Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Celiac Vs. Gluten Intolerance


  • Please log in to reply
18 replies to this topic

#1 BZBee

BZBee

    Community Member

  • Advanced Members
  • PipPipPip
  • 51 posts

Posted 05 April 2013 - 02:17 AM

One thing I've noticed since my celiac diagnosis is that there seems to be this division between confirmed celiacs and gluten intolerants. I'm new to celiac and I'm only wanting to get well and be well. I've had several conversations with people about the gluten free diet and several of those with gluten intolerance get defensive of their illness. You don't have to prove to me or anyone else that you don't feel well. If the gluten free diet is working for you then by all means continue. We are all in this together and we ned to support each other regardless if the medical community gives you a certain stamp, or not. It took the medical community 34 years to give me any kind of real answer to my issues. Honestly, I've little faith in modern medicine. I don't think we should let someone else confirm If we're ill or not. I don't know if others have experienced or sensed this as well but let's all come together on the war against gluten.
  • 0

Celiac.com Sponsor:

#2 mushroom

mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts

Posted 05 April 2013 - 03:22 AM

Thank you for your comments, BZBee.  There is sometimes an "Us vs. them" attitude between the doctor-diagnosed and the self-diagnosed, but really we are all in this gluten mess together, all fighting the same issues the best we can, some with labels on their foreheads and some without.  Those without (and I am one and have sometimes experienced this myself) do sometimes feel that  a diagnosis seems to endow some who have it with a greater sense of right to claim the gluten sensitivity than those who are either NCGI (i.e., tested negative) or who could not get anyone to test them before they stopped eating gluten out of desperation.  But we all have to do what is right for ourselves given our own situations and life sometimes cannot be neatly wrapped up in little packages with labels.  Respect is deserved for each suffering indvidual and as much help as we can give them.


  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 nvsmom

nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,150 posts

Posted 05 April 2013 - 07:17 AM

I agree too.

 

I think the only difference between celiacs and NCGI's is that celiacs have the intestinal damage... and I have no idea why that is such a defining factor when we share every other symptom and inflammatory response. My only guess is that emphasis on celiac disease comes from a focus on autoimmunity (celiacs tend to get more autoimmune diseases) but if you are just looking at how gluten affects our lives, it's about the same. There are a LOT of NCGI's who appear to have much worse and obvious symptoms than I do.

 

Gluten is just bad stuff.  :ph34r:  Too bad it that it tastes good. ;)


  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#4 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,436 posts

Posted 05 April 2013 - 10:56 AM

I am one of those celiacs who got the "label" the hard way (years of painful symptoms, complications, etc.)

and even if the docs had not finally confirmed it, I would still have gone gluten-free and never looked back.

 

I do not care much for labels anyway and if gluten makes someone sick, then I believe that person is INTOLERANT of it, period....

and we are all part of one giant spectrum of gluten sensitivity. 

 

Gluten is poison to us. Same boat. Same team---- and the same solution. Don' eat it! 

 

Welcome to the forum, BzBee. :)

Cheers!


  • 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


#5 Adalaide

Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,357 posts

Posted 05 April 2013 - 11:40 AM

The only reason I know I have an issue with gluten is by accident and how I got my "label" of celiac. I had an accidental biopsy with emergency surgery, otherwise I would still be horribly ill and not know why. I would probably also still be stuffing my face with more and more things like whole grains such as wheat in an attempt to be more more healthy only making myself more sick. Who cares what it is called? If it makes us all sick, it makes us all sick. So what if one of us called celiac because we got a diagnosis and another didn't or couldn't get a diagnosis. Frankly, I don't think it freakin matters. We're all in the same boat together. But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.


  • 0

"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


#6 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,436 posts

Posted 05 April 2013 - 11:54 AM

 But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.

 

There are a few "celiac elitists" out there  I saw one on another site who made me laugh out loud. (She was like the mean girl in HS who would not let certain people into her special group) It caused the NCGIs to defend themselves and it got ugly. Why should people have to defend their conscious choices to take charge of their own health?

<_< The things people get their panties in a bunch over gives me pause.


