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How Do You Make Then Understand What It Is!


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62 replies to this topic

#31 ianm

 
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Posted 19 April 2005 - 08:32 AM

Here is a great one.

Oh you can eat it, it's made with organic whole grain flour so it soesn't have any of that gluten like the fake flour has. :blink: <_< :(

I then politely explained that gluten occurs naturally in all type of wheat. It is not an additive to flour. The only response I got was a blank stare. Oh well, what can you do.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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#32 KaitiUSA

 
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Posted 19 April 2005 - 08:36 AM

Oh you can eat it, it's made with organic whole grain flour so it soesn't have any of that gluten like the fake flour has. :blink: <_< :(

I then politely explained that gluten occurs naturally in all type of wheat. It is not an additive to flour. The only response I got was a blank stare. Oh well, what can you do.

haha that's crazy...just like someone saying to me o this is white bread it's not wheat bread....hello <_<
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#33 mommida

 
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Posted 19 April 2005 - 09:57 AM

I'm raising the next generation of Celiacs. A 5 year-old boy and 2 year-girl. I ask that when you don't feel like explaining Celiac one more time, to one more ignorant person, that you will. Don't be afraid to speak up for yourself or the younger Celiacs who are too little to explain for themselves.

I bring my own food to in-laws and social gatherings. I tell them I took me a while to learn the diet and I don't expect them to take the responsiblity for my or my children's health.

Laura
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#34 lotusgem

 
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Posted 19 April 2005 - 11:37 AM

Dear Laura,
I agree with what you are saying when it comes to educating the general public . We all should do our part to make this a more widely understood condition, not only for ourselves but for future generations. But, at the same time, I can sympathise with those that say that they are tired of having to explain themselves. I think that the key here is that they feel that they HAVE to defend their position. The attitude of some people that have no knowledge of Celiac disease, basically amounts to a challenge of our decision not to eat gluten. I guess in their eyes, our so-called "pickiness" makes us a nuisance because we won't (if we want to stay well) consume the same food that everyone else will. By and large, conformity is the nature of people, and because of this, the non-conformist often has a tougher time gaining acceptance. We have to try to be patient, but never give in to the goading of others to abandon our diet.
As far as being responsible for our own health, yes, that's our job. It is a shame when someone genuinely wants to be accomodating, but serves food that makes us ill. As you say, it took us a while to learn about the diet; should we be surprised that they didn't get it right? But at least they were supportive and made a good faith effort. What is more frustrating, is when someone either ignores or is hostile to our dietary requirements. In that case, we just need to be strong and do what's best for us.
Paula
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#35 watkinson

 
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Posted 19 April 2005 - 12:01 PM

Maybe it was because I was soooo sick and the change is evident, but I have not had one person respond to me like I'm crazy or just on some"fad" diet. :)

One of the things I almost immediatly explain is that...
"it is an autoimmune disease like lupus or MS. When I eat gluten, my body responds to it like it's poison. Antibodies are sent out to destroy it but can't tell the difference between the gluten and my bodies healthy cells so they start to "kill" my own body parts." "Like when you have MS your antibodies can't tell the difference between your own nervous system and a virus, bacteria, or cancer cell. so they basically eat the nervous system." People get it right away and I have no problem. The only question I get somtimes is, "can I have a little, will just a little bit hurt me?" I answer "Whether it's a gallon or a speck of gluten my body still sends out the same amount of antibodies.

No problem they get it. Then of course comes the issues of hidden gluten! That is a whole nother issue. Then I get people feeling sorry for me cuz they think I can't eat anything. The incredulous looks start coming... then my pat answer
"NOTHING tastes as good as not being sick!!!" :D Immediate understanding :D :D
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#36 pmrowley

 
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Posted 22 April 2005 - 02:36 PM

One of the things I almost immediatly explain is that...
"it is an autoimmune disease like lupus or MS.  When I eat gluten, my body responds to it like it's poison. Antibodies are sent out to destroy it but can't tell the difference between the gluten and my bodies healthy cells so they start to "kill" my own body parts." "Like when you have MS your antibodies can't tell the difference between your own nervous system and a virus, bacteria, or cancer cell. so they basically eat the nervous system."  People get it right away and I have no problem.  The only question I get somtimes is, "can I have a little, will just a little bit hurt me?"  I answer "Whether it's a gallon or a speck of gluten my body still sends out the same amount of antibodies.

Wendy, that is one of the best responses I've ever seen! I think we really do ourselves a disservice when we downplay our condition as an "allergy" or we're on Atkins. Granted, the recognition of those diets has made it easier to find gluten-free meals, but if we're ever going to really be taken seriously, particularly when it comes to food labeling laws in the US, we need to educate the masses, one person at a time.

Believe me, over the last 25 years, I OFTEN get tired of explaining myself. But, I try not to be on the defensive, because that immediately weakens my position. I'm NOT apologetic; I didn't CHOOSE to have this condition, any more than I chose to be a male. I was dealt a genetic hand, and I play it the best I can.

People who have been "cured" or hear of cures, are most often speaking of TROPICAL SPRUE, which is a curable infection. And then there's the "refractory" period that some people experience during adolescence. Most likely, the "cured" people just decided to abandon the diet, and are ignoring the damage they're doing to themselves.

Cheers,
-Patrick
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celiac disease diagnosed in 1980 by experimental biopsy procedure
gluten-free ever since!

#37 watkinson

 
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Posted 26 April 2005 - 08:50 AM

Hi Patrick, I havn't been back on line until today. Life got too busy over the weekend as usual! :D

I agree, I make no excuses about the disease. I don't sugar coat it either. I think that as soon as you call it a DISEASE and explain that it is just as seroius as MS that right away everyone gets it. Everyone knows what MS is, so when you associate celiacs with that, the point gets across. I think that when we call it a diet people think it's a choice like being a vegetarian or a vegan or something. That's when all the strange looks come around like your weird or anorexic or something. The only time I say it's an allergy is in a restaraunt. It's too much trouble to explain to a waiter who just doesn't have time to listen. An allergy they understand. If i'm really worried about cross contamination I will even say that I will go anaphalactic (sp) if I even get one speck. :D They get it right away :D :lol:

Your right, we didn't choose this, which is also why I explain to people that it is a GENETIC AUTOIMMUNE DISEASE. That I was born with it, passed down from my parents, like blue eyes or blond hair.

Cheers back, Wendy
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#38 stef_the_kicking_cuty

 
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Posted 26 April 2005 - 09:41 AM

Wendy, you're right. And why sugar coat it??? We would only hurt ourselves with sugar coating...

Stef
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#39 westiepaws

 
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Posted 02 May 2005 - 09:43 AM

Isn't it **fascinating** that people don't question you if you are on the **Atkin's** diet (which has been questioned in terms of how healthy it is). But if you say, I have a freaking DISEASE, they think you don't know what the hell you are talking about?

The people on Atkins have probably read **one** book about their diets -- that book. We, on the other hand, read food labels, medical studies, each other's advice, food lists -- and we are questioned.

It's darned insulting! <_<

As a newbie, I've come to the conclusion that the only person who will cook food for me that doesn't make me sick is my mom, who has my same food allergies plus some. Otherwise, I do what someone mentioned above -- I take my own. One item will be large enough for all to share, and then I take servings of other things for myself that will round things out and make a meal for me.

I went through one day of starving at a local festival b/cause I could not find food there or in my boyfriend's fridge. Never again! The fridge is stocked, as is my own house.

Hugs,

westiepaws
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#40 jenvan

 
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Posted 02 May 2005 - 10:38 AM

Great thoughts I would echo--we're all definitely passionate about this : ) I get tired of the assumption that I am simply "high-maintenance." Like I get a thrill about of being difficult ! I had a waiter say those exact words to me once ! However, it helps to remind myself that others' reactions are not a reflection on myself or any issue I have, but a reflection on themselves and the state of their heart, lack of patience/empathy etc. Luckily, as far as my friends go, they're pretty understanding. It would be much more frustrating if my friends and family wrote me off. I wish at least that much for all of you!
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#41 mytummyhurts

 
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Posted 02 May 2005 - 11:22 AM

Wow, I'm feeling really blessed right now for how my family, friends and co-workers have been so understanding about this.

My family tries hard to prepare stuff I can eat and then if it turns out I can't they try to find stuff around that I can. My aunt, a couple weeks after I went gluten-free, had us over for dinner and she specifically planned ahead for what I couldn't have and she made mine seperate and without the sauce.

I find that people I talk to about it are interested and caring. When I turn something down I just explain that I have celiac disease and tell them what I can't have and people usually want to know more.

I wonder if the "cure" people talk about is going gluten free! :D I mean, if they don't understand the disease and they talk to someone who used to have the terrible symptoms and now they are healthy, the person probably thinks they have been "cured" of celiac.
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#42 Generic

 
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Posted 02 May 2005 - 02:46 PM

I just explain celiac as if I was talking to a 10 year old. I will hold my hand up and say my fingers are like the lineing of your stomache. I then trace around my fingers and say a normal lineing absorbs like this. I then tell them, when i eat wheat etc, it eats my lineing, I then put my fingers down and show the tops of my knuckles. I then explain that my stomache is only able to absorb through what is left (which is basicly stubs) Then I go into graphic descriptions of how violently it makes me sick. This usually terifies them enough to be more than respectful of my dietary needs.

I know its kinda mean, but it works for the people that say stuff like your just picky etc.
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#43 ianm

 
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Posted 02 May 2005 - 03:43 PM

Westiepaws, I am a firm believer in the Atkins diet but have found that most people who say they are "doing Atkins" have never read the book and have no clue as to what is really involved. They think that all you have to do is eat a side of beef everyday and you'll be fine. WRONG! That is not what it is about at all. This same ignorance gets applied to celiac as well. In the past I had periods of time where the disease would go into remission. I could eat all the gluten I wanted and nothing would happen. The people who think they are cured are not they are only in remission. I just reached the point where i just don't care what others think. I wasted 36 years of my life because of this and if some idiot doesn't like it - TOO DAMN BAD! :angry:
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#44 julie5914

 
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Posted 17 May 2005 - 01:04 PM

Well I just got blood results back Friday (about 4 days ago) and then tried gluten-free and then called a specialist who said I needed to keep eating gluten for a month until I could see them. Anyway, during that brief weekend when I was avoiding it, my friends were great. Almost all of them had heard of it and knew someone and wanted to help figure what I could and couldn't eat. I am sure it can get annoying later on, but my mom is diabetic and if she can handle it, I can too. I was just impressed at how many people knew what it was and wanted to help instead of act like I was crazy.
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#45 celiac3270

 
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Posted 25 May 2005 - 04:54 PM

Isn't it **fascinating** that people don't question you if you are on the **Atkin's** diet (which has been questioned in terms of how healthy it is). But if you say, I have a freaking DISEASE, they think you don't know what the hell you are talking about?

The people on Atkins have probably read **one** book about their diets -- that book. We, on the other hand, read food labels, medical studies, each other's advice, food lists -- and we are questioned.

It's darned insulting! <_<

Phenomenal point, Westiepaws ;) <_<
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