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If you could correct one misconception about celiac, what would it be?

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I thought I'd throw this question out to the community. If you had a magic wand and could eradicate one commonly held misconception about either celiac, ncgs, or both, what would it be?

 

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-_- I have two I can not choose on. "A little will not hurt you" and The people that think there is some miracle cure for it they have and I just need to do blah blah blah and it is not a true AI issue.

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People who think this is a lifestyle choice. So many people (family included) have told me I'm full of it because nobody else in the family has it. Though many have complained about having "severe IBS" and have never been tested 

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There are two misconceptions I'd like to correct - can't decide which one I'd choose:

1. Celiac disease is temporary - once you heal, you can eat gluten again.

2. I'm a diagnosed celiac but don't have any symptoms - this means I'm fine / healthy - the tests were wrong (false positive) and I'll keep on eating gluten.      

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Similar to other posters:

I also have multi response:

AI including Celiac /NCGS is the "Easter bunny" others don't see it so it doesn't exisit. It's in our heads. These flawed thinkers then try to sabotage/ mock/ toy with you by incessantly offering you gluten, putting gluten on your desk, trying to trick you into eating it , giving you gifts of it etc. , to see what happens or watch you react, or if you educate them about it they all smirk and laugh cause you must be nuts because you didn't have a type 1 allergic reaction (sigh)

I've gotten picked on more as a gluten-free person than any other time in life.

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2 hours ago, Awol cast iron stomach said:

Similar to other posters:

I also have multi response:

AI including Celiac /NCGS is the "Easter bunny" others don't see it so it doesn't exisit. It's in our heads. These flawed thinkers then try to sabotage/ mock/ toy with you by incessantly offering you gluten, putting gluten on your desk, trying to trick you into eating it , giving you gifts of it etc. , to see what happens or watch you react, or if you educate them about it they all smirk and laugh cause you must be nuts because you didn't have a type 1 allergic reaction (sigh)

I've gotten picked on more as a gluten-free person than any other time in life.

This.

 

I like to tell people that if they put gluten in my food or near me, I'm going to do the same to them with rat poison.

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'but you look fine'  and  'i wish i was skinny like you'

ugh.  for just one day, i would like to wear my intestines on the outside of my body lolz nothing like 25 years of damage from misdiagnosis (hopefully, they're not that scary anymore) 

also, everybody who thinks 'o, no big deal.  you just hafta order off the gluten free menu' ummmmm.  nope.  i just hafta super-research the place and then make sure nobody's gonna cc me.  

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That I can eat anything labeled gluten free.

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That feeling better is as simple as just eating gluten free.  I wish...soy free, dairy free for a long time, oat free...along with a variety of other things just to feel decent.

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1. "It's a rare disease [I don't see why society should have to accommodate or understand it]."

People can't fathom that a disease that affects 1%  (or perhaps up to 3%, given a recent study) of the population is an extremely common disease. Like... it's one of the most common lifelong hereditary diseases in the world. Type I diabetes and adult peanut allergies affect 0.5% and 1% of the population respectively - most people agree that these are common disorders that deserve some kind of accommodation/general understanding thereof. But for some reason celiac is "rare" and we can't go around making special rules for all people's little problems!

2. "You seemed fine when you were eating gluten."

I am sorry I dared not to divulge my personal medical details to you at a time when I was scared and didn't know what was wrong with me. I can see that this was quite disingenuous, because 'no news' implies perfect wellbeing and harmony in all aspects of life. I should have made some dramatic, oversharing social media posts so that all my loose friends, acquaintances and distant relations might be aware of whatever embarrassing and/or mysterious symptoms I have as they happen.

 

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That if you don't  have one of the most common genes you can't be celiac even if blood tests and biopsy were positive.

That if you have positive blood work but negative biopsy, or vice versa, that the positive tests were false positives.

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"Isn't there a pill you can take?" 

No

"How can you still eat potatoes and rice?"

