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This is kind of the point, well my point anyway. Your "should" isn't other people's "should". I think people should know basic probability (we are exposed to it, use it, and need to use it every day), but many people would disagree with me and feel they get by just fine without knowing it. I agree with you that it would be better if people would know where their food comes from, but they get by just fine without knowing that information - or fine enough for them.

So, "should" is very subjective here.

Precisely. Thanks for the excellent explanation Tarnalberry. I was about to launch into this next, but you beat me to it. And, I always feel like I need to brush up on probability, lol!

Great message tarnalberry.

I don't expect others to wear their celiac as badge of honor. All we can do is hope to educate others and not be ashamed of something that we are inflicted with. We can talk choices and how we fell like who's should etc. but the bottom line for me is to present choices and educate those interested. It's up to them if they listen and do or don't want to learn.

Ken

Yes, this is the second point I was going to make. I may have been stupid about wheat, but that was an ignorance that was easily and readily corrected as soon as I needed to apply that information.

Currently, up to 99 percent of the population in the U.S. do not think that wheat/gluten is an issue for themselves. It actually serves the interests of people with intolerances to share and teach this information in a way that will create heightened awareness and allies, especially of people in the food industry.

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I teach third and fourth grade. I do a nutrition unit and MY kids know how to read labels, by golly! We read our snack labels for a month and voted whether each one was nutritious, kind of nutritious, or junk. They know that the primary ingredients are listed first. They know that words ending in -ose are sugars. They know that whey and casein and lactose are all kinds of dairy. And they know, from watching me not eat things all year, what celiac and gluten mean. If I eat a gluten-free brownie some child always rushes over and says, "But that has wheat in it!" and I have to tell about garbanzo bean flour or rice flour. Sometimes they even give me gluten free treats on holidays--very cute.

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We have a little sign up at our farmers market saying Celiac Spoken Here. I'm amazed at the number of questions we ge from people who don't know who are interested and from people who are celiac or suspect they are. A few have since joined the forum. People just don't know what it is unless it touches them or their family. 3 years ago I had never heard of it even though I lecture at a culinary school and work for another university. It tells me we need to do much more publicity and education.

Ken

Precisely. Thanks for the excellent explanation Tarnalberry. I was about to launch into this next, but you beat me to it. And, I always feel like I need to brush up on probability, lol!

Yes, this is the second point I was going to make. I may have been stupid about wheat, but that was an ignorance that was easily and readily corrected as soon as I needed to apply that information.

Currently, up to 99 percent of the population in the U.S. do not think that wheat/gluten is an issue for themselves. It actually serves the interests of people with intolerances to share and teach this information in a way that will create heightened awareness and allies, especially of people in the food industry.

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I was at Sam's Club the other day and ordered a hot dog no bun. The employee proceeded to pull out a bun to put my hot dog on. I repeated to her no bun and even had another employee tell her NO BUN. I was thinking just pick up the dang hot dog, wrap it in tin foil, and give it to me!!! No I am not kidding when I tell you she walked right over to me and handed me a hot dog ON A BUN. I looked at her and very politely said I asked three times for no bun and she said with a cute little attitude "Well what do you want me to do throw it away?" UGH!!! I told her i didn't care what she did with it but I was "allergic" to bread and could not have it even touch my hot dog. When she came back with my bunless hot dog she had the idacity to say to me "Wow sucks for you to be allergic to bread that must be really hard."

I thanked her and walked away. Turning away from her I just wanted to yell at her and say sucks for me?!! YOU HAVE NO IDEA HOW F*&*#$G HARD IT IS OR WHAT I GO THROUGH JUST TO BE HEALTHY SOMETIMES!!!!!!!!!!!!!!!!! Thank you for letting me vent. LOL

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People don't mean to be ignorant.. it's because most people simply don't know (hence the definition of the word).

My son WAS in the public schools. The teacher was very good about asking about foods.. we gave instructions to call us about ALL foods my son was going to eat. They were having an ice cream party with toppings. I said, specifically, let me know ANY topping you will be using. She described each and everything was ok. Turns out they gave the kids licorice (twizlers) to eat with the ice cream. My son ate it.. of course not knowing. Of course in my oldest son he doesn't have stomach issues... he breaks out and goes into ADHD mode (oh yippie).... so for the next 3 weeks at school we got notes about how 'bad' he was being.

