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Celiacs Who Don't Eat gluten-free Make It Hard For Me :(


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9 replies to this topic

#1 Victoria6102

 
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Posted 26 May 2012 - 07:21 PM

I went to one of my friends graduation parties today. I only knew like 3 people there all of whom totally trust and understand the way I have to eat. They believe me and know how celiacs need to eat. But as we were eating there was a kid who didn't have a bun on his burger so we started wondering if he had celiac/NCGI. But of course I don't eat things other people cook so I had my own lunch. Then there wre some cake bites, and he went and got one. He asked why I wasn't eating one. I said "I have celiac disease" he replies "ditto." my mouth probably was hung open because I was so astounded that he was eating that CAKE. I said "you know that's CAKE right?" he said "yeah but I don't feel sick when I eat gluten so I just try not to eat a lot of it" my awesome brother goes "dude, you're killing your insides" . This kid didn't care because he doesn't have a reaction.

So all of this goes on in front of my friends. He eats the food cooked there, eats a cake bite, then eats a piece of graduation cake. All while I, a fellow celiac, look on in total horror as I imagine what's happening to his intestines. So it just frustrates me because people were looking at me, eating my gluten free salad and orange while he eats a piece of cake. People kept asking me "you're allergic to gluten right? So is that kid and he's eating cake" well its not that simple, ok??!! I know lots of teens don't care if they have celiac, they'll eat gluten anyway. This is the third out if three celiacs (besides me) that my friends have met, who eat gluten and don't care. No wonder they all doubt me. Like I said, some believe me but it must be hard for them to believe me when they've met 3 people who are nowhere near as strict as me. It makes it hard to spread understanding and awareness about celiac when so many people don't follow the diet.

Sorry just a little rant there...:)
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#2 Maggie Mermaid

 
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Posted 26 May 2012 - 11:10 PM

It's rather surreal when that situation arises. Hubby & I were at dinner with some people. One person was a healthcare professional; supposedly gluten-intolerant and has symptoms when she eats wheat. She even volunteered an opinion on a gluten-free baking mix. Anyhow, husband & I ordered gluten-free food and she ordered a sandwich with BREAD! And eats it. Very surreal. :blink:
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Enlarged thyroid with nodules and Hashimoto's diagnosed 2007. Self-diagnosed as gluten-intolerant.

Husband is gluten-intolerant, also self-diagnosed, suffered from severe eczema which has largely disappeared since avoiding wheat, corn, tomatoes, tree nuts.

#3 dani nero

 
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Posted 27 May 2012 - 12:51 AM

Tell your friends, he's an idiot. His luck will run out one day when he sooner or later gets really sick. Simple and easy. Lots of people don't get reactions UNTIL they go gluten-free (like me). Since he's never been gluten-free, he doesn't get reactions yet, but doesn't mean no damage is being done.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#4 WinterSong

 
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Posted 27 May 2012 - 05:28 PM

So annoying, and it really belittles the disease. This happened to me once. I was at a restaurant with friends, and I was just drinking water. A girl mentioned she had a gluten intolerance, then proceeded to take a big bite out of a chicken wing. This place was clearly not gluten-free friendly.

<_<
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Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#5 MikeOhio

 
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Posted 27 May 2012 - 06:43 PM

*looks sheepishly at room*

I did that for quite a while. I'm not responsible for the grocery shopping in the house and don't have a lot of money for food. I'm trying to do it right now but there are foods I thought would be okay that I have to eliminate and the person that does do the grocery shopping doesn't always get the brand I asked for.

A lot of Celiac's are not well informed and don't know that small amounts of Gluten will harm them. My doctor just told me I had it and didn't give me very much information nor even really point me in the right direction.
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#6 JNBunnie1

 
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Posted 28 May 2012 - 07:18 AM

*looks sheepishly at room*

I did that for quite a while. I'm not responsible for the grocery shopping in the house and don't have a lot of money for food. I'm trying to do it right now but there are foods I thought would be okay that I have to eliminate and the person that does do the grocery shopping doesn't always get the brand I asked for.

A lot of Celiac's are not well informed and don't know that small amounts of Gluten will harm them. My doctor just told me I had it and didn't give me very much information nor even really point me in the right direction.

Well, we are glad you're here! We have all the info you need. And I'm glad you're working on improving your diet.

It may seem like when we complain about Celiac people eating gluten that we're just being 'Moms' or being disapproving because someone is breaking the club rules. In reality, we just don't want anyone to be sick. We want everyone to be as healthy as they can. Feel free to ask away about any questions you have.
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If you're going through hell, keep going. ~Winston Churchill

#7 Victoria6102

 
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Posted 28 May 2012 - 07:49 AM

Oh yes, I'm not trying to bash anyone. I know it's hard for a lot of celiacs. It really takes a lot of research and basically time to figure out the lifestyle. But this kid knows it damages him, and he willingly ate the cake and gluten without even flinching. Like I said, I feel bad for him, knowing that hes being damaged very badly.
But for those who are trying, keep trying the best you can, you WILL get it right! Maybe you could go to the grocery store with whoevers in charge of it. Or make your own separate trip to the store to get your own food? Your health is important and you must do everything you can to heal up quickly:) best of wishes, and if you have any questions feel free to ask!:)
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#8 robertwilburn35

 
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Posted 28 May 2012 - 04:36 PM

I look back and see that I was sensitive to gluten for a long time before I had an "episode." Then I couldnt figure it out for a while and when I did I really didn't know what I should or shouldn't have. I am still learning but I pay for my mistakes now more than when I didn't even know. Silly how that works.
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#9 Melissa Palomo

 
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Posted 28 May 2012 - 07:31 PM

This is a big pet peeve of mine - people that claim disease/intolerance and then don't abide by the diet. But - while it annoys me I also kind of feel sorry for these people - because they're either in denial or don't understand the severity of the disease. And they're really only hurting themselves (well, and making it an uphill battle for us in some cases, but really the biggest person they're hurting is them self.)
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I'm Melissa. I am 28, diagnosed in August 2008. I'm a photographer and a blogger, too. :)


#10 butterfl8

 
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Posted 28 May 2012 - 08:09 PM

I so understand what you're saying. My mom, sister and I all have Celiac, but my sister doesn't get reactions like I do, and is not careful at all. So her in-laws can cook 'safely' for her level of sensitivity, but for me? I don't eat ANYTHING they have prepared.
Also, it's possible this other kid may not realize his current symptoms are gluten-related. My sister (who has a shared kitchen, two kids and a very busy life) was gripping about a persistant migraine. This as she's eating dinner consisting of hot oatmeal from Target. First of all, uh, nutrition? How is oatmeal a good dinner in anyone's book? But secondly, NOT GLUTEN FREE!!!! My input is no longer desired, as she doesn't react to as small levels as I do, therefore, I'm a freak. My advice is not needed. Sigh. It is something we'll have to deal with often, I have a feeling. But be happy in the knowledge you got this gluten-free lifestyle down! (And I love your brother's comment!)
-Daisy
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I haven't got the slightest idea how to change people, but still I keep a long list of prospective candidates just in case I should ever figure it out.
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