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Gluten Ataxia?


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21 replies to this topic

#16 notme!

 
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Posted 16 August 2013 - 12:49 PM

take heart, sharon!  give your body more time to heal - at 3 years gluten-free i am still having nerve damage healing.  you said it yourself (and i was the same way) you are feeling the best in 25 years.  i had 25 years worth of damage, i figure it's going to take some time to heal things.  the other day i balanced on one foot and picked up a paper towel with my toes and maneuvered it into the trash can.  without even thinking about it.  now, to a 'normal' person, whoop-dee-doo.  but for me, who (at one point) couldn't even drive - i used to fall down with no help at all, the world would just tilt and panicked, unbalanced me would hit the ground.  

 

sounds like you are doing great!  keep up the good work and maybe you will be surprised by more healing :)  


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#17 ravenwoodglass

 
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Posted 16 August 2013 - 01:30 PM

Hello,

 

I am new and this is my first post. I am definitely Gluten Sensitive.

 

May I give you a little back history: I have Rheumatoid Arthritis. Six years ago I started having terrible stroke-like symptoms, which paralyzed my left side.for 4 hours and sent me to the hospital for tests that all said I was fine. Except that I has a weird gait for months later, and slurred speech. My neurologist said I may need to seek a psychiatrist. Thanks, but no thanks. I knew it wasn't a psychological manifestation. Sure I was stressed, who wouldn't be, I was also in unexplained horrible neurological pain. He didn't know what to do with me. All my tests were normal. His OFFICE made an appointment with a 2nd neurologist for a 2nd opinion. When I arrived at that appointment (which was a considerable distance) the appointment desk refused to let me see the doctor, saying he NEVER takes "2nd Opinions AT ever, and turned me away. I was totally devastated, I was ill and had come so far on my own.

 

I have gone on and on like this for 6 years, living on crutches, in and out of a wheelchair, out of work, but on social security thank heavens.

 

Here's the irony of it all, being the best bread baker ever was always my goal. I loved bread more than money. I made bread twice a week. I had a bread blog. I taught how to make bread classes ONLINE, for heavens sakes. See how in trenched I was into gluten? It was my Entire LIFE! 

 

Then my nurse friend, whose son has Celiac says to me, "Sharon, my dear, You are definitely Gluten Intolerant! Your bread making is causing your immune system to attack your nervous system and this is causing your troubles." 

 

I responded back, "No, I've been tested for Celiac. Both a blood test and a gastro-intestinal test were negative." 

 

Like I said I continued for 6 years being disabled, no help from any neurologists.

 

Six years later, the same nurse friend reminded me,  "Sharon, my dear, You are definitely Gluten Intolerant! Your bread making is causing your immune system to attack your nervous system and this is causing your troubles." 

 

I became so disabled that I had to finally LISTEN to her, I stopped eating grains over a year ago. I've now have been FULLY Gluten-free for 9 months. You could not pay me enough to go back to my old lifestyle.

 

I went from a size 14 down to a size 4 (loosing 40 lbs in a year) I am only able to eat whole foods: meat, fresh fruit and vegetables. No packaged food - due to food allergies. I don't tolerate many of the gluten-free products due to food allergies. However, I am now STONGER, and FEEL BETTER than I have in perhaps 25 years now!!!

 

That's the good news! Plus I no longer have the muscle PAIN that they attributed to Fibromyalgia, which my Rheumatologist affectionately calls the "F" word. (sorry if that offends anyone else) but that's NOW GONE, having gone totally gluten free.

 

The bad news? The peripheral nerve damage REMAINS, as long as you don't touch me, I'm okay. When you do, then I'm not. Then there's the drop foot and weird gait that comes and goes. Slurred speech, the whole nine yards!

 

It's all classic: when I came upon Symptoms for Gluten Ataxia, I sat there and cried buckets!!! What the heck - 3 or 4 neurologists and none of them suspected "Gluten" was 

Welcome to the board. I would suggest that you ask for a referral to a physical therapist. They can help a lot with your gait problems and the foot drop.

You have only been gluten free for 9 months and it takes a long time for nerves to heal. You could still see a great deal of improvement so don't lose hope.

Those of us with neuro issues can be very sensitive to small amounts of CC. It is good you are going with whole foods and do read the Celiac 101 section to make sure you are doing all the stuff we need to do to keep safe.

Neuro's are for the most part not very knowledgeable about gluten ataxia. Mine even saw the brain lesions I had, thought I had MS but then when my spinal tap was clear offered me antidepressants and told me I 'wanted to be sick'.

Glad you are finally on the healing side and hope you continue to improve. Some find sublingual B12 to be helpful in healing.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#18 benbennett

 
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Posted 30 January 2014 - 07:23 PM

Hello Everyone,

 

I am new to this forum. I was just wondering about the onset of everyones problems. At the end of October my son (2 years old) got up from his nap and was drunk and I mean 21st birthday drunk. He stumbled down the hallway fell over could not walk at all. We have been in and out of the hospitals. We are just now starting the Celiac testing process. He is currently in physical therapy and we will soon be seeking a second opinion in Seattle. But back to my question. How did your symptoms start was it just all at once or was it a slow progression. My son's was sudden but he had been having problems for awhile. He had issues with my wife's breast milk and had many ear infections and fevers but the ataxia just happened one day.


