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Severe Weakness/ Fatigue Episodes, Dizziness, Brain Fluttering Sensation, Etc...

weakness fatigue brain dizziness

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38 replies to this topic

#16 JoyMurphy

 
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Posted 03 November 2013 - 07:45 AM

Irish.. I'm not sure... I feel like most drs try to downplay the seriousness of the infection.. But peoe die from it all the time.. And my friend had two daughters who developed autoimmune diseases after the infection. Maybe they are afraid of law suits maybe they are told to downplay.. Who knows. Its too logical to me.
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#17 JoyMurphy

 
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Posted 03 November 2013 - 07:52 AM

Yes, i would be interested to hear what you have found with other sensitivities and low level exposures...
I think that there is no way there could be contamination in the products that i use daily.. But how do i know that for sure? Because a list or a company said so? A list once said i could drink omission...lol.. Not so much.
I need to look at this from all angles
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#18 IrishHeart

 
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Posted 03 November 2013 - 08:13 AM

. Maybe they are afraid of law suits maybe they are told to downplay.. 

 No doubt!

 

One more thought...how often are you eating out, Joy?

I am thinking that's the most likely culprit---even if you confine yourself to the foods on the Fasano diet.

CC is the bane of our existence. I do eat out successfully, but I am very, very careful about the places I choose.

Just a thought.


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"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


#19 GF Lover

 
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Posted 03 November 2013 - 08:56 AM

If your Doctor is suggesting Plaquenil then he must suspect an additional Autoimmune Disease which would go with your positive ANA. Of course if your getting cc'd then that would explain the continued AI response.

 

Plaquenil is an immune suppressant and it tough to tolerate.  I would push for an additional diagnosis.  AI Diseases like to have friends :)

 

Colleen


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#20 JoyMurphy

 
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Posted 03 November 2013 - 09:03 AM

I dont eat out very much anymore.. The restaurants that I tend to trust are far away. There is a burger place near us that has a dedicated fryer but im
Very careful there. I wont even get the gluten-free bread... Its not worth it. The least amount of movement from grill to plate the better.
I want to say maybe 2/3 x a month. Thats between maybe a lunch or dinner. I sued to eat out constantly. Now its not worth the risk for subpar food
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#21 GF Lover

 
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Posted 03 November 2013 - 09:06 AM

I eat out about once every two months.  That's just me.  I have horrible reactions so I just don't chance it anymore.

 

Colleen


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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

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#22 IrishHeart

 
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Posted 03 November 2013 - 09:07 AM

I dont eat out very much anymore.. The restaurants that I tend to trust are far away. There is a burger place near us that has a dedicated fryer but im
Very careful there. I wont even get the gluten-free bread... Its not worth it. The least amount of movement from grill to plate the better.
I want to say maybe 2/3 x a month. Thats between maybe a lunch or dinner. I sued to eat out constantly. Now its not worth the risk for subpar food

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!


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"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


#23 JoyMurphy

 
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Posted 03 November 2013 - 11:23 AM

I know.. I think you may be right...
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#24 IrishHeart

 
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Posted 03 November 2013 - 11:26 AM

I know.. I think you may be right...

Please, though...still see someone about the high ANA.. It's not always about the gluten. We all seem to have something else AI

that has come along for the ride. 

But if you stop the gluten exposure, all of that may resolve. :)


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"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


#25 notme!

 
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Posted 03 November 2013 - 11:49 AM

Hi Arlene,

These things definately were present and worse at the time of a gluten reaction.  But they continue when there is no gluten reaction.  My gluten reactions are pretty severe and last approx 5 weeks.  I haven't had one for a while.  That's not to say that there couldn't be traces that get through in a restaurant here and there, but I don't really go to them as much anymore at all.  

Since the super restrictive diet, lots of things have calmed, some things seem to be getting worse or standing out....These are the things.  So I wonder, could it be ongoing damage that hasnt healed yet? Or is it something else.  If it's something else.  I have exhausted the drs. in this city.

It is nice to hear that you feel these things too.  Do you feel the vibrating/ fluttering sensation in your brain?

yep - the only thing i can compare it to is when i was a "weekend warrior" in my young and bulletproof days when we would spend two days drinking any and all alcohol we could get our hands on then had a wicked hangover.   maybe it's dehydration related?  <the brain thing)  now, when i get glutened it feels like that (i hardly drink anymore oy vey and certainly not almost to death!)  i always drink a ton of water when i'm wading thru the gluten blues - seems to help.


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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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#26 notme!

 
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Posted 03 November 2013 - 11:54 AM

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!

i agree =- these 2 back to back instances which have taken up nearly a month of my time have been brought to me courtesy of eating out  :(   so not worth it :(


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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 :)

Celiac.com - Celiac Disease Board Moderator


#27 dilettantesteph

 
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Posted 03 November 2013 - 02:01 PM

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!

 

Before talking to me about specifics about super sensitivity, go here first.  I have to agree with IrishHeart and notme! that this is the most likely source of CC issues.  Sorry about that.  


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#28 IrishHeart

 
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Posted 03 November 2013 - 02:08 PM

Before talking to me about specifics about super sensitivity, go here first.  I have to agree with IrishHeart and notme! that this is the most likely source of CC issues.  Sorry about that.  

 

 

I think if Joy stops eating out, continues the clean diet and still finds she is reacting, she should contact you, Steph.

It may be a solution in the long run.

In any event, she has support here but she may need to make some changes first.

Best luck, Joy! we're here for you.


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"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


#29 JoyMurphy

 
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Posted 03 November 2013 - 03:46 PM

You know, it's funny.. That was my second biggest fear next to losing the other grains.. It wasn't as bad as i thought. I will give it a try.
Irish, i know what u mean about pursueing the ai.. I know there are dozens of ai's not just the main ones covered by the rheumy...but my pcp just throws up her hands and says she has no idea.... It makes sence to me.. And the fact that my ana raised back up again one of the weeks i was sick
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#30 IrishHeart

 
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Posted 03 November 2013 - 04:16 PM

PCP docs are not our best resources. Just sayin. I mean, look at me. I went back to my PCP guy dozens of times in 12 years. He farmed me out to everyone --all disciplines. (GIs, Neuros, cardiologists,rheumies, Endos, even a psychologist.... blah blah blah) Doctors in 3 states.

Celiac is not on their radar.

By the time I was dying, he had his aha! moment. ! because I TOLD HIM what it was.

 

Admitted he has children with celiac but "did not know how it manifests in adults"....

He's lucky I was so weak I could not strangle him. Had to stop the hubs from doing the same.

 

Seriously. stop eating out. For months. Then see how you feel.


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"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






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