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Help Needed Please Re: Glutening


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#16 IrishHeart

 
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Posted 11 January 2013 - 04:12 PM

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree.

since all the tests they chose to run were normal it must have all been in my head --- right? :(

wrong --- it was all in my gut -- at least we know better now :)


......nodding my head in total agreement.....
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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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#17 Adalaide

 
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Posted 11 January 2013 - 08:21 PM

...depends....whatdja have for lunch??


spam :ph34r: look... some days are just those kinds of days.

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree. since all the tests they chose to run were normal it must have all been in my head --- right? :( wrong --- it was all in my gut -- at least we know better now :)


Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#18 GottaSki

 
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Posted 12 January 2013 - 05:35 AM

Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D


Got that right! We are crazy fun - not crazy - I refused antidepressants the first 10 or so times they were offered - finally gave in when my youngest was 3 - took them for a few weeks and was so angry I almost hit one of my kids - I have never ever wanted to strike a child - went off them cold turkey against doctors orders. Brain had zappy electrical feelings for about a month but soon I was back to my "normal" self - too many AI symptoms to count, but stayed away from docs for about 4 years except for annual paps.

For anyone reading along - if docs tell you it's all in your head or maybe you are hormonal, stressed, overworked and it does not ring true to you - run away. My sister has battled major depressive order her entire life - she has ALWAYS known she was depressed. Meds are a life saver when they are needed - but they are not needed for celiac disease.

Ok hopping off soapbox ;)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 Adalaide

 
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Posted 12 January 2013 - 01:25 PM

I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#20 notkuroda

 
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Posted 14 January 2013 - 04:59 AM

I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.


the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:
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#21 cavernio

 
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Posted 14 January 2013 - 07:07 AM

the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:


Try telling that to someone who's been bummed most of their life and who doesn't want to try and fix 'who they are' because 'there's nothing wrong with them'. That's my sister and my dad.

Unfortunately for me I didn't have any idea what celiac disease was or that I could have it until got abdominal issues that only occured after I tried going on birth control pills.

Right now my main concern is my neuropathy because I need my hands and feet to do pretty much anything, but a close second is my mental state...little motivation, almost always tired I just want to sit down and not have to do anything, have a hard time keeping a constant focus (I space out all the time during conversations, miss things in movies and shows, going on 2 years of not working) even though I can read/communicate on my own time alright, mood swings, (I thought they'd gone away, ya right). The fact that my bowels are a little loose and I have too many stinky farts is the least of my concerns.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#22 GFreeMO

 
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Posted 14 January 2013 - 08:57 AM

Do any of you get flu type symptoms when going through a glutening? Not the sore throat stuff but a low grade fever and terrbile muscle pain, weakness and just feel like when after you have had the flu?
I am totally wiped out.
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#23 kareng

 
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Posted 14 January 2013 - 09:00 AM

Maybe you have a light case of the flu? Several versions are going around.
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#24 GFreeMO

 
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Posted 14 January 2013 - 09:12 AM

I don't think so...I get this way when the DH gets going. I also have a zillion bleeding sores on my lips. Maybe it's a DH thing.
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#25 IrishHeart

 
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Posted 14 January 2013 - 09:14 AM

I feel pretty lousy if I get hit, Mo. If your DH is blossoming, maybe you did get CCed.

Drink water, rest up and it will pass soon. Sorry, hon.((hug))
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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


#26 GFreeMO

 
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Posted 14 January 2013 - 09:40 AM

I feel pretty lousy if I get hit, Mo. If your DH is blossoming, maybe you did get CCed.

Drink water, rest up and it will pass soon. Sorry, hon.((hug))

Thanks IH. Thats exactly what I am going to do. Water, rest and Lifetime movies today.
I keep making careless mistakes and am paying the price now. :wacko:
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