Had a teacher conference.. asked if he had any foods with Gluten.. oh no we made sure. I noticed she had twizlers. I asked "Have you ever given him those?" She responded, "Yes.. it's just sugar...".....

I asked, "Um.. did you ever read the ingredients?" ... She responded slowly.. "Um.. no."

I said, "Please read the second ingredient to me"

She started to cry (I did feel bad for her..)... She said," IT IS MADE OF SUGAR AND WHEAT!>!>!"

Hence why my children are now homeschooled - at least I know they aren't getting sick! BTW the teacher was a great teacher.. just well.. you can see how it's a problem.

BTW.. our favorite show on the Food Network now is Unwrapped and on discovery HOW ITS MADE. I think these shows ought to be MANDATORY in the school system! :)

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Sorry but I do think some people are just stupid.

I don't mean not knowing everything gluten is in, that is understandable.

But not knowing where flour comes from? Not knowing what french fries are made out of?

Yeah. Ive known that stuff since I was 3 or 4. It's common knowledge.

But then again, you are assuming that the french fries are made from scratch. A lot of french fries (should be:potatoes, oil, salt) are made out of a flour/potato mixture that is formed like french fries. Companies do this to make the results more uniform and to help their coloring to make them look like "they should look" (Be suspicious if all the french fries are exactly the same size.) I feel like an idiot asking "What are the french fries made out of?" but it is worth it. I have to sound like an idiot, like I don't know how to make food, because of what companies do to produce low-cost, high-profit foods.

I grew up with a mom who cooked every meal for us and packed our lunches for school. She made simple stuff: meat, side dish, vegetable. I saw her make stuff from scratch, so I knew that there were different ingredients in a dish. If I ate somewhere else and thought it tasted good then I had to learn to make it myself, because my mom wouldn't buy any of ready-made stuff. (When I was a kid those ready-made meals were expensive and for a family of 6 it was waaaay too expensive. Mcdonalds was a special treat if we were on a road trip.) Basically, I grew up seeing how individual ingredients got turned into a dish. It made me ask questions and I am really grateful to my mom and dad for that. I also firmly believe that I was so interested in cooking because I tended to cook gluten free stuff and I felt better when I ate my own food. (I am just getting diagnosed now. So for me it is strange that I naturally tend to be gluten free and the change to completely gluten free is less hard than I thought it would be.)

I think the only truly ignorant comments come from people who have asked a question, gotten a clear answer, and still make comments that they should have been able to figure out for themselves.

Calicoe explained in this thread how white flour was not clearly wheat flour for her. Well think about it, flour is a generic term it just means ground up grain, legume or vegetable. Yes most of us will think of the most common flour in the US, wheat flour, but I think all of you should know how many (thankfully) flours are available: Rice, corn, potato, chickpea, millet, locust bean*, guar bean* etc.

It's too bad that we don't know what ingredients are being used unless we know how to cook or look up recipes. It is one of the reasons food companies can put all of these unnatural ingredients into food and no one complains.

*The flour made out of these are called gum in English but in other languages they are often called locust bean flour or guar bean flour

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A little off-topic maybe, but I NEVER try to explain to someone in a restaurant that I have a problem with gluten. Rarely does someone ever understand what that is. I always say that I can't eat (and sometimes say I'm "allergic") to wheat, barley, rye and oats. I don't think that the majority of people in the US have even heard of gluten, so it's pointless telling people that you can't have it. Obviously, most people don't even know what wheat is in, so they aren't going to know what gluten is in. I'm always surprised when people actually DO know what gluten is.

I do expect more from those in the medical profession - nurses and doctors should have more training in nutrition, especially nurses who deliver food to patients in hospitals.

:)

I do this a lot too, especially since I have to order food in other languages often. If I try and pronounce something like Z

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I think reading labels is a big thing. I think too many people just "assume".

We were at the store one day and one of my kids saw a woman looking at something and he wanted some. He went over and read the label out loud. (because of allergies, labels are one of the first things I teach them to read) This package had all kinds of stuff you would not expect in the product. She looked at him then turned her package over to see if that was really what he read. About that time he pops in "Mom, and it has ### calories per serving!!" Her eyes nearly popped out and she put it on the shelf and nearly ran from it. On the surface this product looked good and healthy. I guess packaging does have an impact. The nutrition label told another story.

