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Gluten Free...just Because


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#16 hnybny91

 
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Posted 24 April 2011 - 04:30 AM

I had someone tell me a few weeks ago that they have Celiac Disease too. They also claimed that they can not eat casein (just like me.) Just earlier that evening this person had been eating cheese stick and she regularly eats things like cookies and even regular pizza. Um, you do NOT have celiac disease unless you are one of those that has no symptoms and just choose to ignore it. She is always talking about the health benefits of this and the health benefits of that so you would think if she really couldn't eat gluten she wouldn't, you know?
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#17 sodakgal

 
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Posted 24 April 2011 - 04:33 AM

I went out to eat with a bunch of friends last week and ordered a salad with tuna (no spices). One friend said to me "wow, with this diet you are on, you are really going to lose a lot of weight". I told her that I hoped not, since the past year before I was diagnosed, I had already lost enough weight I was beginning to look like a cancer patient. At that moment all my friends seemed quite interested in what exactly Celiac was, and it ended up being a teaching moment. I think they understood.

Kendrea
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#18 Fire Fairy

 
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Posted 24 April 2011 - 04:56 AM

I hear you! It's one of the most annoying things because it devalues our diagnosis. It makes it seem like we are over reacting crazy people who are out of control, but in reality we are no different than someone with a peanut allergy expect wheat is in more things than peanuts are. Granted our throats won't close up, but we still have severe consequences from the food.

I ranted on this once and one of my family members told me, what's the big deal, many doctors feel wheat is toxic to everyone anyways. I wanted to punch, but I was kind and did not...

I also have a coworker who's sister is ceilac. As a teacher we get food, often sweets, donated to us for appreciation in our teacher's lounge. When I long for just a bite of one of the sweets everyone else is eating my coworkers response is "my sister is celiac and she cheats all the time, just eat a piece." Um what?! No thank you...I'd rather not be up all night sick!

I do not understand why some people are just totally and completely insensitive.


I've had several people tell me they know other Celiac's or Gluten Intolerant people who are no where near as "neurotic" as I am. I was even told by a friend of the family that his wife is Celiac and she accepts our Church's regular Communion so it should be fine for me. I really want to find all these gluten lite people and explain to them how much trouble they cause people like me.


I've found two kinds of people at work. The ones who see how much weight I've lost and say, "I'm going to have to go gluten free". I tell them how hard it really is and how I will never be able to eat anything with gluten ever again. And then there are the ones who say, "I'd rather die." The last was my brother's response too and I am 99% certain he has Celiac. I tell them it's very hard but it's broadened my horizons to try things I've never tried before.
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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#19 sodakgal

 
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Posted 24 April 2011 - 04:57 AM

Oh... I just thought of something funny. I also have a few gluten free friends who have chosen to go gluten free because they think it will help their kids, and it does, so the whole household it gluten free, but none of them have Celiac. When I told these friends that i was Celiac, they were almost envious. Like I had just hit the jackpot of gluten intolerance. I guess i thought it was a funny reaction, and I wasn't offended, but then again, I am new to this whole thing, so I am sure at some point I am going to have a bad experience with CC, or friends, or restaurants. Just thought I would share.

Kendrea
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#20 NorthernElf

 
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Posted 24 April 2011 - 07:49 AM

Why so upset....

Well, not really upset - annoyed ? Someone used the word 'devalued' - that about sums it up. I was the original poster - got zinged by a "gluten-free" cookie that my daughter's friend made...on regular pans. So the annoying thing is that someone claiming to be gluten-free isn't...doesn't have to be, at least not too carefully. Someone like me (and many of us) have to be pretty meticulous about being TRULY gluten free.

Hard enough as it is to get people to "get" it (coworkers, waiters, etc.)...we are all familiar with people saying it's ok to cheat (like it's a weight loss diet) or saying it's ok because it's whole grain, not wheat (misinformed)...and to understand cross contamination issues as well.

It's kinda like saying I'm a diabetic if sugar makes me jumpy...not true & devalues a serious disease. No one would tell a diabetic they are 'lucky' because they have to reduce their sugar intake !

It's just a pet peeve of mine.....
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#21 MsCurious

 
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Posted 24 April 2011 - 08:13 AM

I know one person who is gluten free because "it makes me feel better" she says. Who knows, it might. But... she isn't really gluten "free" -- she's what I call "gluten lite". She doesn't eat pasta or bread. Except when she's out somewhere like Olive Garden when she'll eat the rolls because "I can't resist." Otherwise she never checks labels for wheat flour or barley malt or any of the other things we have to keep our eyes open for. She orders the grilled seasoned chicken and doesn't worry about the seasoning, or what else has been cooked on the grill. She might pick her croutons out of the salad, or maybe not if it's "too much trouble."

Yes, it annoys me because I feel like other people might not take me as seriously if we're out together. I actually don't go out to eat with her much because of this.