  • 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


#7 stanleymonkey

stanleymonkey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts

Posted 05 April 2013 - 03:41 PM

I joined a Facebook group for Celiacs in my area thinking they would be able to provide support, they know the area, the stores etc. the lady running it has been driving my crazy. Someone asked about tax returns as in Canada you can get some of the money back. I mentioned my experiences with the tax people and she kept going on about celiac this and celiac that. Which unfortunately is the way the tax people are, it's either you have celiac disease or no issue with gluten all. She seems to be unaware of the term gluten intolerant, it's all or nothing. When you mention ncgi she goes off about celiac disease.
I got mad and let rip, telling her that not everyone is (un)lucky enough to get a clear cut diagnosis, the testing is not always accurate and in our case when you have young kids seriously ill you can't wait and hope for a diagnosis you sometimes have to say screw it and go with your gut. She does not get that celiac disease and ncgi is not a black and white issue, and belittles the people that are self diagnosed.
  • 1

#8 BZBee

BZBee

    Community Member

  • Advanced Members
  • PipPipPip
  • 51 posts

Posted 05 April 2013 - 06:41 PM

I do think it's silly that these division lines exist. We've all been there when we know there is something wrong with our body and a stranger tells you how you really feel. No one knows your body like you do. I also feel that now I do have a label everything will be contributed to Celiac Disease. Instead of trying to investigate other causes for certain symptoms. Most of the information I've received for living a gluten free lifestyle has come from gluten intolerant's, and I appreciate the help, advice, and support.

Remember the old Dr. Joke.
Patient: "dr. My arm hurts when I move it this way."
Dr.: " Then don't move it that way."

If gluten hurts you, don't eat it!
  • 1

#9 gatita

gatita

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 382 posts

Posted 06 April 2013 - 05:49 AM

I so agree with you!  (And welcome, by the way.)

 

I just read an article this morning that ended with this: "Celiac disease can be diagnosed with a simple blood test. It's possible some people have a mild intolerance to gluten, but most doctors say if you don't have celiac disease, you don't need to avoid gluten."

 

Huh??

 

I am so glad my GI is more enlightened. He is absolutely convinced I have gluten intolerance, even after all my celiac tests were negative. He even warned me about cross contamination the other day, which made me feel great that he isn't doubting the diagnosis.


  • 0

Diagnosed with wheat hates me 4/13


#10 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,436 posts

Posted 06 April 2013 - 05:55 AM

That's an enlightened doc , for sure!

 

If Dr. Fasano ( who in my mind is the celiac guru) says gluten sensitivity is a broad spectrum, with celiac at the extreme end--then

why would anyone in the medical community think otherwise? They are the "unenlightened", that's why.

 

There will always be nay-sayers, but to me, anyone who feels remarkably better off gluten, with symptom-resolution--is likely gluten intolerant to some degree.

Why else would it be so apparent?

IMHO


  • 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


#11 GottaSki

GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,971 posts

Posted 06 April 2013 - 06:20 AM

Had any doctor thought to test me for celiac disease at any time in my first 43 years I would have likely tested negative - when finally diagnosed all of my antibodies were positive - yet weakly in most cases. All of my children and grands tested sero-neg with the exception of oldest that only had one positive DGP.

I don't care what we call it - gluten was destroying our bodies - so four of us now have "official" diagnosis and two remain labeled NGCI - will any of us touch gluten ever again - we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.
  • 1

-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 :)


#12 gatita

gatita

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 382 posts

Posted 06 April 2013 - 06:37 AM

we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

 

Perfect analogy (and pretty much what glutening feels like for me, too)!

 

And for the OP — one thing I love about this forum is no one judges the others based on who has an official diagnosis and who doesn't. I think many of those here WITH a diagnosis remember what a long hard road it was to get one!


  • 1

Diagnosed with wheat hates me 4/13


#13 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,436 posts

Posted 06 April 2013 - 12:24 PM

 I think many of those here WITH a diagnosis remember what a long hard road it was to get one!

 

That's the truth, Gatita!!. 


  • 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


#14 GottaSki

GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,971 posts

Posted 06 April 2013 - 12:52 PM

That's the truth, Gatita!!. 

 

Ditto :)

 

PS...Welcome BZBee!!!


  • 0

-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 :)


#15 julissa

julissa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 141 posts

Posted 07 April 2013 - 06:06 AM

this is a great thread. I agree it does not matter to us if we have a confirmed diagnosis. we know our bodies and that's what counts.


  • 1


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: