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When Someone Asks, "how Can I Get That [Celiac]?"


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35 replies to this topic

#1 Finally@45

 
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Posted 01 May 2012 - 09:06 AM

I'm still in my first year and I noticed that even though there is a growing awareness of Celiac disease, there may be some insensitivity to the condition. I am a thin person and by no means do I think there is some advantage to being thin. I'm uncomfortable when people who are heavier than me jokingly act as if I'm lucky to have a condition that has apparently damaged my gut so badly, I went years with food literally passing through me had very little weight gain. (I still can't believe it took this long to get a diagnosis, but that's another post.) I know some people don't understand the overall lifetime problems I've had (like problems having children, joint aches, stomach aches, etc...), but it still seems so insensitive.

What do you say to comments like that? Once someone said that I have good will power. I replied, "No, I have a constant reminder of the painful consequences of going off the diet. It's not like I feel satisfied from eating...[gluten]...almost immediately I feel sick to my stomach...." That seemed to be a good reply.
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Celiac & Mastocytosis

Follows a diet similar to the Paleo diet, minus high-histamine items such as

avocadoes, mangoes, papaya, berries, pork, farm-raised fish, spinach, and seeds.

No eggs or red meat either.

 


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#2 dani nero

 
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Posted 01 May 2012 - 09:42 AM

It's better than people taking one look at you and thinking they know what and how much you eat just because you're overweight, including doctors.

People think you're lucky because the media tells them the thinner the better (everything is about looks), and they find it hard to even comprehend the possibility that there could be any different worlds than the ones revolving around what the media feeds them.

Best thing to do is not take it so seriously :-)
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#3 Gemini

 
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Posted 01 May 2012 - 11:15 AM

I'm still in my first year and I noticed that even though there is a growing awareness of Celiac disease, there may be some insensitivity to the condition. I am a thin person and by no means do I think there is some advantage to being thin. I'm uncomfortable when people who are heavier than me jokingly act as if I'm lucky to have a condition that has apparently damaged my gut so badly, I went years with food literally passing through me had very little weight gain. (I still can't believe it took this long to get a diagnosis, but that's another post.) I know some people don't understand the overall lifetime problems I've had (like problems having children, joint aches, stomach aches, etc...), but it still seems so insensitive.

What do you say to comments like that? Once someone said that I have good will power. I replied, "No, I have a constant reminder of the painful consequences of going off the diet. It's not like I feel satisfied from eating...[gluten]...almost immediately I feel sick to my stomach...." That seemed to be a good reply.


As a skinny Celiac myself, I had to endure people's comments about eating disorders until I got my diagnosis. I hope they all felt bad about their stupid comments but I don't care about that anymore. The one thing you have to remember is that many people are clueless about food issues so you are never going to get the level of understanding that you would like to see, except from other Celiacs. Somewhere along the line, people lost all common sense about food. The overweight, especially, still make comments about how I manage to stay so thin.....rude comments. There is no big secret to maintaining weight. As long as you have ruled out an underlying condition like Celiac or thyroid disease, eating right and exercising are what it takes to keep your weight at the right place. This is what I tell people who make rude or ignorant comments. That usually shuts them up.
I guess I am lucky in some ways. I eat whatever I want, whenever I want and I can maintain my weight to within 2 pounds. However, I eat healthy and go to the gym twice a week so there ya go! But you're right....people are absolutely fixated on thin.
It's downright sad....
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#4 scaredblossom

 
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Posted 01 May 2012 - 12:15 PM

It's better than people taking one look at you and thinking they know what and how much you eat just because you're overweight, including doctors.

People think you're lucky because the media tells them the thinner the better (everything is about looks), and they find it hard to even comprehend the possibility that there could be any different worlds than the ones revolving around what the media feeds them.

Best thing to do is not take it so seriously :-)

I know this all too well, for years my weight has yoyo'd and still not sure why! My Dr has repeatedly told me my stomach "aches", indigestion, GERD, achy hips, knees, back and anything an everything thing else was b/c I was overweight....except when I wasn't overweight and then he actually paid attention for a minute with never a dx!! It's unreal all the way around of how cruel this world is...sorry a tiny pity party all over now :D
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#5 IrishHeart

 
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Posted 01 May 2012 - 01:08 PM

I was told by the Gastro's NP that I could not possibly have Celiac because I was fat and when I lost 90 lbs. rapidly and was seriously ill and lost major muscle mass, my PC doctor congratulated me on my weight loss. :blink:

I recently added back on 25 lbs. as my gut healed and have stabilized.

People are insensitive because they are unenlightened.

You could just say "You do not want a potentially life-threatening autoimmune disease just to lose weight, believe me."

I see people who are grossly overweight and have various health problems and they complain loudly about them. I have suggested they are probably gluten intolerant and they laugh it off. I want to say, "stop complaining about your weight, put down the bagel, pizza and fries and take a nice walk. See if some of your health issues resolve."

But I know they will just be offended and tell me to shut up. :lol:
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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


#6 Jestgar

 
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Posted 01 May 2012 - 01:11 PM

You could always (cheerfully) respond with something like "Cheer up! Maybe you'll get diagnosed with cancer!" Or some other ridiculous thing.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#7 IrishHeart

 
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Posted 01 May 2012 - 01:17 PM

:lol: That might work, but sometimes our witty retorts are lost on people, J!
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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


#8 pricklypear1971

 
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Posted 01 May 2012 - 01:24 PM

It's easy to replicate Celiac.

Tell them to go buy some draino, and eat a bit with every meal.

