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Wildfire123

Pre diagnosis Symptoms

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Does anyone have that free floating feeling or have that feeling of sitting in a rocking and rocking forward even though you are sitting in a normal chair when they are glutened? Also, do you have deep bone pain with tingling in the left arm and pain all on the left side of your body and weakness after being glutened?

Edited by Wildfire123

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I feel I am falling to the right even though I wouldn't be moving.  It is one of the first signs I have been glutened. I had severe ataxia before diagnosis and am thankful that I only get that feeling for a few seconds now and only when glutened. I was so off balance before diagnosis that I used canes and walls. Felt like I was walking on a boat in a high sea.  I had a lot of nerve damage that has mostly healed. I do have some residual damage that affects my right side but I had nervous system impact for almost 40 years prediagnosis.  As far as bone pain went that was severe and in many areas. The worst was my hands and hips. It resolved within months of going gluten free.  Now I just have to deal with the mild arthritic pain that comes with getting older.

Tingling can be related to B12 deficiencies so make sure that is checked or just get a good sublingual B12 tablet and see if it helps.

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Thank you for your answer. My family looks at me weird when this is going on because I literally pushing myself back into the chair over and over again. It's kinda embarrassing actually. I'm still waiting for my test results for Celiac's but I did an experiment today. I ate a Rice Krispies Treat, half a Pop tart and 5 Toll House Chocolate chip cookies. I wasn't feeling the "rocking" motion until after I ate those items. Also started to experience tremors, heart rate at sitting was 110 then shot up to 117 upon standing and a headache. Hmmmm....a coincidence?

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1 hour ago, Wildfire123 said:

Thank you for your answer. My family looks at me weird when this is going on because I literally pushing myself back into the chair over and over again. It's kinda embarrassing actually. I'm still waiting for my test results for Celiac's but I did an experiment today. I ate a Rice Krispies Treat, half a Pop tart and 5 Toll House Chocolate chip cookies. I wasn't feeling the "rocking" motion until after I ate those items. Also started to experience tremors, heart rate at sitting was 110 then shot up to 117 upon standing and a headache. Hmmmm....a coincidence?

While you are waiting for your blood results and still eating gluten, you don't need to eat lots and lots. Just 2 pieces of bread are enough per day. No need to go too crazy, lol! Of course, this may be some of your last days to eat all those toll house cookies and pop tarts! (Glutino makes a gluten-free pop tart that tastes like cardboard.)

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4 minutes ago, Victoria1234 said:

While you are waiting for your blood results and still eating gluten, you don't need to eat lots and lots. Just 2 pieces of bread are enough per day. No need to go too crazy, lol! Of course, this may be some of your last days to eat all those toll house cookies and pop tarts! (Glutino makes a gluten-free pop tart that tastes like cardboard.)

The day if the test I had Cookie Crisp cereal and 3 chocolate donuts. LOL

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Which decade which symptom. 

I was a pre  teen when I got vertigo, room spinning.

I get tingling in my toes, my feet go numb, and left upper arm goes numb. I can get both symptoms shooting pain in one side of left upper arm and numb on the other. As if my nerves are very confused and malfunctioning in the same arm.

In my 20's I had my "funhouse " experience where my vestibular system causes my right body to sense/feel to be walking several inches above my left. For those months I actually stopped driving because I didn't feel I should be driving.  At the time I told my husband I am so sorry if you want an annulment, I think I have MS,or an autoimmune illness coming for me. It went away before my MRI and I was so relieved but always feared it was coming but I didn't know when.

In my 30's  I felt maddeningly constant light headedness that was unrelenting. I could not get it to go away. It's like extreme brain fog on steroids. Some days my head did not feel attached to my neck. I went to a bunch of Dr then  I had rashes/skin issues, my thyroid felt to be off, my clockwork period disappeared MIA, etc I went to all kinds of Dr but started first with my primary, then OB, then immunologist, dermatologist, I was told eat more fiber/ wheat for your IBS. Then you get worse. I'm an idiot I listened got worse and paid the price in 4 more years of worsening symptoms.

Nope celiac/ ncgs/ gluten spectrum pick an adjective doesn't matter. 

 

so yes I get all those. I can get brain fog and nerve issues numb and firing oddly simultaneously  in the same appendage (left arm) , foot fall asleep and simultaneous cramping in same toe etc. very easily if cc. 

Reading posts by Raven helps keep me sane. My nerves misfire when cc and then they rage while trying to heal just to let me know I'm still alive. 

So alive !

The worst is honestly sometimes I  remember how academic I once was. I am trying to accept that I've lost that and I'm not quite sure I'll be able to ever regain my past ability and at the rate and recall retention. 

My short term memory is horrible since my challenge in 2016. I forgot to put my sons turkey burger in his lunch the other day. Shameful. He still had food -but not me ( my one sister use to call me Martha Stuart because of my unrealistic self mom expectations) My long term memory seems more reliable but still lags.

ps weakness- yes I could not  open cans/ jars/bags you name it for months! I'd cry trying to open a tuna can when no one was here to hear me .

I often have to keep editing my celiac .com posts autocorrect or brain lag - who's knows not I

so yes I know your issues and wish you the best my comrade

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Not exactly but, when you have the rocking motion, does it feel sort of out of body? l really related to Awol's post. 

 

When l was about 5-9 years old l had what l thought were experiences being lifted out of my body. l think l told my mom once but l was an odd kid and l also told her l thought l could fly with kites outside so eventually l probably stopped saying anything, LOL.

 

Now for the spinning/put of body, it always happened while watching TV, l cant remember what foods l would have been eating before but it was likely after dinner so very possible. It stopped pretty suddenly around 9 and l cant remember it happening since. l have had some extreme space outs but nothing like it.

 

The only thing l ever came up with while searching was epilepsy, which l do not appear to now have or had in any more obvious form. Maybe it was just vertigo!

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19 hours ago, BlackShoesBlackSocks said:

Not exactly but, when you have the rocking motion, does it feel sort of out of body? l really related to Awol's post. 

 

When l was about 5-9 years old l had what l thought were experiences being lifted out of my body. l think l told my mom once but l was an odd kid and l also told her l thought l could fly with kites outside so eventually l probably stopped saying anything, LOL.

 

Now for the spinning/put of body, it always happened while watching TV, l cant remember what foods l would have been eating before but it was likely after dinner so very possible. It stopped pretty suddenly around 9 and l cant remember it happening since. l have had some extreme space outs but nothing like it.

 

The only thing l ever came up with while searching was epilepsy, which l do not appear to now have or had in any more obvious form. Maybe it was just vertigo!

Glad I finally found a place people can relate to me.

Long time coming.

As for being "odd" as kids I think undiagnosed lifetime celiac et.al can do that to ya!

As for rocking and sickness when not being on a boat don't get me started about pregnancy number 3 undiagnosed celiac  ataxia land.... 

I spared you

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