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This is a fun thread, so I thought I'd add my $0.02 worth:

1. I agree there's no point in telling restaurants that you are "gluten-free". I usually tell them I am "extremely allergic to wheat" -- that seems to work. I think they have visions of me going into convulsions on their floor if they put croutons on my salad.

2. Ignorance is different from stupidity. I don't think people are stupid if they don't know what gluten is, but I would give an eye roll to anyone who doesn't know that flour is made from wheat.

3. I don't think it's fair to expect the public at large to know about all the sources of hidden gluten. Can all of you say that you ALWAYS knew that you needed to look for gluten in candy, chocolate bars, dried fruit, nuts, potato chips, etc? I sure as hell didn't!

4. My favorite anecdote: among my friends, they seem okay with me not eating bread, etc., but get angry because I "won't" drink beer. Seriously, I have had at least ten people say, "Oh, but you can drink Budweiser. It's made from rice." I don't know where this idea comes from, but it's apparently very common.

5. This thread reminds me of a conversation I had with a friend a few years ago at the State Fair. We were people-watching and commenting on the large percentage of "plus-sized" people at the Fair. I commented that it's a shame that most people don't know how bad processed food/junk food is. My friend became very irate. She said "They know! They know! They're just lazy and don't WANT to eat healthy!"

I don't agree. I think most people just don't spend a lot of time thinking about nutrition and rely on the government and advertising to tell them what is "healthy". And there is a lot of false and misleading information out there. Obesity and obesity-related diseases take a long time to manifest any symptoms, so it's natural for people to think they don't have to worry about it. I've had a lot of people tell me "I don't care what happens to me when I'm 65. What's the point of living forever if you don't get to have any fun along the way?" I don't agree with them, but it's hard to say that they are "wrong".

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I was at Sam's Club the other day and ordered a hot dog no bun. The employee proceeded to pull out a bun to put my hot dog on. I repeated to her no bun and even had another employee tell her NO BUN. I was thinking just pick up the dang hot dog, wrap it in tin foil, and give it to me!!! No I am not kidding when I tell you she walked right over to me and handed me a hot dog ON A BUN. I looked at her and very politely said I asked three times for no bun and she said with a cute little attitude "Well what do you want me to do throw it away?" UGH!!! I told her i didn't care what she did with it but I was "allergic" to bread and could not have it even touch my hot dog. When she came back with my bunless hot dog she had the idacity to say to me "Wow sucks for you to be allergic to bread that must be really hard."

I thanked her and walked away. Turning away from her I just wanted to yell at her and say sucks for me?!! YOU HAVE NO IDEA HOW F*&*#$G HARD IT IS OR WHAT I GO THROUGH JUST TO BE HEALTHY SOMETIMES!!!!!!!!!!!!!!!!! Thank you for letting me vent. LOL

OMG!! :lol: That girl serving the hotdogs just made me mad! haha

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But then again, you are assuming that the french fries are made from scratch. A lot of french fries (should be:potatoes, oil, salt) are made out of a flour/potato mixture that is formed like french fries. Companies do this to make the results more uniform and to help their coloring to make them look like "they should look" (Be suspicious if all the french fries are exactly the same size.) I feel like an idiot asking "What are the french fries made out of?" but it is worth it. I have to sound like an idiot, like I don't know how to make food, because of what companies do to produce low-cost, high-profit foods.

I grew up with a mom who cooked every meal for us and packed our lunches for school. She made simple stuff: meat, side dish, vegetable. I saw her make stuff from scratch, so I knew that there were different ingredients in a dish. If I ate somewhere else and thought it tasted good then I had to learn to make it myself, because my mom wouldn't buy any of ready-made stuff. (When I was a kid those ready-made meals were expensive and for a family of 6 it was waaaay too expensive. Mcdonalds was a special treat if we were on a road trip.) Basically, I grew up seeing how individual ingredients got turned into a dish. It made me ask questions and I am really grateful to my mom and dad for that. I also firmly believe that I was so interested in cooking because I tended to cook gluten free stuff and I felt better when I ate my own food. (I am just getting diagnosed now. So for me it is strange that I naturally tend to be gluten free and the change to completely gluten free is less hard than I thought it would be.)

I think the only truly ignorant comments come from people who have asked a question, gotten a clear answer, and still make comments that they should have been able to figure out for themselves.