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#19 MGR

 
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Posted 31 January 2014 - 10:10 AM

I am reading these stories and I just want to cry....! I have felt like a space cadette all my life, I am now old and have just been diagnosed- I also never went to the doctor for these issues as I thought they were part of my personality. I am an academic and sometimes I go to talks where I am I specialist in and just cannot make head nor tails of what they are talking about.. Working memory rubbish and cannot summarised what has been said. It is as if I am not involved although I am certainly there... Always this surreal feeling... Not processing information properly. It feels like people are far away... I forget words as I speak- I am not a native speaker of English, but I have days where I just can't string two sentences together.. Ears ringing... however, I have to say all this is improving since I am gluten free and I feel there is hope.... I can touch the world and it is thre!,
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#20 ravenwoodglass

 
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Posted 31 January 2014 - 03:52 PM

Hello Everyone,

 

I am new to this forum. I was just wondering about the onset of everyones problems. At the end of October my son (2 years old) got up from his nap and was drunk and I mean 21st birthday drunk. He stumbled down the hallway fell over could not walk at all. We have been in and out of the hospitals. We are just now starting the Celiac testing process. He is currently in physical therapy and we will soon be seeking a second opinion in Seattle. But back to my question. How did your symptoms start was it just all at once or was it a slow progression. My son's was sudden but he had been having problems for awhile. He had issues with my wife's breast milk and had many ear infections and fevers but the ataxia just happened one day.

Welcome to the board. My ataxia symptoms came on gradually and progressed over years.

I hope your little one does better soon. It is so hard when our little ones are ill and struggling.

You may want to start a new thread to ask about ataxia onset so more of us will see the topic and respond.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#21 windydad

 
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Posted 20 May 2014 - 05:40 AM

I had this myself and virtually all those symptoms have disappeared after I went gluten-free. It took me several months for those and the other neurological symptoms to improve/lessen.

They are pretty scary symptoms for sure.

There are several threads on here that discuss gluten ataxia. Lots of us have suffered these symptoms. Look under "related disorders" or use the SEARCH FORUM VIA GOOGLE at the top right corner under your profile and put in gluten ataxia.

Symptoms resolution times vary, but you need to be more careful so you can stop these glutenings. Honestly, 3 times in 3 months is not allowing your body to heal. You keep tweaking the autoimmune response and provoke the symptoms all over again.

Hopefully you can stop that from happening and start to see an improvement. smile.gif
Best wishes!

I too have never had a real answer to my neurological issues..even though I've had the symptoms for 10 yrs

?til about 5 weeks ago.I placed an order for some supplements..And spoke to one of their nutritionists..she said.ALL my symptoms sounded like gluten ataxia..it was an easy diet change for me..but my symptoms  too are getting worse..

I almost gave up..until I read the stories here..Thank you all for your help


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#22 windydad

 
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Posted 20 May 2014 - 05:45 AM

It does get better! You do not sound dramatic at all---your relief is genuine. smile.gif I did the SAME thing when I came on here last year and saw RAVENWOODGLASS and others posting this same information and reassuring me that my symptoms were gluten-related and I would be all right in time. No doctors could tell me that. I had brain MRIs, EMGs and saw 3 neuros. This was before I figured out I had celiac . 3 years in that misery wondering what the hell was going on.

It is "all in your head"--- but it is not imaginary. smile.gif

I had to stop dancing, riding a bike, walking on a treadmill (I slipped off one at the gym ) and doing yoga, even Tai Chi. Driving was out. My legs were so uncoordinated and weak. Everything BURNED from nerve pain.
I was ON FIRE from head to toe. Life came to a complete stand still.

Part of my problem was that I also lost massive muscle mass, so my muscles are weak and they lost tone. Working with a PT and a LMT
who specializes in rehabbing muscles and the pelvic area and working out trigger point knots has helped a lot. It's been a year and now, I can walk for 20 minutes without heart palps, shortness of breath and dizziness. I stretch and move with less awkwardness and pain. I could not lift a soup can. Now, I use 2 lb. weights to strengthen. But it is slow progress.

At one point, I needed help dressing and could not walk the length of my driveway without needing to lay flat on the floor after so I could breathe and so the room would stop spinning.

If you are experiencing heart palps --it could be vitamin deficiencies. (B-12 and Folate anemias are common in celiac and I had both and they made me feel like a tired old lady sad.gif )

I hope your doctor has run follow up testing for you?

You may wish to read some articles on what celiac has done to your body. It takes the "fright" out of it! wink.gif This Gluten File is a vast warehouse of Published medical articles. Search the site for all the articles, but here is the Gluten Ataxia Page.

http://sites.google....ee/glutenataxia

You are probably a lot younger than I am, so you may well rebound a LOT faster! smile.gif

Best wishes to you!

Thank you for this post VERY ENCOURAGING!!!!


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