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Giving Lip-Service To Eating Gluten Free Makes Me Sad


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#16 mushroom

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Posted 29 May 2011 - 06:08 PM

Or we may have to do a palm reading :blink:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
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#17 Monklady123

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Posted 30 May 2011 - 03:15 AM

Oh yes, I can TOTALLY relate. I call these people "gluten lite". Really what some of them are trying to do is to cut down on carbs. Pasta, white bread, etc. Which isn't a bad thing in itself. Just don't call yourself a celiac! And don't say you're gluten free! :angry:

I went to a church meeting/social event on Friday night (social part first, meeting following, lol). The host got food from a local restaurant and asked for things specifically gluten free because there are two of us in the group. We got there and she announced that she's decided to go gluten free also because after talking to a friend she's thinking that some of her symptoms sound like gluten (fatigue, body aches, bloating).

So in the course of the conversation she said that she always "kind of rolled my eyes at people who said they needed to stop gluten, but then I've been reading..." um.. :blink: So that means I've been just making it up all this time? And the other woman in our group who was 100% better within a week -- that was all in her head?

Well, I really think that this woman will be one of the "gluten lite" ones, but we will see...

What bothers me the most about these people is that there might be waiters in restaurants who see them asking for gluten free, but then see them eating a salad with croutons, or just taking the croutons out, or getting a burger and removing the bun. Then the waiter might get the wrong idea about what "gluten free" really means for those of us who HAVE to be truly gluten free.

Yeah, I hear you. :blink:

On the other hand, as someone said in this thread, it has caused more and more gluten free products to be available. I'm thinking especially of the baking stuff, which for me is the most problematic. Everything else I cook is easily made gluten free (most of it is already anyway), but those chocolate chip cookies... lol. :lol:
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#18 No.Wheat.For.Me

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Posted 30 May 2011 - 05:40 AM

Like my chiropractor ... or should I say my ex-chiropractor. Last time I was there I commented that I was really sore from accidentally eating some gluten. He went off on this tangent about how his wife has gone on this gluten-free kick so now she only makes their cookies out of barley and spelt and oats .... and this celiac thing is such a fad and next month it'll be something different. Then when I insisted that all those things his wife cooks with have gluten and that celiac is really serious and I can get sick from a few crumbs he called me a freak. :o

Time to shop for a new chiro.


My daughter was diagonosed with Diabetes and I was talking to the diabetic dietician about how I had gone gluten free and how much better I was feeling, and thought that my daughter also had problems with gluten grains. She said gluten-free eating was just a fad and the chances of me or her having it were almost zero. She said that Celiac Disease was very, very, very rare. They fed her wheat while she was in there, not even bothering to check to see if she had celiac disease. It seems like hospitals are so far behind the times.
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#19 IrishHeart

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Posted 30 May 2011 - 05:51 AM

My daughter was diagonosed with Diabetes and I was talking to the diabetic dietician about how I had gone gluten free and how much better I was feeling, and thought that my daughter also had problems with gluten grains. She said gluten-free eating was just a fad and the chances of me or her having it were almost zero. She said that Celiac Disease was very, very, very rare. They fed her wheat while she was in there, not even bothering to check to see if she had celiac disease. It seems like hospitals are so far behind the times.


It's just appalling that people in the medical profession still think celiac disease (or gluten intolerance) is rare!!! :angry: :blink: for pete's sake. Read a medical journal once and a while...stay current!! OMG--this makes me nutz!! :blink:
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#20 BethM55

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Posted 30 May 2011 - 06:05 PM

Thanks for the moral support! And yes, when I referred to "the code", it's sort of like honor among thieves, or at least among gluten free folk. I do like the idea of the secret hand shake, though, with the dusting off of hands.

I appreciate having a place to vent my frustrations, among people who understand!
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Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.

#21 gfreecollegegirl

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Posted 30 May 2011 - 07:48 PM

I don't know how many times I've dealt with similar issues in the past year of going gluten free. No matter how many times I've explained to people what Celiac and gluten intolerance (and wheat allergy) are, people just can't seem to wrap their minds around it! Even my own mom doesn't quite get it yet, even though I've shared everything I've learned with her. I've had my aunt, who was inspired to go gluten free by my example, insist that she can have spelt flour because it "doesn't bother her" and "it's a distant cousin of wheat"...and supposedly some lady wrote in a book that it's okay for most gluten intolerant people! :rolleyes: This same aunt also does not have her own dedicated toaster or condiments. I love her to death, but sadly, she lets her daughter do all the research instead of doing it herself. What is also frustrating is my own sister's attitude. She has been showing many symptoms of a gluten intolerance or Celiac for a long time, but refuses to change her diet. Every time she makes something like cookies, she gets sick. Her stomach is super sensitive like mine. We're both lactose, dairy intolerant. Yet, she thinks she's fine because she "eats a lot of bread". I don't think she knows how miserable she really is. :huh:
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#22 alex11602

