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Do You Take Your Celiac Disease Seriously?


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#31 IrishHeart

 
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Posted 29 September 2013 - 09:55 AM

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!

 

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens?  People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently  told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake,  eggs, the post office desk where she used the pen.... (and I am not making any of those up)

 

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.


  • 1

"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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#32 bartfull

 
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Posted 29 September 2013 - 10:16 AM

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens?  People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently  told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake,  eggs, the post office desk where she used the pen.... (and I am not making any of those up)

 

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS! :lol:


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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!

 


#33 notme!

 
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Posted 29 September 2013 - 10:32 AM

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS! :lol:

AMEN!  :lol:

 

i mentioned to my sister-in-law that i haven't been sick (cold, flu virus, bronchitis, pneumonia, etc) at all, not even a sniffle, for almost a whole year!   when they were dropping like flies into the sick bed, i didn't even get nausea.  nothing!  she says "that's because you wash your hands all the time"  - i was like, duhhh................  don't you??  ugh, everytime i pick the kids up froms school(s) the first thing they have to do when they walk in the door is go wash their hands - wash the school off - yuck!  i am a soap and water advocate  :)


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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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#34 IrishHeart

 
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Posted 29 September 2013 - 10:44 AM

um, guys....no,  this woman told me it happened while she was sitting on the bus. She was not eating anything.

 

So...the gluten, what? absorbed somehow off  a stain on the seat..?..through her clothes, then through her butt  tissues, and somehow magically landed in her intestines?

 

I was not buying it. <_<


  • 0

"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


#35 notme!

 
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Posted 29 September 2013 - 10:55 AM

um, guys....no,  this woman told me it happened while she was sitting on the bus. She was not eating anything.

 

So...the gluten, what? absorbed somehow off  a stain on the seat..?..through her clothes, then through her butt  tissues, and somehow magically landed in her intestines?

 

I was not buying it. <_<

THE GLUTEN FAIRY!!!  :o   oh, she is sneaky.............. :ph34r:


  • 0

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


#36 bartfull

 
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Posted 29 September 2013 - 11:05 AM

THE GLUTEN FAIRY!!!  :o   oh, she is sneaky.............. :ph34r:

It depends on what time of year it was. If it was around Christmastime it might have been Evil Santa. Remember him from the old Calvin and Hobbes strip? (He was the one who always brought socks and underwear.) Maybe he put gluten in the woman's stocking!!! :lol:


  • 0

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!

 


#37 IrishHeart

 
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Posted 29 September 2013 - 11:15 AM

 fairy dust and  Santa  --  BOTH GLUTEN FREE!!


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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


#38 answerseeker

 
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Posted 29 September 2013 - 12:37 PM

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.
as Karen mentioned...and you know what happens? People argue loudly with us anyway. I cannot tell you how many times someone
has vehemently told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,
carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake, eggs, the post office desk where she used the pen.... (and I am not making any of those up)

After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.
.


Lol you'd have to literally live in a bubble if that were all true. Walking in the bread isle? Really?
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#39 answerseeker

 
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Posted 29 September 2013 - 12:39 PM

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS! :lol:


Right. We do it to prevent colds and flu. I wouldn't touch a dirty bus seat then touch my mouth even if I didn't have celiac! Gross
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#40 answerseeker

 
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Posted 29 September 2013 - 12:47 PM

Nope. not at all.

Seriously? I would never read any relevant current research, change my entire household, diet and nutritional plan, read books by reputable celiac specialists, work on two websites dispensing free advice like skittles, counsel people in my community who need help learning the G F diet, compile a thread for the newly diagnosed, annoy the crap out of people to go get tested, do everything in my power to get well, work with a physical therapist for 2.5 years to regain muscle strength  or become a vocal advocate for celiac.

 

Why would I do all that? Just to live a long, healthy life and make sure others can too? bah! that's crazy talk..!!.and good health is over-rated. 

 

:lol:

ok, I'll be serious for a second...

Karen pretty much said what I would have said (so I will just say DITTO--what she said!!!) and add:

to anyone reading this thread, people who do stick around here after learning the ropes do so because they want to "pay it forward".

We were all newbies once too and people reached out to us.

 

We really do care about our fellow celiacs and if we sometimes seem a little "mother-hennish" or "tough love-ish" it's because we do not want any of you to suffer as some of us did. 

 

Make sense? ;)

and I have been on the other end of Irish's mother hennish

and I'm healing very well because of it :wub:


  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#41 IrishHeart

 
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Posted 29 September 2013 - 01:04 PM

and I have been on the other end of Irish's mother hennish

and I'm healing very well because of it :wub:

no, that's all you, kid. You did the homework and wanted to get well. Just stay the course!  

And wash your hands....and wear clean undies.   ;) love, mom


  • 0

"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


#42 psawyer

 
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Posted 29 September 2013 - 04:52 PM

Lol you'd have to literally live in a bubble if that were all true. Walking in the bread isle? Really?