Then again, some people are dumb enough to do it.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 Skylark

 
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Posted 01 May 2012 - 01:29 PM

I take the will power thing as a compliment. The gluten-free diet is HARD and they are right. I do have good will power. :lol:

I'm pretty average as far as weight so I haven't had the diet comments. I'd probably say I'd be happy to gain 20 lb and be able to eat bread again.
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#10 cougie23

 
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Posted 01 May 2012 - 02:28 PM

It's better than people taking one look at you and thinking they know what and how much you eat just because you're overweight, including doctors.

People think you're lucky because the media tells them the thinner the better (everything is about looks), and they find it hard to even comprehend the possibility that there could be any different worlds than the ones revolving around what the media feeds them.

Best thing to do is not take it so seriously :-)

But Dani...your so cute in your picture...its hard to believe your overwieght! But I TOTALLY agree with you Guys...people Just don't get it! they're SO judgemental!
I've been overwieght for YEARS and no matter How often I explain to my PARENTS let alone anyone ELSE..(this was Before I was dX'd)... that i was over wieght because I DIDN'T EAT...had NO APPITITE,and everything upset my stomache(I threw up ALOT!)...so I never ATE much...I knew I was malnoutrishioned...BUT noone BELIEVED ME!My Husband Still says I don't EXERSIZE ENOUGH ...workout like a marine...then you'll lose your weight! YEAH...3 to 10 push ups against the wall and ALL MY JIONTS get imflamed...let alone ANYTHING ELSE!LOL!Takes 2 weeks to recover...rediculess!
Don't get me wrong...I exercise within my LIMIT...and I eat healthier than I ever have now that I know whats WRONG with me..especially with OUR diet! I just can't LOSE WIEGHT!(I have bruises were the cat steped on my leg...and where my legs rested against the coffee table)....I have scars and bloody sores and scratches from itching...THIS ISN"T FROM EATING JUNK FOOD! I don't EAT junk food! but no matter HOW many times you tell people that...THEY JUST DON"T GET IT!Ijust can't seem to lose wieght!I am working with my Doc and we are going to do more blood tests for deficencies though...I bruise WAY to easy...and my nails ,hair and teeth/gums are suffering...we'll see.But I agree...(Other doctors have said in the past
Your FAT...Lose wight...I say I don't eat...what do you want!...They say...eat !...yeah...big help!) :blink: :rolleyes:
At least I am one of those people who carry my fat well...curves in ALL the right places! HaHaHa!!! :rolleyes: :lol: :D I'm GREATFUL for THAT! LOL
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

#11 mommida

 
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Posted 01 May 2012 - 03:02 PM

Some one asked me about will power. I really don't have much will power, I just know it might as well be "D" on a plate.

I used to have a really cute booty. Nearly caused a car accident moving my sprinkler. :ph34r: My but is really gone. It is really not comfortable to sit for long periods of time with no cushion.
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Michigan

#12 Diane-in-FL

 
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Posted 01 May 2012 - 03:23 PM

And who would have thought that it would be hard to find clothes that fit after losing weight? Nobody wants to hear THAT! So I don't say much about it. I'd like to gain a few pounds back, but there's not much empathy for that problem either. :P
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Gluten Free since 2010

#13 IrishHeart

 
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Posted 01 May 2012 - 03:23 PM

Me neither, MOMMIDA. :( Sitting on a cushion right now, although some of it has come back. More oomph, but still not right.

My butt and boobs, once perky and full, just fell. No muscle mass. Flat pancakes back there. Not funny at all. My legs and arms were like sticks and I hurt just to wear clothes. My ribs and pelvis hurt so bad ---as if I had been run over by a truck.

Everything HURT--to sit, stand, walk or lie down.
For 3 years.
It was excruciating HELL.
I am still in rehab 16 months after DX.
Pics of me from this time reveal an old woman who looks like she
is having cancer treatments. People I know gasped when they saw me. The doc who treats me now, looked at them and said "Oh NO, that's not right!" (yet no doc thought this significant?)

Yeah, Celiac is a great way to become a walking skeleton.
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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


#14 ncallier

 
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Posted 01 May 2012 - 03:34 PM

It's better than people taking one look at you and thinking they know what and how much you eat just because you're overweight, including doctors.

People think you're lucky because the media tells them the thinner the better (everything is about looks), and they find it hard to even comprehend the possibility that there could be any different worlds than the ones revolving around what the media feeds them.

Best thing to do is not take it so seriously :-)


Although I have only recently been diagnosed with celiac disease, I have had symptoms since I was a little girl, and I am 50 years old now. Although there have been more serious and hard to deal with symptoms through the years, I have battled with my weight on and off for many years! I have been both skinny and overweight, often with no real explanation why my weight has fluctuated other than my crazy bathroom experiences. However, I did manage to maintain a normally healthy to low weight for most of my adult. Despite this, in the past five years or so, I have gained at least 30 pounds and have been unable to lose it no matter what. I have had a hysterectomy and two more bladder surgeries, so I really believe that changes in my hormonal health have led to a lot of my problems. Please let me know if you have experiences / ideas/ etc. that might help me understand myself!!

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English lady

#15 cougie23

 
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Posted 01 May 2012 - 04:32 PM

AHHHHH...Poor IRISH... :( ...Wish we could give you a big group HUG!!! THATS TERRIBLE...OUCH!!! :o ...PLEASE tell me things have gotten somewhat better!
This is why I allways say...keep telling us about your trials...It makes people grateful and less complainy about thier own problems when they see it can be SO much worse...not that I want you to go through this!But it DOES put things in perspective! :blink: :o :( :)
I feel sooooo bad for you...that must be so miserable! :( !!!...Your such a sweet person to be sooo miserable!Its not fair! :)
You too DANI...I don't know WHAT you eat...THERES nothing left to eat...after you get rid of all the PROBLEM food...ITS JUST TERRIBLE!!! NOT FAIR!
You guys are just too nice to have to be SOOOOO miserable!and still have such great additudes! :D Kudos to both of you!
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)




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