Sounds to me like she's "low carb" and shouldn't call herself gluten free at all. :angry: You're right, people like that, who claim to be gluten free... and let others believe its okay if they have "some" gluten are doing celiacs/intolerants a huge injustice. It's not fun to have to juggle all the gluten obstacles out there...along with trying to make sure restaurants/bakeries etc truly ARE gluten free.. and aren't just saying that for "trendy" purposes of sales. I will look for restaurants who have actually been certified gluten-free... the ones that have sent their chefs to gluten-free school to be certified. People like your "friend" make this a more difficult battle than it should have to be... and you can tell her I said so, if you want. :P :blink:
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~ MsCurious ~
"If you keep doing what you're doing... You'll keep getting what you're getting!"

tTg IgA IgG borderline 1/25/11 Posted Image
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Life is SO MUCH better gluten-free!

#22 srall

 
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Posted 24 April 2011 - 09:38 AM

I've had several people tell me they know other Celiac's or Gluten Intolerant people who are no where near as "neurotic" as I am. I was even told by a friend of the family that his wife is Celiac and she accepts our Church's regular Communion so it should be fine for me. I really want to find all these gluten lite people and explain to them how much trouble they cause people like me.


I've found two kinds of people at work. The ones who see how much weight I've lost and say, "I'm going to have to go gluten free". I tell them how hard it really is and how I will never be able to eat anything with gluten ever again. And then there are the ones who say, "I'd rather die." The last was my brother's response too and I am 99% certain he has Celiac. I tell them it's very hard but it's broadened my horizons to try things I've never tried before.


I had the EXACT same conversation with my brother, except I'm 110% sure he has celiac
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#23 domesticactivist

 
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Posted 24 April 2011 - 05:56 PM

I'm not even celiac and I am equally annoyed by "gluten lite" people and products claiming to be gluten-free. I want to be able to make choices based on real information, not people's ideas of good enough. Having a kid we are 99.9% sure has celiac (see sig) makes me especially sensitized to the issue. I don't want people poisoning him because it was good enough for someone else!

You asked why someone would go gluten-free if they don't need to because of celiac. Here are my reasons:

- My son needs to be gluten-free, and I want him to feel supported
- After taking gluten out I became sensitized to it and got brain fog and other symptoms from it
- Upon doing research for how to help my son I realized I showed all sorts of symptoms correlated with poor gut health and reactions to grains such as:
  • unexplained neurological symptoms and borderline low thyroid numbers
  • migraine auras
  • life-long alternating constipation and diarrhea
  • suspected bipolar disorder
- In hopes of making those things better I tried GAPS, and while I still struggle with moods and have a newish stutter, I've realized the following benefits:
  • no more dandruff
  • no more migraines or auras
  • no more neuro weirdness
  • no more herpes outbreaks
  • fewer sugar/junk cravings
  • weight loss (I was actually fine with my size already but about 20 lbs over what I had been in my early 20s. My weight dropped back down to that level and seems to be staying there)
  • much less gas
  • improved digestion
  • chronic bad breath gone
  • better/normal menstrual cycle
- I've seen improvements in my non-celiac kid and my non-celiac partner as well
- As for effort and expense, we already spent a big part of our budget on high quality real food, and did a lot of cooking. It's less work to make one thing for the whole family than something with gluten and something without gluten!

So for me, it would just be ridiculous to go back! I could probably cheat without causing lasting damage that I'd ever find, but why would I want to feel like crap again?

I think I'm a more black and white thinker than most people, though. I also have a harder time sticking to things I am willing to make exceptions on. If I said a little bit is ok every now and then the next thing you know I'd be having oatmeal for breakfast and pasta for dinner.

A lot of people don't feel the gluten but believe it's better for them not to have it. For those people, a muffin in the same case probably is fine. As you all articulated, the problem doesn't lie with them being gluten-lite, the problem lies with calling it gluten-free.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#24 GFinDC

 
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Posted 25 April 2011 - 09:01 AM

I think some people follow the gluten-free diet because of possible benefits related to autism. I don't think there is a proven link, but some people think it helps to be GFCFSF.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#25 Racer_J

 
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Posted 25 April 2011 - 11:54 AM

This thread sums up the quite nicely why there needs to be an actual federal law on the books about what gluten free is and what gluten free isn't just like there should be a federal law that says you have to disclose if anything was manufactured/processed/packaged in the same facility/building/production line as a top eight allergen. Thins things should not be "optional". It's the only way to stop the spreading attitude of this being a "fad" to protect consumers who absolutely no choice in the matter. It's great that gluten free is getting the attention that it is but, a lot of it is starting to be the wrong type of attention. It's approaching the "gray area" where facts become myths and myths become facts and, people have to avoid even more things that they shouldn't have to.

It really irks me when I see "naturally gluten free" on an item. That is entirely to vague. Is it or isn't it? Stop trying to cash in on something and actually protect your customer base.
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#26 Chiana

 
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Posted 25 April 2011 - 06:50 PM

I also have a coworker who's sister is ceilac. As a teacher we get food, often sweets, donated to us for appreciation in our teacher's lounge. When I long for just a bite of one of the sweets everyone else is eating my coworkers response is "my sister is celiac and she cheats all the time, just eat a piece." Um what?! No thank you...I'd rather not be up all night sick!

