reading the other day I came across this rare type of epilepsy where the muscles contract and then losen up. In the article the author says that people with Celiac Desease can be suseptable to this illness. This can happen many times in a row or once every few hours. I have had them last for hours. My seizures have been diagnosed by my Neurologist as nonepileptic or psychogenic. My Psychiatrist feels differently as do other Dr.s who have witnessed my seizures. My question is has there been anyone out there with celiac who has had these symptoms and has anyone been diagnosed with Myoclonus and how do you deal with it.

ken Ritter

Celiac Since 2004

0

Share this post


Link to post
Share on other sites


Ads by Google:

I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.

0

Share this post


Link to post
Share on other sites
I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.

0

Share this post


Link to post
Share on other sites

Thank You,

At least I'm not the only one. I tell you these have wiped me out. But is Myoconus an epileptic diagoses or is it a muscle related symtom?

Ken

I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.

0

Share this post


Link to post
Share on other sites

Please look into Lyme DIsease!

The dad of one of my students was only diagnosed with Lyme after he began to have seizures. And for some reason, Lyme seems to cause a kind of non-celiac gluten intolerance. There is a very active Lyme Disease thread here on this board, because so many here have been definitively diagnosed with Lyme.

Good luck!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,346
    • Total Posts
      917,409
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,480
    • Most Online
      1,763

    Newest Member
    Luposgirl
    Joined