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4 replies to this topic

#1 jklivin

 
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Posted 06 December 2012 - 02:25 PM

I dont feel at this point of telling my celiac story as its the same nightmare yuo have all been through.

But, I was finally dianosed with this last month Octobor 20. my doc simply said, "change your diet".

So I have.. I buy all the gluten free goodies in the grocery stores in the gluten free sections.. but at times a recipe calls for something in the "normal" end of the store... So I read lables and no wheat stuff blah blah blah.. Long story short I slow cooked a roast on thanksginvin, and for the next several days I got sooooooo sick

And I am not sure if what I ate caused me to be this sick beucaese I thought I was follwing all the gluten free rules...

but then I started experiencing what we have deamed to be "celiac crisis"-- again, I wont get into my past with all this, but I had no idea this Celiac crisis was the cause of my very sick times.

fast forward to the lasf few days my body has been experiencing the same celiac crisis symptoms.

So - I look up GLUTEN WITHDRAWAL-- is this now the stage I am at with this disease ? Once I detoxy off gluten should I be fine? just like a heroin attict detoxing off of heroin?

I have noticed ssOSOOOOO many things that have gotten better, the tingling in my feet from GUllian Barre I barely feel it anymore... the pains in my chest seem to have subsided quite a bit.. the constant coughing up flem and weekly sinus infections are gone...

IS there something else I need to be doing to ensure i dont experience these gluten withdrawal?.. supplements.. anythig... that is painful and my mind was so fogged up i made some very bad stupid statemens as far as wanting to give up...

Thanks
Ed
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#2 bartfull

 
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Posted 06 December 2012 - 03:23 PM

If you have been gluten-free since Oct. 20th, I would think your withdrawal symptoms would be gone by now. It sounds to me like you have gotten cross-contamination somehow.

When you say celiac crisis, do you mean you had to be hospitalized? True celiac crisis is rare, and it is life-threatening. People in celiac crisis usually die from a cross between dehydration and an elecrolyte imbalance. I met someone who had it. She was hospitalized and had to have someone with her every minute because not only could she not stop the D, but she could not stop vomiting even for a few minutes. Someone had to hold her head so that, even though it was mostly dry heaves after a while, she wouldn't choke on her own bile. She was too weak to hold her own head up. Indeed, she was unconscious to semi-conscious most of the time. They couldn't pump the fluids into her fast enough to prevent dehydration. She came VERY close to dying.

I will admit though, that some of the days-long D that some folks here get must SEEM like a crisis. I am lucky. I get a little sick to my stomach, and a little bit of D. Mostly my symptoms are skin-related, brain fog, whimpering jaw pain, insomnia, and a few other goodies.

I suggest you read the "Newbie 101" thread to find out some of the hidden places gluten hides. Then continue reading as many threads here as you can. You'll learn a lot, and you'll get lots of support. Ask lots of questions. There are some REALLY smart people here who can help. :)
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 jklivin

 
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Posted 07 December 2012 - 02:49 AM

Thank you for your response - and yes I mean the celiac crisis where I felt I had pneumonia like symtoms, hot and cold sweats, brain fog, completely confused and out of it. I called an ambulance and they told me you look sick, can you get someone from your family to take you to the doc because this is not good use for an ambulance... I called my brother but he coulnd get off work and told me to tuff it out for a few hours and would come get me... I started hyperventaling so bad I could barely breath. By the time my brother showed up had fnished a half a bottle of brandy - seemed to be the only thing could stop the shakes etc...so he thinks I'm just drunk and takes me to the emergency room where the hook me up with a IV, give me a few Ativan and literature on alcoholism and send me on my way.
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#4 bartfull

 
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Posted 07 December 2012 - 09:26 AM

Please read this article and you will see that celiac crisis is different from what you describe. What you had was simply a gluten reaction. If you had been in true celiac crisis, which is very rare, they would crtainly never have turned you away from the ambulance, nor the hospital. You would have died.

http://www.ncbi.nlm....les/PMC2660817/
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#5 nvsmom

 
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Posted 09 December 2012 - 05:10 PM

I'm sorry you felt so badly! :( Sounds like a bad cc situation, a hyperthyroid situation, or a really bad virus or reaction to something.

I hope you feel better.
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ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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