I do not understand why some people are just totally and completely insensitive.


It's so hard being polite in society. I would have had the hardest time not saying, "Well, she's an idiot and is going to die of cancer." That obviously wouldn't win me any fans. ;D

I just try to remind myself that most people are uncomfortable with people who do their own thing. A lot of people spend so much time and effort just doing things to 'fit in' (the reason fads exist in the first place) that seeing someone confidently break the mold makes them uncomfortable and makes them question their own world-view. It's possible that she is not questioning your health problem...Instead, perhaps it bothers her that you are unwilling to risk your health just to 'fit in'. What and how people eat is part of their identity. Every time there is a special event or milestone in my boyfriend's family, they celebrate by going out to eat. When I suddenly couldn't eat the same things and at the same places, it was like there was a giant wall put between me and the family. People bond and form groups over communal activities like eating. Once you stop participating, it's like you're telling them on an unspoken level that you don't want to be part of their group anymore.
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#27 hnybny91

 
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Posted 26 April 2011 - 08:05 AM

Mu MIL said to me at Easter, "Oh! You are still doing that?" in reference to my not eating gluten. I said, "Yeah, it is either not eat gluten or die so I choose gluten free forever!"
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#28 Gemini

 
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Posted 26 April 2011 - 10:06 AM

It's so hard being polite in society. I would have had the hardest time not saying, "Well, she's an idiot and is going to die of cancer." That obviously wouldn't win me any fans. ;D

I just try to remind myself that most people are uncomfortable with people who do their own thing. A lot of people spend so much time and effort just doing things to 'fit in' (the reason fads exist in the first place) that seeing someone confidently break the mold makes them uncomfortable and makes them question their own world-view. It's possible that she is not questioning your health problem...Instead, perhaps it bothers her that you are unwilling to risk your health just to 'fit in'. What and how people eat is part of their identity. Every time there is a special event or milestone in my boyfriend's family, they celebrate by going out to eat. When I suddenly couldn't eat the same things and at the same places, it was like there was a giant wall put between me and the family. People bond and form groups over communal activities like eating. Once you stop participating, it's like you're telling them on an unspoken level that you don't want to be part of their group anymore.


I agree with your sentiments about this subject and think you have hit the nail on the head. People become extremely uncomfortable with those who have will power, especially when it comes to food. Like a bunch of teen-agers, even adults, it seems, want to be like everyone else and fit in, which is mind boggling to me. I don't understand why people focus so much on food and make such a big deal out of eating gluten free. I don't care what people eat, that's their business. I do what I have to do and really don't care whether others pretend at being gluten free or not. I don't think it diminishes my need to be strictly gluten-free. I have come to learn after doing this for 6 years that the vast majority of the American population have no clue what healthy eating is and probably never will. I can't change that so don't care anymore....I only care about myself with regards to this diet and people can think what they want. I don't really understand why this should bother Celiac's so much.

What does bother me is when people find out I have celiac disease, they always say they are sorry. I always tell them there is no need to be sorry as I am comfortable with it all and probably eat a much better and varied diet than most people. That really gets their little brains thinking.... :P
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#29 mushroom

 
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Posted 26 April 2011 - 12:37 PM

I only care what people think to the extent that it will keep me safe from gluten, especially in a restaurant situation. I do not want anyone in a restaurant with the attitude that it is not important. And that I am following a fad diet, or drawing attention to myself, or all the other stupid attitudes that people have toward non-gluten eaters. I just want to be taken seriously without fuss.
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#30 jenngolightly

 
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Posted 26 April 2011 - 01:21 PM

I agree with your sentiments about this subject and think you have hit the nail on the head. People become extremely uncomfortable with those who have will power, especially when it comes to food. Like a bunch of teen-agers, even adults, it seems, want to be like everyone else and fit in, which is mind boggling to me. I don't understand why people focus so much on food and make such a big deal out of eating gluten free. I don't care what people eat, that's their business. I do what I have to do and really don't care whether others pretend at being gluten free or not. I don't think it diminishes my need to be strictly gluten-free. I have come to learn after doing this for 6 years that the vast majority of the American population have no clue what healthy eating is and probably never will. I can't change that so don't care anymore....I only care about myself with regards to this diet and people can think what they want. I don't really understand why this should bother Celiac's so much.

What does bother me is when people find out I have celiac disease, they always say they are sorry. I always tell them there is no need to be sorry as I am comfortable with it all and probably eat a much better and varied diet than most people. That really gets their little brains thinking.... :P

I agree. I wonder if this freedom from caring comes with experience or age? I'm comfortable with my lifestyle and I couldn't care a bleep about what other people eat. I also hate to hear, "I'm sorry" and get the pity-face-- as if not eating their food is devastating for me: "I'm sorry you can't eat this tuna slop on old rye bread that we ordered for everyone. You must feel like crap because you can't eat it." Blech.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010




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