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Do You Take Your Celiac Disease Seriously?


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#1 GF Lover

 
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Posted 28 September 2013 - 04:53 AM

Being in the community for some time, I see many differing attitudes concerning Celiac Disease.  It is very satisfying to guide someone through the ins and outs of adopting a new gluten free lifestyle.  These people commit to change and reap the results of good health and go on to live life.  These are the success stories.

 

However, there are two sides to every story. 

 

I also see a lot of nonsense.  It's the nonsense that has me banging my head on my laptop.  Celiac Disease is one of the easiest Diseases to control.  You stop eating gluten.  No bells to ring, no whistles to blow.  Just stop eating gluten.  It is very clear what you can and cannot eat, right?  AND, the real kicker is that if you don't know if something has gluten, you DON'T have to eat it.  This is a choice.  A choice between being healthy or inviting disease.

 

All the best.

 

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

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#2 shadowicewolf

 
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Posted 28 September 2013 - 05:08 AM

Yes, I do.


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#3 kareng

 
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Posted 28 September 2013 - 05:37 AM

I take it seriously.  I choose to educate myself by attending medical conferences like the International Celiac Disease Symposium and reading info from reputable websites and studies and using a little common sense.

 

I met a lot of patients at the ICDS.  Very few had even heard of all the nonsense we see pop up on here about "cures" and "cross-reactivity" and "hidden gluten".  Most had never heard of all these do it yourself labs and were clueless why someone would even think of spending money on unproven tests.

 

It is understandable that people who are new to Celiac will have questions - some may seem stupid but that is OK.  However, it is frustrating to see the same person doing the same bad behavior repeatedly and then wondering why they feel bad. 

 

One thing I try to remember is that, the posts on this forum are not a good representation of the diagnosed Celiac population.  Most Celiacs are living in the world and doing fine.  We rarely hear from them.  They rarely read or participate in forums.


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#4 GF Lover

 
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Posted 28 September 2013 - 05:42 AM

Well Said Karen.


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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

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#5 love2travel

 
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Posted 28 September 2013 - 07:44 AM

Extremely. It is my LIFE, after all. My hubby and family need me. :-)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#6 notme!

 
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Posted 28 September 2013 - 09:07 AM

*i* do!  ms k, i see what you are saying - we hang around here to try to help people - most people who are new come onto this website, glean the info they need and move on.  so we have sort of a unique view of the celiac population.  but here's some things i have experienced:

 

i have one other celiac that i know in my town, and we belong to the same club.  we meet every few weeks and i bring my own dinner.  he eats the catered meal, with all the gravy and bread, etc!  i have known his wife for some time and she is a very intelligent woman, and no shrinking violet.  i talked with her  a little after the last meeting and asked 'what's up with your hubs?  i thought he was diagnosed - doesn't he know that eating all that stuff is going to cause him pain in the short and damage in the long run?"  she said, yes, he did all the education stuff on the disease in the beginning so he knows.  she tsk-tsk'd and said 'he will pay for it later and he knows that.  i have argued with him all that i am going to.  he is a grown man and makes his own decisions' 

 

my neice's friend is diagnosed and she is 24.  munching on pizza, eating doughnuts, etc.  i said:  WHAT ARE YOU DOING (she is a REGISTERED NURSE for crap's sake!!  she works in a hospital!)  she said:  i know, i know.  but i'm gonna live a little first.......  (SMH!)

 

so, i guess people who are *interested* in feeling well and living normally are vigilant/strict with their diets and we probably will see them on here every now and again if they hit a snag or have a question only this community would be able to answer. 

 

the people who are frustrating to us are ones who have been told to educate themselves but they just show up and report that they can't understand why they are still feeling like death when they haven't even tried to follow tried and true advice.

 

annnnd - i have a friend who thinks cutting out gluten will make her feel better - i said go for it.  but you have to do it all the way, or it won't work and you have to stick to it.  she calls me yesterday and says she ate at mcdonalds as a *reward*  for herself and now can't understand why she feels terrible.  i am not discussing gluten/gluten free with her any more.  she is on her own.  don't listen - feel $hi++y - now i don't care..................  she is still my friend, but i'm inclined to think she may actually like wallowing in self-pity........  :(


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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

 

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have a nice day :)

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#7 bartfull

 
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Posted 28 September 2013 - 09:52 AM

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.


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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!