Calicoe explained in this thread how white flour was not clearly wheat flour for her. Well think about it, flour is a generic term it just means ground up grain, legume or vegetable. Yes most of us will think of the most common flour in the US, wheat flour, but I think all of you should know how many (thankfully) flours are available: Rice, corn, potato, chickpea, millet, locust bean*, guar bean* etc.

It's too bad that we don't know what ingredients are being used unless we know how to cook or look up recipes. It is one of the reasons food companies can put all of these unnatural ingredients into food and no one complains.

*The flour made out of these are called gum in English but in other languages they are often called locust bean flour or guar bean flour

Yes, thanks Parla. You are exactly right. I grew up in a household that ate a lot of processed foods, and didn't see meals prepared from scratch. I think most people think about foods in groups rather than as separate ingredients (e.g. bread, pasta, vegetables, meat, fats, etc.). For me, it was enough to just avoid white flour until I needed to avoid all wheat products as well. Didn't really think about grains much unless it was explicitly stated.

And now that I have educated myself on this disease for my own survival, I am definitely not alone. I have been conversing on another forum with a 61-year-old English male who is suffering from the effects of an undiagnosed IBD. I have been supplying a lot of links on IBDs and celiac disease, but he was resistant at first. Finally, he started to be more receptive because he is still sick in spite of following his doctor's orders to the letter. He did say that he cut out all wheat products and dairy, and had two pieces of white bread toast for breakfast every morning, although his GI distress mysteriously continued ...

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That still leaves open for debate the option that people might have a right to eat unhealthy and die early because of it. That leads to issues about who pays for their health and end-of-life expenses.

"Would be better off", perhaps. "Should", who are you to tell me.

Don't get me wrong. I'm not in the business of telling people what to do. If people have the knowledge to eat healthy and still choose not to, that is their right. If a diagnosed celiac doesn't want to eat a gluten-fre diet, that is his right. I get what you and Tarnalberry are getting at, but I stand by my assertion that everyone *should* know what is in their food. I've known since 2nd grade health class. Obviously, not everyone had a similar school experience. We need more teachers like frec. It should be basic curriculum like reading, writing, and basic math. Like someone here said, the food manufacturers put whatever they want in their products and gets away with it because the majority of the public is totally unaware.

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Don't get me wrong. I'm not in the business of telling people what to do. If people have the knowledge to eat healthy and still choose not to, that is their right. If a diagnosed celiac doesn't want to eat a gluten-fre diet, that is his right. I get what you and Tarnalberry are getting at, but I stand by my assertion that everyone *should* know what is in their food. I've known since 2nd grade health class. Obviously, not everyone had a similar school experience. We need more teachers like frec. It should be basic curriculum like reading, writing, and basic math. Like someone here said, the food manufacturers put whatever they want in their products and gets away with it because the majority of the public is totally unaware.

I'd wager that most people probably did learn it, and forgot. They had other things to learn about. Just like they learned about math things they don't use any more that I maintain that they "should" know, but they forgot about. And just like they learned geography and history that they forgot about (as is proven by surveys about where people think countries are), which - for the sake of politics - I also think they "should" know about. But people have different ideas on what they need to know, and only keep so much information active in their brains.

Know what shocks me? An awful lot of people don't know where their sacrum is! How can you not know that?! It's rather important, given that we pick up heavy objects not infrequently, it's prone to being tweaked by that activity, and prone to not recovering without some attention to care. But people don't think they need to know about anatomy either. Or scoliosis - we're almost all tested for it in grade school, but people don't know what it is, what it means, or what it looks like, despite the fact it can greatly affect us - painfully - for our lives.

(We can all come up with these examples, I know... Kinda fun too, though... 'cause you learn new things... :) )

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I was at Sam's Club the other day and ordered a hot dog no bun. The employee proceeded to pull out a bun to put my hot dog on. I repeated to her no bun and even had another employee tell her NO BUN. I was thinking just pick up the dang hot dog, wrap it in tin foil, and give it to me!!! No I am not kidding when I tell you she walked right over to me and handed me a hot dog ON A BUN. I looked at her and very politely said I asked three times for no bun and she said with a cute little attitude "Well what do you want me to do throw it away?" UGH!!! I told her i didn't care what she did with it but I was "allergic" to bread and could not have it even touch my hot dog. When she came back with my bunless hot dog she had the idacity to say to me "Wow sucks for you to be allergic to bread that must be really hard."