Irish is not making that up. And we have seen it multiple times from different members.

I try to be a voice of reason here, with facts and evidence, but reason will lose to emotion more often than not. A zealot will not listen, no matter what you say. :o


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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#43 ItchyAbby

 
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Posted 29 September 2013 - 07:10 PM

Although I don't want to do damage to my gut for fear of cancer and lupus and all of the other horrible things that can happen to a celiac who eats gluten, I'll tell you a "secret". As a smoker, I have to admit that all of those long term scares don't always work. I KNOW smoking can cause horrible things too, but I haven't quit yet.

 

But if smoking could cause DH...

 

Yes, DH is my greatest fear. I have read enough and seen the pictures of those who suffer from it, and I know I too could be one bite of gluten away from having it myself. There is NO WAY I would EVER risk that! So when the long term scare tactics don't work on someone who is playing Russian roulet with their health, I think they should all be required to go to the DH section here and read every post, look at every picture. I'd be willing to bet quite a few of them would wise up and stay STRICTLY gluten-free.

This is so interesting - both the original post and bartfull's response -  and ties into something I've been thinking to ask the community: Why the hell to people "cheat"?! I don't get it, but I don't want to sound all "judgy". I started wondering, "Well, maybe this is just something that happens when you start feeling better?" Like, does everyone cheat once in a while, as though the pull of gluten is just too great to resist? So, I was going to ask this somehow: Does everyone cheat eventually, after they have been feeling good for a while?

 

Because, honestly, I cannot imagine EVER eating gluten again. DH put the fear of God in me (and I'm agnostic! :lol: ). I have never EVER felt anything even remotely like that in my life. Armpits to hipbones, hellacious itch and pain and heat and blisters and giant continents of hives. Poor sleep for months, week long panic attacks, shirts welded to my skin, and the crying, crying, crying. I WILL DO WHATEVER IT TAKES TO NEVER FEEL THAT WAY AGAIN. Anything - tell me I can only eat worms, and I'll do it so long as the DH stays away. It made me want to die. Death seemed like the only option for relief.

 

What I'm trying to say is: Gluten can eat a big bag of -----, for all I care. I have no desire for it. DH made sure of that.

 

But I do not want to sound like I am judging or ridiculing - I am new at this, just 4 months post-DX. Maybe this is common knowledge, that one's resolve to stay gluten-free breaks down after a while. I wanted to know so I could watch out for it, if that was the case. So, I am glad to see that it is not true across the board. I really cannot imagine that I will ever make eyes at a croissant or bagel in the future, knowing what it would put me through.

 

So, this is my long-winded way of saying that I take it very seriously. It's my life now - taking care of this body is #1. Feeling better is all the reward I need.


  • 1

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#44 w8in4dave

 
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Posted 29 September 2013 - 07:24 PM

I also take being Celiac and being Gluten free very serious , I am new at it and have made some very bad choices and mistakes! But I vow not to do it again!! And if I make another mistake! I will keep learning and shoving knowledge in my head. I am not perfect by any means. I am really trying to learn from those of you who have had this a very long time!!! If I sound stupid or sound like I don't want to listen to you just slap me!! (Ouch) Not really but yes, I take what you guys say to me very serious ... This disease is not going to get me!! I won't eat at Taco Bell again!! I promise!! 


  • 0

Recovering Gluten Eater 

DX'd June 17th 2013


#45 GF Lover

 
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Posted 30 September 2013 - 03:50 AM

This is so interesting - both the original post and bartfull's response -  and ties into something I've been thinking to ask the community: Why the hell to people "cheat"?! I don't get it, but I don't want to sound all "judgy". I started wondering, "Well, maybe this is just something that happens when you start feeling better?" Like, does everyone cheat once in a while, as though the pull of gluten is just too great to resist? So, I was going to ask this somehow: Does everyone cheat eventually, after they have been feeling good for a while?

 

Abby,

 

As you found out in this Topic, cheating is never an option when you have Celiac Disease.  When a diagnosed Celiac gets gluten somehow the body starts an all out autoimmune attack and we know how that feels, horrible.  I have the belief that if someone has diagnosed themselves as a Celiac and does not have a full force attack when they get gluten then the urge to cheat may be greater.  They have the "unknown" factor of not really knowing if they are damaging themselves or not.  I also believe that if someone with NCGI eats gluten, it is with the understanding that they may get all the usual symptoms but know there is no damage being done.  Even some people with a diagnosis in hand may cheat because they just don't care.  These factors may influence future decisions whether to eat gluten or not.   I also believe that the longer you eat gluten free the easier it is to resist any and all temptations.  When our minds forget what something tasted like or how it made us feel happy, than those cravings and urges fizzle away. 

 

Modifying your diet is the easy part of treating Celiac Disease.  Modifying your behavior is the hard part.

 

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.

 

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