 


#8 GF Lover

 
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Posted 28 September 2013 - 10:06 AM

Barty,  I'm glad you brought this up.  Long term scare tactics don't always work.  What is the saying?  Out of sight, out of mind...   When we see an immediate reaction to ingesting gluten, the scare is very real.  Smoking, Bad diet, Weight, Sedentary Life Style and numerous other choices, can contribute to health issues down the road or they may not.  We just don't know the cards we will be dealt.  As a smoker my self I often worry about lung cancer.  I did get cancer but just not that one.  Makes you think eh?  I'm also told to avoid sugar but I will still enjoy a brownie and ice cream at times.  I guess all we can do is to make the best choices (for ourselves) regarding our health.

 

Colleen


  • 0

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

 

gingerbread-man-smiley-emoticon.gif


#9 cyclinglady

 
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Posted 28 September 2013 - 10:08 AM

I agree with everyone!  

 

I've been fortunate (I guess) that my husband has been gluten-free for 12 years.  No, he wasn't officially diagnosed, but went gluten-free at the suggestion of my allergist (MD) and his GP (MD).   Through trial and error that first year, we both finally got the diet down.  Now after all these years and my official diagnosis, he refuses to do a challenge.  Does he have an intolerance or celiac disease?  We'll never know!  We do know that gluten is not for him.

 

So, the transition has been relatively easy for me regarding the diet.  What hasn't been easy is are the side effects from celiac disease (hyper & hypo thyroid, anemia, compression fracture of the vertebrae).  I haven't found a local group and my one and only celiac disease buddy has left the state.  Even though we call, it's not the same as hanging on the front porch drinking coffee and indulging in a gluten-free coffee cake.  That's why I hang on this forum.  

 

Each time I help someone, it reinforces my commitment to remain gluten free.  This forum gives me a chance to vent, ask a question (though someone usually asks first) or just chat.  It's nice to be circled by a group of people who are "walking in your shoes".  


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#10 IrishHeart

 
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Posted 28 September 2013 - 11:29 AM

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? ;)


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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


#11 squirmingitch

 
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Posted 28 September 2013 - 12:03 PM

ABSOLUTELY! MY HUSBAND & I BOTH TAKE IT EXTREMELY SERIOUSLY. And we both happen to be some of those that Barty talked about who have dh. I'm not saying celiac disease without dh is any less serious than having dh added into the mix but dh sure will make you wake up & smell the roses!!!!!

And I choose to help people who come here, especially to the dh forum, because when I needed it, there were those here who helped me & I wish to pay it forward but those are not the only reasons..... I also have a real desire to help those who have dh & are maybe not as bad off yet as I was/am. I hope to help them understand what lies in store for them for years if they do not take the diet seriously & to help them understand that going gluten-free is not a magic, instantaneous cure for dh & to help them understand why dh will/can hang around so long after one is gluten-free.

I can't tell you how many celiacs who have been gluten-free for years have come on the dh forum with the rash after having gotten accidentally glutened. I will say that it is very difficult to have any sympathy for those who come on saying they cheated with a smiley & crying the blues because they now have dh. 


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#12 IrishHeart

 
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Posted 28 September 2013 - 12:05 PM

 but it's not the same as hanging on the front porch drinking coffee and indulging in a gluten-free coffee cake.  That's why I hang on this forum.  

  

 

 

... if  someone would  bring us a tray with some coffee and cake, we'd probably never leave.... ^_^


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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


#13 Gemini

 
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Posted 28 September 2013 - 12:20 PM

I think if cigarettes made people as sick right away as gluten does for most people, it would be easy peasy to quit. But they don't and it's not. 

 

I think it's easy to take being gluten-free seriously because I personally find this easy to do.  But I also like to cook and like all those veggies and things many don't.  I like eating healthy and don't like spending an entire night with my head in the toilet.  I also have 4 AI diseases already so really, I don't need anymore, thank you!


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#14 IrishHeart

 
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Posted 28 September 2013 - 12:27 PM

.  I like eating healthy and don't like spending an entire night with my head in the toilet. 

 

 

me neither, unless I have earned it. 

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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


#15 cyclinglady

 
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Posted 28 September 2013 - 12:31 PM

... if  someone would  bring us a tray with some coffee and cake, we'd probably never leave.... ^_^

Yes, you would leave so that I'd have time to bake some other delicious gluten-free baked good!  And....if it's later in the day, a glass of wine or a nice cocktail!   If I could just get back cheese!!! 


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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