I thanked her and walked away. Turning away from her I just wanted to yell at her and say sucks for me?!! YOU HAVE NO IDEA HOW F*&*#$G HARD IT IS OR WHAT I GO THROUGH JUST TO BE HEALTHY SOMETIMES!!!!!!!!!!!!!!!!! Thank you for letting me vent. LOL

I've gotten similar. When hearing of my food allergies, people would say stuff like, "I would just die!" Or, "If I couldn't eat that, I would just KILL myself!" To which I love to reply, "Wow! Sucks to be you!"

And the thing is... I used to think that way too. But when I realized how much better I felt by stopping the eating of those allergens, there is no way I would go back.

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I've gotten similar. When hearing of my food allergies, people would say stuff like, "I would just die!" Or, "If I couldn't eat that, I would just KILL myself!" To which I love to reply, "Wow! Sucks to be you!"

What a great comeback!!!

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Yeah, those are funny. As if it is a choice. A couple of weeks before I figured out my wheat allergy, there was a family visiting our house who had a little girl with a wheat allergy. At the time, I still thought my own was all dairy related. So I guess my roommate felt comfortable to make a snide comment about the little girl's intolerance to wheat. People on this thread have a hard time understanding how I could forget the connection between white flour and wheat, but I'll never understand people who make snide comments about intolerances - and this was before I knew about my own. I do not understand people who who cannot accept difference, even if it is differences in food. This is a person who prides herself on social and racial understanding, is vegetarian, but she thought it was fine to make a sarcastic comment about a little girl who can't eat wheat.

I didn't appreciate it, and I told her so. A few weeks later, I find out that I'm also allergic to wheat. And then a couple of weeks after that, corn, and maybe eggs and soy ... She didn't say anything, but she just looked at me when my list got longer, as if I'm making it all up. I know what she's thinking, and that's worse, because she will simply continue to think it without ever having to risk being confronted or corrected. She is a big wheat eater and baker, by the way.

In many ways, blatant ignorance can be your friend.

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I've gotten similar. When hearing of my food allergies, people would say stuff like, "I would just die!" Or, "If I couldn't eat that, I would just KILL myself!" To which I love to reply, "Wow! Sucks to be you!"

And the thing is... I used to think that way too. But when I realized how much better I felt by stopping the eating of those allergens, there is no way I would go back.

I hate hate HATE these comments!

How sad is your life if you think you would KILL yourself if you had to change the way you eat?

Yes it is hard but it is not the end of the world and I certainly never contemplated suicide because I could not eat a few grains.

The people who say these things don't realize that they are actually making you feel worse. I love hanging out with other people who have intolerances or follow a vegan diet because they have some idea about what you are going through (although it makes it very hard for us to all go out to eat together :lol: )

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I'd wager that most people probably did learn it, and forgot. They had other things to learn about. Just like they learned about math things they don't use any more that I maintain that they "should" know, but they forgot about. And just like they learned geography and history that they forgot about (as is proven by surveys about where people think countries are), which - for the sake of politics - I also think they "should" know about. But people have different ideas on what they need to know, and only keep so much information active in their brains.

Know what shocks me? An awful lot of people don't know where their sacrum is! How can you not know that?! It's rather important, given that we pick up heavy objects not infrequently, it's prone to being tweaked by that activity, and prone to not recovering without some attention to care. But people don't think they need to know about anatomy either. Or scoliosis - we're almost all tested for it in grade school, but people don't know what it is, what it means, or what it looks like, despite the fact it can greatly affect us - painfully - for our lives.

(We can all come up with these examples, I know... Kinda fun too, though... 'cause you learn new things... :) )

You bring up a very good point. Those of us who haven't felt well since childhood knew food was the cause, even if we couldn't pinpoint it was gluten at the time. So we probably paid more attention when we were taught about food, and made a point to remember it. While others just filed it away to the dark, dusty corners of their minds. So Tim-in-Va, you were right all along!