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Posted 31 May 2011 - 06:27 AM

I don't know how many times I've dealt with similar issues in the past year of going gluten free. No matter how many times I've explained to people what Celiac and gluten intolerance (and wheat allergy) are, people just can't seem to wrap their minds around it! Even my own mom doesn't quite get it yet, even though I've shared everything I've learned with her. I've had my aunt, who was inspired to go gluten free by my example, insist that she can have spelt flour because it "doesn't bother her" and "it's a distant cousin of wheat"...and supposedly some lady wrote in a book that it's okay for most gluten intolerant people! :rolleyes: This same aunt also does not have her own dedicated toaster or condiments. I love her to death, but sadly, she lets her daughter do all the research instead of doing it herself. What is also frustrating is my own sister's attitude. She has been showing many symptoms of a gluten intolerance or Celiac for a long time, but refuses to change her diet. Every time she makes something like cookies, she gets sick. Her stomach is super sensitive like mine. We're both lactose, dairy intolerant. Yet, she thinks she's fine because she "eats a lot of bread". I don't think she knows how miserable she really is. :huh:


I don't know how old your sister is, but mine is like that too and I think that feeling bad after just ends up being normal. It's sad to see that, but I'm not sure there is really anything we can do.

And by the way I took my daughter to the local hospital and the triage nurse did not know what celiac or gluten was, I had to tell her how to spell it for the chart and the one doctor we saw wasn't much better. I don't think it helps that we don't have test results though, our doctor actually diagnosed us originally over the phone based on symptoms and dietary response, not worth going back on gluten for tests though.
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#23 angel9165

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Posted 31 May 2011 - 12:11 PM

What gets me the most is hearing "Oh, I wonder if that's what I have cuz I'm always bloated, etc?" Really, people??? What I always say is "if you suspect you may have intolerance to wheat, I suggest you see a GI doctor and if that's not possible, cut it completely out of your diet and if it makes a difference, you most likely do have an issue". At first it felt good that I wasn't instantly labeled a freak and someone could relate..now it just irritates me.

We celebrated my (non-celiac) son's 15th birthday this weekend with a yummy gluten-free chocolate cake and cupcakes. Not one single crumb was left over! B)
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Diagnosed w/ Celiac disease on Sept 1st, 2010

#24 Judy3

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Posted 31 May 2011 - 04:37 PM

My issue is with people who call eating gluten-free a "fad"....fad? :blink: Celiac disease almost killed me :blink:

As I often say...there needs to be a better understanding of what 'gluten intolerant' really means. I always cringe when someone says it's an "allergy"....sigh...

I suppose it's easier than explaining "It's an autoimmune response to the...." by then, their eyes have glazed over like a donut... :lol: :lol: :lol:


Oh yeah I know what you mean about the glazed over look.. lol I've run across several people that are 'fake gluten free' Why would anyone do this if they didn't have to? That's all I wonder.

I've learned to make chocolate cupcakes and other goodies and I bring them to get togethers and no one knows the difference until I pick one up and take a bite and then I get the 'You can't have that...' I just laugh and say 'yes I can, I made them and they're gluten free' Surprised looks from all because they couldn't tell the difference.. heehee

Two can play at this game!!! LOL LOL LOL
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#25 Judy3

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Posted 31 May 2011 - 04:41 PM

I have a colleague who is also celiac and I've watched her more than once just scrape the toppings off a sandwich. And she's confessed to me that she drinks beer every once and while. And then she'll look to me for sympathy on those days when she's not feeling well because she thinks that as a celiac, I can relate. Um no, I can't. I NEVER cheat, so I really have no sympathy for someone who makes themselves sick!



Same with me, no patience for that at all. My doctor's nurse asked me if I ever cheat and I said 'Absolutely not!!, the pain I experienced for the last three years and the nausea I had for my entire life is not worth it whatsoever' She just looked at me and smiled.
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#26 Niebr

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Posted 31 May 2011 - 09:06 PM

I cannot relate to this yet, as I never had this type of encounter, yet I cannot see anyone willing to cheat and hurt themselves. I have read the complications from cheating (going on as if you dont have celiacs) and the complications alone scare me enough not to cheat!
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The only dumb question, is the one that remains unasked.


#27 BethM55

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Posted 03 June 2011 - 07:46 AM

Oh yeah I know what you mean about the glazed over look.. lol I've run across several people that are 'fake gluten free' Why would anyone do this if they didn't have to? That's all I wonder.

I've learned to make chocolate cupcakes and other goodies and I bring them to get togethers and no one knows the difference until I pick one up and take a bite and then I get the 'You can't have that...' I just laugh and say 'yes I can, I made them and they're gluten free' Surprised looks from all because they couldn't tell the difference.. heehee

Two can play at this game!!! LOL LOL LOL


Well done, I love your attitude! I've brought gluten free brownies made from a Trader Joe's mix, to parties, and they disappear faster than the wheat based brownies. Yes, gluten free can taste great! :lol:
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Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.


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