Because its gluten not starches I have to watch out for

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You can just eat a little of this (cake, muffin, pasta) right? I have a friend who is celiac who does it all the time and they are fine!

UGH

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21 hours ago, icelandgirl said:

That feeling better is as simple as just eating gluten free.  I wish...soy free, dairy free for a long time, oat free...along with a variety of other things just to feel decent.

Couldn't agree more.  If only it were so simple.

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That the symptom of celiac is that you sit on the toilet all day every day and there are no other symptoms of celiac disease. 

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On 10/12/2017 at 12:02 PM, Victoria1234 said:

You can just eat a little of this (cake, muffin, pasta) right? I have a friend who is celiac who does it all the time and they are fine!

UGH

I just heard this again yesterday!

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You Look Fine are you sure it's not in your head??..... Ugh 

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On 10/12/2017 at 12:02 PM, Victoria1234 said:

You can just eat a little of this (cake, muffin, pasta) right? I have a friend who is celiac who does it all the time and they are fine!

UGH

Do any of you guys hear people say this? Because when I do, I'm so thrown off I'm flabbergasted. Especially the part about the celiac friend. I need a stock answer!

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That it's the newest "fad" disease, and most people that think they have it don't really have it. And that a little bit of gluten won't really hurt you; after all, you ate it for years before you were diagnosed.

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All the above plus, "oh, so you can't eat bread".  And being oblivious to undiagnosed celiac disease causing myriad organ/nerve damage.  

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My one misconception? I think it would be that I am just following some fad.

I work in a resort and get lots of people stating they need gluten free meals, so me being the 'expert', gets to read labels and make suggestions. Then these same people will eat the breaded chicken!

I also have my suggestions put aside because the cooks read the label, which doesn't list gluten or wheat, and decide this is safe for the gluten-free guests. They put the gluten-free bread in the regular toaster, use margerine, use regular salad dressings (ya know, the cheap bulk stuff), and etc.

So now, so I don't look like a fad follower, I state that I am gluten free because I am Celiac, and I have the DNA results to prove it!  (23andme - wish I had that done 3 decades ago!)

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On 10/16/2017 at 4:10 PM, Victoria1234 said:

Do any of you guys hear people say this? Because when I do, I'm so thrown off I'm flabbergasted. Especially the part about the celiac friend. I need a stock answer!

i was at a meeting recently, where they serve dinner, ironically the meeting is at a communitiy room at our local hospital (where the meal is catered by the hospital cafeteria and i do not eat BECAUSE THEY CAN'T DO GLUTEN FREE.  AT A HOSPITAL.)  but i digress....

'oh, my doctor told me i have that, too.  i just can't stop eating bread ha ha ha' as she chomps a bite of dinner roll.   worse?  she's a doctor's wife  :rolleyes:  ya can't fix stupid  ;)

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54 minutes ago, notme! said:

i was at a meeting recently, where they serve dinner, ironically the meeting is at a communitiy room at our local hospital (where the meal is catered by the hospital cafeteria and i do not eat BECAUSE THEY CAN'T DO GLUTEN FREE.  AT A HOSPITAL.)  but i digress....

'oh, my doctor told me i have that, too.  i just can't stop eating bread ha ha ha' as she chomps a bite of dinner roll.   worse?  she's a doctor's wife  :rolleyes:  ya can't fix stupid  ;)

Omg.

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5 hours ago, notme! said:

i was at a meeting recently, where they serve dinner, ironically the meeting is at a communitiy room at our local hospital (where the meal is catered by the hospital cafeteria and i do not eat BECAUSE THEY CAN'T DO GLUTEN FREE.  AT A HOSPITAL.)  but i digress....

'oh, my doctor told me i have that, too.  i just can't stop eating bread ha ha ha' as she chomps a bite of dinner roll.   worse?  she's a doctor's wife  :rolleyes:  ya can't fix stupid  ;)

But you can sure mute it with Duck tape!:lol:

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