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Yeah, those are funny. As if it is a choice. A couple of weeks before I figured out my wheat allergy, there was a family visiting our house who had a little girl with a wheat allergy. At the time, I still thought my own was all dairy related. So I guess my roommate felt comfortable to make a snide comment about the little girl's intolerance to wheat. People on this thread have a hard time understanding how I could forget the connection between white flour and wheat, but I'll never understand people who make snide comments about intolerances - and this was before I knew about my own. I do not understand people who who cannot accept difference, even if it is differences in food. This is a person who prides herself on social and racial understanding, is vegetarian, but she thought it was fine to make a sarcastic comment about a little girl who can't eat wheat.

I didn't appreciate it, and I told her so. A few weeks later, I find out that I'm also allergic to wheat. And then a couple of weeks after that, corn, and maybe eggs and soy ... She didn't say anything, but she just looked at me when my list got longer, as if I'm making it all up. I know what she's thinking, and that's worse, because she will simply continue to think it without ever having to risk being confronted or corrected. She is a big wheat eater and baker, by the way.

In many ways, blatant ignorance can be your friend.

This type of situation really gets my goat. People will bend over backwards to accomodate vegetarians, and most of them are vegetarians completely by choice. But heaven forbid someone with a food allergy or intolerance needs some special consideration. And for a vegetarian herself to act that way, and yet expect to be accomodated-- It's shameful.

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This is a great thread, and, I have heard most of these things over my 8 yrs of being gluten free. I have worked with the same people now for over 3 yrs, and still, I hear some of these comments, just when I think they understand, they will ask another "stupid" question! "Flour doesn't contain wheat, does it?" "Why can't you eat licorice?", to which I always say, "Read the ingredients!" "Just one won't hurt, will it?"

I do expect more from those in the medical profession - nurses and doctors should have more training in nutrition, especially nurses who deliver food to patients in hospitals.
As for this comment, doctors and nurses are not given much nutrition info, what upsets me, is when a dietician doesn't know! It is his/her job to know what gluten free means, and if he/she doesn't, then they better be looking it up, and knowing what they are feeding that patient, before the food goes out of that kitchen!!! I do not blame nurses, and they do not deliver food to patients, kitchen staff deliver food to patients, never nurses. When I had surgery last August, I informed the hospital before hand that I am celiac, I even gave them a medication listing of gluten free meds. So, after surgery, they came to me with some vitamins the doctor wanted me to take, I asked if they were gluten free, the nurse says, "I don't know!" I asked if she knew the brand name--nope. I refused to take them! If they could not prove the gluten free status of the pill, then I was not taking them. They also lost my reading glasses, so I could not read the ingredients of my food, so anything I was not sure of, I would not eat. I have many, many intolerances, I also do not trust others to read ingredients to me--many will skip the words they don't know, which often are the things we can't have! So--we always have to be on our toes, and have a good sense of humor!!! :lol:

How many of us have heard, "Nope, I am reading the ingredients now and gluten is not listed!"

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I do not blame nurses, and they do not deliver food to patients, kitchen staff deliver food to patients, never nurses.

I do blame the nurses!!

Every time I have been in the hospital and told them that I am milk ALLERGIC (and I go into a long speech about it, not just a passing statement) they write on the chart lactose INTOLERANT. Then the kitchen staff brings all these modified milk products. Products with modified sugars will not help me when I have an issue with the protein.

The kitchen staff may bring the stuff but the nurses tell them what to bring!

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I'd wager that most people probably did learn it, and forgot. They had other things to learn about. Just like they learned about math things they don't use any more that I maintain that they "should" know, but they forgot about. And just like they learned geography and history that they forgot about (as is proven by surveys about where people think countries are), which - for the sake of politics - I also think they "should" know about. But people have different ideas on what they need to know, and only keep so much information active in their brains.

Know what shocks me? An awful lot of people don't know where their sacrum is! How can you not know that?! It's rather important, given that we pick up heavy objects not infrequently, it's prone to being tweaked by that activity, and prone to not recovering without some attention to care. But people don't think they need to know about anatomy either. Or scoliosis - we're almost all tested for it in grade school, but people don't know what it is, what it means, or what it looks like, despite the fact it can greatly affect us - painfully - for our lives.

(We can all come up with these examples, I know... Kinda fun too, though... 'cause you learn new things... :) )

I have thoroughly enjoyed following this thread . . . it has given me incentive to be a little more proactive in teaching my kids. My daughter is already reading labels . . . will be a life long habit for her now. . . but my son has his meals set before him. So I decided it was time for a pop quiz (he's nine). . . he knew what french fries were made out of. He knew that most bread is made out of wheat. He didn't know what pasta is made out of - maybe because I've never made pasta from scratch. I know he knows what scoliosis is because we just had a discussion about it last week (In answer to the question, why does the doctor make me touch my toes and looks at my back). I shall put a discussion about his sacrum on the agenda soon . . . :D

So my anecdote . . . it was actually before my daughter's diagnosis . . .

Sitting in chairs in the neighor's drive, watching the hoard of neighborhood kids play, my neighbor asked what was for dinner. I replied that I was probably going to fry some chicken. She was suprised and asked me if I really knew how to fry chicken. I said yes, and asked her how she fried her chicken. She responded that she just buys it at the deli counter. OK, so not everyone has to know how to fry chicken . . . So I was relating this story to someone else and how surprised I was that my neighbor didn't know how to fry chicken only to be told, once again, by the person I was talking to that she didn't know how to fry chicken either. Now I just keep my mouth shut and don't make assumptions that people know the same things as I do. I vowed that my kids will know how to cook and not just heat something up (which is now mandatory for my daughter :) ) Oh, and that first neighbor was the one that suggested "Wonder Bread" when I told her that my daughter could no longer eat wheat bread.

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You bring up a very good point. Those of us who haven't felt well since childhood knew food was the cause, even if we couldn't pinpoint it was gluten at the time. So we probably paid more attention when we were taught about food, and made a point to remember it. While others just filed it away to the dark, dusty corners of their minds. So Tim-in-Va, you were right all along!

I think it is more like the old proverb: "when the student is ready, the teacher will appear". People learn and retain what they think is important and relevant to them at the time, within the scope of their environments. I think as Celiac Disease and other gluten intolerances start to gain prominence through proper diagnosis and greater demand, more people will start to make the connection between wheat, flour and health concerns in the same way that most understand the impacts of fat and cholesterol on cardiovascular disease, because the information is culturally and medically reinforced. We need more physicians who don't diagnose allergy symptoms as lactose intolerance, or readily dismiss chronic GI distress as IBS. That is the real injustice as far as I'm concerned. Maybe when they figure out a way to make money off of Celiacs and gluten intolerances with pharmaceuticals, they will figure out a way to diagnose us more regularly, but I know that is my personal cynicism toward the medical industry.

At any rate, as for the public-at-large, I think for now we are the teachers by default. And as a teacher it is inevitable that some students will be ready, and some not. It's a bummer though when I have to go in and convince my doctor that my health concerns about food intolerances should be taken seriously, and he isn't ready.

I have thoroughly enjoyed following this thread . . . it has given me incentive to be a little more proactive in teaching my kids.

I absolutely love your avatar and personal statement! More cowbell - yeah! :lol:

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Great thread!

I was at a restaurant in NY, explained the allergy/normal line, and was then told that everything on the menu was gluten-free.

me: 'really? everything's gluten-free?'

him: 'yep. it's all safe for you.'

me: 'really? how about that sandwich there... with the bread?'

him: 'um... maybe not that.'

me: 'and how about the wheat pasta in that soup?'

him: 'ummm....' (really awkward now)

me: 'so i know your manager told you that everything was gluten-free, but can you check with the chef about substituing this for...'

hahaha! I love it! It's totally not his fault (manager's fault, all the way), but if there weren't such obvious things on the menu (as warnings), it could have been a BAD visit.

Joel

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It's like that old joke --

What's the difference between a used car salesman and a computer salesman?

A: The used car salesman knows he's lying!

ken

Great thread!

I was at a restaurant in NY, explained the allergy/normal line, and was then told that everything on the menu was gluten-free.

me: 'really? everything's gluten-free?'

him: 'yep. it's all safe for you.'

me: 'really? how about that sandwich there... with the bread?'

him: 'um... maybe not that.'

me: 'and how about the wheat pasta in that soup?'

him: 'ummm....' (really awkward now)

me: 'so i know your manager told you that everything was gluten-free, but can you check with the chef about substituing this for...'

hahaha! I love it! It's totally not his fault (manager's fault, all the way), but if there weren't such obvious things on the menu (as warnings), it could have been a BAD visit.

Joel

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  • Who's Online   14 Members, 1 Anonymous, 968 Guests (See full list)

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics