Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Balance And Falling


  • Please log in to reply
31 replies to this topic

#16 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,447 posts

Posted 22 April 2012 - 05:11 AM

I would have gone out and been a crazy person on my bicycle, falling only knows how many more times and possibly causing injuries. Now I know to walk and swim and WAIT :blink: and be patient and heal. Then take it one day at a time.


I know we talked about this on PMs, but hon---TIME is your ally.
Today and tomorrow are enough to focus on right now.

Take it slowly. Your body is "rebooting" itself. :) No one hates the thought of being patient more than I do. I lost so much time being sick and incapacitated and now, I just want go, go, go! and DO things, but my body is not entirely well, so I have to take it one day at a time. My vacation last month was a victory for me, but I spent 2 weeks recovering from it. :)

Ravenwoodglass, Gemini, and others who are 7 years or more gluten-free-- these are the people who will tell you it gets better each year and to just try and be patient. Your body will respond.

They are so right! ;)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


Celiac.com Sponsor:

#17 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 22 April 2012 - 02:57 PM

I know we talked about this on PMs, but hon---TIME is your ally.
Today and tomorrow are enough to focus on right now.

Take it slowly. Your body is "rebooting" itself. :) No one hates the thought of being patient more than I do. I lost so much time being sick and incapacitated and now, I just want go, go, go! and DO things, but my body is not entirely well, so I have to take it one day at a time. My vacation last month was a victory for me, but I spent 2 weeks recovering from it. :)


Ravenwoodglass, Gemini, and others who are 7 years or more gluten-free-- these are the people who will tell you it gets better each year and to just try and be patient. Your body will respond.

They are so right! ;)


Oh I couldn't agree with you more. I was so good to myself this weekend. Instead of pushing it I went on one motorcycle ride (I was on the back) and no more bike riding but will swim and spa tomorrow. I like that idea of our body "rebooting" itself. I took to day and decided not to go on the 2nd lengthy motorcycle ride and just went for a nice car ride, then a walk and had a nice afternoon and enjoyed some garden veggies and time with a friend. I'm feeling very very lucky today. Your support is really great and helping me tremendously. Thank you IrishHeart!

I look forward to hearing from everyone of course! Such amazing people here it's very humbling and very heartwarming! :)
  • 0

#18 JoeBlow

JoeBlow

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts

Posted 22 April 2012 - 07:13 PM

Oh I couldn't agree with you more. I was so good to myself this weekend. Instead of pushing it I went on one motorcycle ride (I was on the back) and no more bike riding but will swim and spa tomorrow. I like that idea of our body "rebooting" itself. I took to day and decided not to go on the 2nd lengthy motorcycle ride and just went for a nice car ride, then a walk and had a nice afternoon and enjoyed some garden veggies and time with a friend. I'm feeling very very lucky today. Your support is really great and helping me tremendously. Thank you IrishHeart!

I look forward to hearing from everyone of course! Such amazing people here it's very humbling and very heartwarming! :)


The falling down is probably gluten ataxia. It goes along with peripheral neuropathy. 24% of celiacs make antibodies to their neurons. This means your central and peripheral nervous systems. Purkinje cells in your cerebellum are needed for balance and coordination, and can get killed by your immune system. There is information on the web that these cells do not regenerate. However, my doctor says they can regenerate. I am in a small online support group called "Celiac Brains", started by a woman who got on Social Security Disability. She had the dragging leg problem, and needs a wheelchair sometimes. Celiacs whose immune systems attack their brains are especially sensitive to gluten. I myself get the neuro symptoms even when I breathe too much where I can smell gluten. The woman who is disabled goes along with her husband and kids to eat in restaurants, and gets CC, and then is disabled for long periods. Her doctors do not know if she will get better this time. Pleased be careful! I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at
http://imn.gcnpublis.../70051_main.pdf
  • 1
JoeBlow

Gluten-free,Dairy-free 08/06/07, Sugar-free since 1980
Diagnosed Celiac 09/29/07, HLA-DQB1s 0201, 0602

#19 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 22 April 2012 - 10:03 PM

I can't say anything new, but yes....I was a klutz that would walk into door frames. And the door frames weren't moving.

I noticed when I got glutened in Dec the clumsiness came back quickly. Especially in my fingers.

Vitams help me alot. I was low on d3, iron, b's. Still on supplaments.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#20 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 22 April 2012 - 10:30 PM

I can't say anything new, but yes....I was a klutz that would walk into door frames. And the door frames weren't moving.

I noticed when I got glutened in Dec the clumsiness came back quickly. Especially in my fingers.

Vitams help me alot. I was low on d3, iron, b's. Still on supplaments.

Thanks PricklyPear... wow me too with the door frames. :unsure: Thanks for sharing and for letting me know it came back fast when glutened. I sure don't plan on that happening but I'm sure none of us does either. Hope you are feeling better now. :)
  • 0

#21 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 22 April 2012 - 10:33 PM

The falling down is probably gluten ataxia. It goes along with peripheral neuropathy. 24% of celiacs make antibodies to their neurons. This means your central and peripheral nervous systems. Purkinje cells in your cerebellum are needed for balance and coordination, and can get killed by your immune system. There is information on the web that these cells do not regenerate. However, my doctor says they can regenerate. I am in a small online support group called "Celiac Brains", started by a woman who got on Social Security Disability. She had the dragging leg problem, and needs a wheelchair sometimes. Celiacs whose immune systems attack their brains are especially sensitive to gluten. I myself get the neuro symptoms even when I breathe too much where I can smell gluten. The woman who is disabled goes along with her husband and kids to eat in restaurants, and gets CC, and then is disabled for long periods. Her doctors do not know if she will get better this time. Pleased be careful! I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at
http://imn.gcnpublis.../70051_main.pdf

Thank you for sharing this article very much. I sure have a lot to think about and a lot to take in. :)
  • 0

#22 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 22 April 2012 - 10:57 PM

I haven't had time to read all of the replies posted but wanted to add my experience. I fell three times in one year - once b/c my shoes were too big (I think), and another b/c I missed the curb but the third was a doozy. I was taking a walk on NYE (certainly alcohol wasn't involved), I had good shoes on, it was daylight and not for a minute did i feel dizzy but the next thing I knew, I was kissing the concrete and broke my elbow. I fell HARD. I had an MRI to make sure there was nothing going on and of course, saw a neurologist. Nothing could be determined but exactly a year after my fall, an endoscope revealed that I am somehow getting gluten = my villa is blunted and/or flattened (can they be both?). It's been over a year since I fell but I am now afraid to walk alone - afraid to walk period. I exercise only in the gym on a treadmill that I can hang onto. However, I have had no signs of dizziness or any of the other symptoms described. Just my experience......

Very much appreciate you adding your experience USF1970. Have you found the source of your glutening?
  • 0

#23 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,447 posts

Posted 23 April 2012 - 05:25 AM

I really recommend that you never eat in restaurants unless they are totally gluten-free. Joking about nothing being in there on a brain scan is no joke. People with this problem have their brains shrink. If you want more information, I can provide links, or you can search for "gluten ataxia" or "Dr. Marios Hadjivassiliou". See the article at
http://imn.gcnpublis.../70051_main.pdf



No one is joking about other people's brains, or making light of ataxia, I assure you. We had it ourselves and recovered for the most part and we are trying to be encouraging, that's all.

Of course, NONE of what happened to us is funny. That's not what we meant at all.

I have provided the OP with all of these links to gluten ataxia on PM conversations, including this one. But it is very good of you to post it again!

There are many to be found here as well
http://sites.google....ee/glutenataxia

Most notably, "Early diagnosis and treatment with a gluten free diet can improve ataxia and prevent its progression"

The OP has been to a neurologist.

Finding a totally gluten free restaurant--an entire restaurant that has never had ANY gluten products in it?-- is impossible, except for one. As far as I know, it's Sherry Lynn's in Latham, NY.

Are there others? Please let us know!!! :) We are grateful for any information!

Best wishes, IH
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 JoeBlow

JoeBlow

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts

Posted 24 April 2012 - 04:30 PM

Finding a totally gluten free restaurant--an entire restaurant that has never had ANY gluten products in it?-- is impossible, except for one. As far as I know, it's Sherry Lynn's in Latham, NY.

Are there others? Please let us know!!! :) We are grateful for any information!

Best wishes, IH


IrishHeart,
Thanks for the links, organization is not my forte.

As for totally gluten free restaurants, the ones I have been to probably don't compare to Sherry Lynn's.
In the Chicago area, there are:
Rose's Wheatfree Bakery and Cafe http://www.rosesbake...m/contactus.asp
OMG It's Gluten Free Bakery and Cafe http://omgitsglutenfree.com/
In the future, there will be Senza: http://blog.senzachicago.com/, being established by the widow of the owner of Fatoush, which was sold.
Apparently the Great Taste Cafe closed, as have several other dedicated gluten-free restaurants around the country. Dedicated gluten-free Bakeries do better, such as Sweet Ali's www.sweetalis.com.
  • 1
JoeBlow

Gluten-free,Dairy-free 08/06/07, Sugar-free since 1980
Diagnosed Celiac 09/29/07, HLA-DQB1s 0201, 0602

#25 JoeBlow

JoeBlow

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts

Posted 24 April 2012 - 04:39 PM

OK, more dedicated gluten-free restaurants, which I have not been to,
in Colorado there is Coquettes Bistro and Bakery:
http://coquettesbistroandbakery.com/
in Massachusetts there is Idgy's:
http://idgysglutenfree.com/

Get out and support these places, or they will be gone, like the others.
  • 1
JoeBlow

Gluten-free,Dairy-free 08/06/07, Sugar-free since 1980
Diagnosed Celiac 09/29/07, HLA-DQB1s 0201, 0602

#26 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,447 posts

Posted 24 April 2012 - 06:10 PM

Looks like Sherry Lynn's may well have been the first, but others have sprung up. That's awesome!

Just to clarify: Sherry's is not just a bakery. They offer full meals, baked goods and products. Her equipment was all new, never used in a restaurant before. Pristine :lol: No one can bring any food or beverages in--not even the employees. :) No CC here!!

I started looking at the links you provided--thanks.

The one in Colorado (yum)and the one on Cape Cod (YUM again--and I could get to that one, at least!) sure appear to be totally gluten-free full menus restaurants!?

Thanks for posting, Joe.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 Lady Eowyn

Lady Eowyn

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 142 posts

Posted 25 April 2012 - 03:07 AM

Hello there
Don't know if i'm too late too reply to this thread or not - not really used to this posting lark or using a forum.
However, was interested to read this as I too have balance issues. Haven't fallen or anything but before gluten free or when cc'd or of course, fallen off the waggon slightly (still learning and occasionally struggling) I get a bit off balance. Very similar to being under alcohol influence! Tends to go hand in hand with being very spaced out so must be a brain issue. I also think bread bakeries affect this too.
As for restaurants - we sometimes go to one my son works for so they are kindly very careful for me but I still get glutened every time :unsure: think it's the flour, etc in the kitchen - that little!!
Apologies in advance if I'm doing anything wrong with the post.
  • 0

#28 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 02 May 2012 - 08:09 AM

Thank you to everyone who posted on this topic. It was a great resource and of great comfort to me. Much appreciated.

:)
  • 0

#29 Songbird1976

Songbird1976

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts

Posted 02 May 2012 - 08:12 AM

Hello there
Don't know if i'm too late too reply to this thread or not - not really used to this posting lark or using a forum.
However, was interested to read this as I too have balance issues. Haven't fallen or anything but before gluten free or when cc'd or of course, fallen off the waggon slightly (still learning and occasionally struggling) I get a bit off balance. Very similar to being under alcohol influence! Tends to go hand in hand with being very spaced out so must be a brain issue. I also think bread bakeries affect this too.
As for restaurants - we sometimes go to one my son works for so they are kindly very careful for me but I still get glutened every time :unsure: think it's the flour, etc in the kitchen - that little!!
Apologies in advance if I'm doing anything wrong with the post.


Hello Lady Eowyn,

Thank you for sharing (which is always great)! Hope you feel better soon.

:)
  • 0

#30 thleensd

thleensd

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts

Posted 02 May 2012 - 09:31 AM

What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and know that "more exercise to get in shape" isn't always the right answer! Some days I can only walk a few minutes at a time. Others more than an hour!

Last night I was teaching/directing my Tuesday night music group (adults)... There was a point in time (happens periodically!) when I just couldn't make my mouth say what my brain wanted it to! Fortunately, they've seen it before and we can generally just laugh about it. It's like oral ataxia...my tongue and lips just can't quite get their balance. :) (yes, I just made that up!) It's funny because most of them are at least twice my age, yet we have many of the same body-is-betraying-me type of experiences. In my case, however, I'm VERY hopeful that it is a temporary condition. What a painstakingly slow process recovery is for some of us!

And on that thought... Never ask the universe for patience. It just may give you the "opportunity" to develop it.

Cheers.
  • 1
Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.
Grain-free 1/11/11

Blogging Gluten-Free


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: