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Haylsinator

Ok, Not To Be A Total Skeptic...

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This probably explains why I sometimes get sick from eating in restaurants when I'm assured the food is safe. I can order the same things in the same restaurant four times in a row and I can almost guarantee that on one of those occasions I'll be sick. It's always a mystery and I usually blame it on a microscopic crumb in a salad or a careless waitress. I'm sure few restaurants keep separate utensils and pans for their gluten-free requests. sad.gif

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This probably explains why I sometimes get sick from eating in restaurants when I'm assured the food is safe. I can order the same things in the same restaurant four times in a row and I can almost guarantee that on one of those occasions I'll be sick. It's always a mystery and I usually blame it on a microscopic crumb in a salad or a careless waitress. I'm sure few restaurants keep separate utensils and pans for their gluten-free requests. sad.gif

Interesting point! I think this is also why the owner of the completely gluten free restaurant/bakery near us (in upstate NY) INSISTS that no one bring ANYTHING (food, drink) into the place to avoid CC. Deliveries to her store are brought around back where the boxes are wiped down before they are brought in. Employees are educated on gluten and celiac. Extreme? Not at all! I think it's awesome!! It's the ONLY place I KNOW I can eat safely. In fact, the first time I went there for lunch, post DX, I cried because I KNEW I could eat anything off the menu and not be sick afterward. It is my "safe haven".

We need MORE places like this ! :)

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I was told to replace my colander strainer, toaster, cutting boards and anything wooden. I'm a single mom, so I replaced what I used the most first. Slowly I have replaced pots, pan and dishes for me. They aren't the high quality I once had, but they get the job done. I was in so much pain for so long, I was willing to try everything.

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[quote name='chamomilelover' timestamp='1304456046' post='69664. Could the dressing be an issue? I'm fine with udi's (have it all the time, and soy is fine too).

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Interesting point! I think this is also why the owner of the completely gluten free restaurant/bakery near us (in upstate NY) INSISTS that no one bring ANYTHING (food, drink) into the place to avoid CC. Deliveries to her store are brought around back where the boxes are wiped down before they are brought in. Employees are educated on gluten and celiac. Extreme? Not at all! I think it's awesome!! It's the ONLY place I KNOW I can eat safely. In fact, the first time I went there for lunch, post DX, I cried because I KNEW I could eat anything off the menu and not be sick afterward. It is my "safe haven".

We need MORE places like this ! :)

Oooh! Where in upstate NY? I get the feeling you're more toward the Saratoga or Albany area? I'm in Rochester and it seems we call ourselves upstate and everyone else outside of NYC calls us Western NY :lol: I'd love to visit this resturant though. Thanks sounds amazing! Is the food yummy?

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Oooh! Where in upstate NY? I get the feeling you're more toward the Saratoga or Albany area? I'm in Rochester and it seems we call ourselves upstate and everyone else outside of NYC calls us Western NY :lol: I'd love to visit this resturant though. Thanks sounds amazing! Is the food yummy?

I'm close to the Rochester area and we had a great and safe meal at Outback last week. I am always leary of restaraunts but was very pleased. They even asked if it was okay to bring regular bread for the gluten eater at the table. I have also had good luck with PF Changs at Eastview, there are also two other restaurants in eastview that do gluten free but I haven't tried them, and also Halsey's in Geneva (very upscale and pricey though and with a limited menu but wonderful gluten-free bread).

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i went to PF Changs, ordered nothing but steamed chicken and spininch, with no salt, no nothing. just 2 ingrediants. i was really emphatic with the server that i was really sensative to gluten, no sauce, no nothing, and i still got severely glutened.

you explain it to me, if it's not CC??

that was my last experience at a resturant, and they are supposed to cater to gluten free people, too.

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I've always had fantastic luck at PF Changs. I adore their food. I'm sorry you didn't have a good experience, rdunbar :(

I haven't been to the Bonefish Grill at Eastview since I just started to enjoy seafood. I'm not sure I'm aware of the other one. Any idea what it is?

I'll have to look into the Geneva restaurant. Maybe I'll make my hubby take me their for our anniversary in September :D Thanks for the recommendations! If you haven't tried it, The Distillery has my faovirte gluten-free pizza to date.

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Oooh! Where in upstate NY? I get the feeling you're more toward the Saratoga or Albany area? I'm in Rochester and it seems we call ourselves upstate and everyone else outside of NYC calls us Western NY :lol: I'd love to visit this resturant though. Thanks sounds amazing! Is the food yummy?

(chuckling) yeah, anyone not in NYC or Long Island is "upstate" I guess:lol: ...Well, you are "western NY to me" :lol: and I am in "Eastern NY" near Vermont. Yes, about 1/2 hour from Saratoga!

The place is called Sherry Lynn's in Latham, NY. Food is GREAT! And she is a wealth of information and encouragement.(yup, she is a celiac who had a struggle to get diagnosed, too--so she "gets it") Her husband is very knowledgeable and helpful, too. The chef makes sure I get no dairy or soy in my food either. I go there a few times a week now and love it. They have gluten-free deli and other food items.It's near my PT and it is my "reward" after my grueling sessions. It's a 40 minute drive to have lunch, but I don't care! Delicious bakery items...Yum Yum

The irony of all this? She originally opened her place in 2007 right near me. I saw her sign go up and it said "Sherry Lynn's Gluten Free " and I said to hubby.."what's gluten and why do we need to be free from it?" We laughed....little did I know...right after that, I started going downhill and my battle for diagnosis began....weird huh?? :blink:

Anyway, if you come this way...go there. Tell me you're coming and I'll meet you! ;)

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I've always had fantastic luck at PF Changs. I adore their food. I'm sorry you didn't have a good experience, rdunbar :(

I haven't been to the Bonefish Grill at Eastview since I just started to enjoy seafood. I'm not sure I'm aware of the other one. Any idea what it is?

I'll have to look into the Geneva restaurant. Maybe I'll make my hubby take me their for our anniversary in September :D Thanks for the recommendations! If you haven't tried it, The Distillery has my faovirte gluten-free pizza to date.

thanks, it was a while ago. i had eaten the same thing at several other PF Changs in the past with no problem.

at this point, i just try to look at it from a risk/reward perspective; i know i'm capable of bringing my own food with, so i don't have to eat out, so the reward is small, and the risk is great, even if it's not likely, getting glutened is too big a price to pay. i've done the research, and know that the inflammation can linger up to 6 months!!

i'm still healing, and don't want to be moving backwards!!

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I've always had fantastic luck at PF Changs. I adore their food. I'm sorry you didn't have a good experience, rdunbar :(

I haven't been to the Bonefish Grill at Eastview since I just started to enjoy seafood. I'm not sure I'm aware of the other one. Any idea what it is?

I'll have to look into the Geneva restaurant. Maybe I'll make my hubby take me their for our anniversary in September :D Thanks for the recommendations! If you haven't tried it, The Distillery has my faovirte gluten-free pizza to date.

The other one is Biaggis, or spelled something like that. It is an italian restaurant so I would ask a whole lot of questions before I went, but that is just me. There is also another real upscale place in Seneca Falls called the Hotel Clarence. It is the old Gould Hotel. I talked at length with someone there but my son wanted to go to Outback. I haven't gone there myself but they sounded knowledgeable. They have a website with some great pictures. That might also be someplace for a romantic dinner and the rooms look great if you want to make a weekend of it and tour wineries and such also. They even allow pets and have a 'pet sitting service' which I thought was great.

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The other one is Biaggis, or spelled something like that. It is an italian restaurant so I would ask a whole lot of questions before I went, but that is just me. There is also another real upscale place in Seneca Falls called the Hotel Clarence. It is the old Gould Hotel. I talked at length with someone there but my son wanted to go to Outback. I haven't gone there myself but they sounded knowledgeable. They have a website with some great pictures. That might also be someplace for a romantic dinner and the rooms look great if you want to make a weekend of it and tour wineries and such also. They even allow pets and have a 'pet sitting service' which I thought was great.

Wow--you guys have LOTS of options out there!!...maybe hubby and I should take a weekend in "Upstate Western NY" this Fall .. :D

Okay, fellow soy-avoiders...what reliable dish CAN I have at PF Changs?--there is one in the area and when I am feeling ready, I'll try it!

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Wow--you guys have LOTS of options out there!!...maybe hubby and I should take a weekend in "Upstate Western NY" this Fall .. :D

Okay, fellow soy-avoiders...what reliable dish CAN I have at PF Changs?--there is one in the area and when I am feeling ready, I'll try it!

If you do make sure you let me know so we can have a visit in person. There are lots of great places to stay in all kinds of price ranges and we are 'wine country' with a lot of wineries and beautiful lakes and gorges. Real nice place to vacation.

I think PF Changs may have an on line menu but if they don't you should have at least some choices when you get there.

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Being a biochemist (Masters in biochemistry), I also think this is a very controversial issue. The only thing one needs to do to make gluten ineffective is to denature it and regular cooking does not do this but there are other ways to denature proteins. Quite frankly I would be very shocked to hear that chemists do not know the temperature at which it dentures. Cereal chemists especially need to know that number. It would also stand to reason that if someone had a reaction to the minuscule amount that would be available from CC coming after strong cleaning, a major introduction from an oops should be very dangerous. I do get that CC in a kitchen that cooks gluten, ie restaurant, could be an issue.

A good test would be to have someone make something with a brand new spatula that they recently used for something wheat and then washed in their dishwater. Then cook something that is definitely nonreactive without the other person knowing.

Again, not saying it is not possible but it seems highly suspect and possibly something else, ie a corn sensitivity, milk, etc. Or just another case of who knows what got me that time.

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If you do make sure you let me know so we can have a visit in person. There are lots of great places to stay in all kinds of price ranges and we are 'wine country' with a lot of wineries and beautiful lakes and gorges. Real nice place to vacation.

I think PF Changs may have an on line menu but if they don't you should have at least some choices when you get there.

If we do come your way, you KNOW I will tell you! I would love to meet you--after all the chats we have had! ;)

I'll check out their menu! thanks! :)

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Being a biochemist (Masters in biochemistry), I also think this is a very controversial issue. The only thing one needs to do to make gluten ineffective is to denature it and regular cooking does not do this but there are other ways to denature proteins. Quite frankly I would be very shocked to hear that chemists do not know the temperature at which it dentures.

Slightly off thread, but gluten doesn't denature until a bit over 600F, temperature wise. And it's a very difficult protein to denature sufficiently via other mechanisms.

The reason that it's not *quite* as simple as "only thing one needs to do to make gluten ineffective" is that it's not the protein as a whole that celiacs respond to. It's a particular 33-mer (which happens to be usually rich in one of the amino acids, but I forget which at the moment) that is, itself VERY difficult to break apart.

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Being a biochemist (Masters in biochemistry), I also think this is a very controversial issue. The only thing one needs to do to make gluten ineffective is to denature it and regular cooking does not do this but there are other ways to denature proteins. Quite frankly I would be very shocked to hear that chemists do not know the temperature at which it dentures. Cereal chemists especially need to know that number. It would also stand to reason that if someone had a reaction to the minuscule amount that would be available from CC coming after strong cleaning, a major introduction from an oops should be very dangerous. I do get that CC in a kitchen that cooks gluten, ie restaurant, could be an issue.

A good test would be to have someone make something with a brand new spatula that they recently used for something wheat and then washed in their dishwater. Then cook something that is definitely nonreactive without the other person knowing.

Again, not saying it is not possible but it seems highly suspect and possibly something else, ie a corn sensitivity, milk, etc. Or just another case of who knows what got me that time.

a study showed that 1/60th a teaspoon of wheat flour a day was enough to prevent intestinal healing in celiacs.

that makes the amount of gluten in 1/60th a teaspoon super tiny, as there are 100s of protiens in wheat besides gluten.

this is the good part: they havent done studies with even smaller amounts, so it is possible that it's ditto for 1/2 that amount or less.

considering this, is it so strange to think you could get it off a spatula, or cutting board, or a cooks hand who just ate a sandwich, and didnt wash??

is it??

i thought i was gluten free for almost 3 years, and got sicker and sicker, kept losing weight. not until i stopped eating in resturants and eating processed 'gluten free' products that may be slightly contaminated did i begin to show improvement.

my experince echoes what the study proved.

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a study showed that 1/60th a teaspoon of wheat flour a day was enough to prevent intestinal healing in celiacs.

that makes the amount of gluten in 1/60th a teaspoon is super tiny, as there are 100s of protiens in wheat besides gluten.

this is the good part: they havent done studies with even smaller amounts, so it is possible that it's ditto for 1/2 that amount or less.

considering this, is it so strange to think you could get it off a spatula, or cutting board, or a cooks hand who just ate a sandwich, and didnt wash??

is it??

My concern was about washed items, ie dishwashered items. If gluten is still that present after washing as to cause issues, then family members simply eating gluten items in the house would seem to be detrimental as gluten would be all over items over time. If this is the case, then all families with a celiac person should totally ban gluten in its entirety. Then how do you ever go to any restaurant as it would be on items.

It would also mean that companies that claim to wash machines down between food items is meaningless. Again I am not saying I do not think it is possible, I am just saying that the picture quickly gets much bigger.

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My concern was about washed items, ie dishwashered items. If gluten is still that present after washing as to cause issues, then family members simply eating gluten items in the house would seem to be detrimental as gluten would be all over items over time. If this is the case, then all families with a celiac person should totally ban gluten in its entirety. Then how do you ever go to any restaurant as it would be on items.

It would also mean that companies that claim to wash machines down between food items is meaningless. Again I am not saying I do not think it is possible, I am just saying that the picture quickly gets much bigger.

I think the issue is not with smooth surface or fairly new items that are washed (such as stainless steel). The issue is with pourous items such as wooden spoons and wooden cutting boards OR items that can get scratches with use Or items with many tiny holes and crevices (strainers, mesh sifters, etc). When you consider that it requires a temperature of 600 degrees for an extended period of time to destroy gluten, how could you ever know that a dishwasher removed that gltuen from a surface that is pourous (wooden spoons) or had scratches (old plastic utensils)? I'm pretty sure my dishwasher does not heat things to 600 degrees or else my plastic pancake flippers would be melted. Nor does it even blast water hard enough to get food particle out of every tiny hole, which is why I have to rinse some things prior to putting it the dishwasher.

Also many of us do have to have our households go entirely gluten free in order to start to feel better and many of us cannot eat so-called gluten-free products for exactly the reason you mentioned--cc due to poor cleaning in between batches of gluten free and gltuen-containing products. There is currently no industry or legal standard in the US for what can be called gluten free, so companies could very well make things on the same lines without cleaning them at all. Most probably won't do that because they fear lawsuits, but there is nothing stopping them from doing it. Even if every company was meticulous about cleaning, there is no way to test for less than 5 PPM of gluten so there is no way to know if those products are 100% gluten-free.

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Also many of us do have to have our households go entirely gluten free in order to start to feel better and many of us cannot eat so-called gluten-free products for exactly the reason you mentioned--cc due to poor cleaning in between batches of gluten free and gltuen-containing products. There is currently no industry or legal standard in the US for what can be called gluten free, so companies could very well make things on the same lines without cleaning them at all. Most probably won't do that because they fear lawsuits, but there is nothing stopping them from doing it. Even if every company was meticulous about cleaning, there is no way to test for less than 5 PPM of gluten so there is no way to know if those products are 100% gluten-free.

And that is EXACTLY the gluten landmine we walk whenever we trust a gluten-free label or a gluten-free menu. Unless a food is INHERENTLY gluten-free i.e. a plain fresh carrot, a plain chicken breast...you never know. I suspect there is no such thing as 100% gluten-free. Unless you live in a bubble. :unsure:

We can only do the best we can to safeguard ourselves. And not be paranoid in the process :D

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a study showed that 1/60th a teaspoon of wheat flour a day was enough to prevent intestinal healing in celiacs.

that makes the amount of gluten in 1/60th a teaspoon super tiny, as there are 100s of protiens in wheat besides gluten.

this is the good part: they havent done studies with even smaller amounts, so it is possible that it's ditto for 1/2 that amount or less.

considering this, is it so strange to think you could get it off a spatula, or cutting board, or a cooks hand who just ate a sandwich, and didnt wash??

is it??

i thought i was gluten free for almost 3 years, and got sicker and sicker, kept losing weight. not until i stopped eating in resturants and eating processed 'gluten free' products that may be slightly contaminated did i begin to show improvement.

my experince echoes what the study proved.

Is this for real? 1/60th a teaspoon of wheat flour had a traceable reaction? That's crazy! Do you happen to know where this study was stated? I'd love to read about it.

I'm wondering if I should go completely unprocessed. I'll have to review what I eat and see if I can make the modifications.

Again, thank you for all of the responses. It's been an extremely interesting and educational read!

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Is this for real? 1/60th a teaspoon of wheat flour had a traceable reaction? That's crazy! Do you happen to know where this study was stated? I'd love to read about it.

I'm wondering if I should go completely unprocessed. I'll have to review what I eat and see if I can make the modifications.

Again, thank you for all of the responses. It's been an extremely interesting and educational read!

I am thinking the same way! It seems whenever I try a "gluten-free packaged product", I feel sick. If I stay "whole foods", or make my own bread, I keep making progress.

Hope you figure out what's getting to you. I found my husband going gluten-free with me (entirely on his own) so no gluten filled bread or other food was coming in the house... and cleaning out all of our cabinets of wheat flours, wooden utensils, cutting boards and rolling pins was key. I started to get better. He has a beard and we joked about crumbs in there as well. He even gave up his beloved beer. (I know, he's a doll) For me, CC was the stumbling block, no matter how careful I was.

This was a very interesting post---thanks for asking about it! :)

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Is this for real? 1/60th a teaspoon of wheat flour had a traceable reaction? That's crazy! Do you happen to know where this study was stated? I'd love to read about it.

Yes, I've read that, too, but I couldn't tell you where.

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M If gluten is still that present after washing as to cause issues, then family members simply eating gluten items in the house would seem to be detrimental as gluten would be all over items over time. If this is the case, then all families with a celiac person should totally ban gluten in its entirety. Then how do you ever go to any restaurant as it would be on items.

It would also mean that companies that claim to wash machines down between food items is meaningless.

I know it was said before, but...yeah, this is pretty much absolutely true, best we can tell.

- studies on how well cleaning works on machines in the food industry are not done for every type of protein, but rather for a generic 'best guess.' The only study I've found that was done to determine how well cleaning protocols work on our food processing machinery for specific proteins only looked at a few, and discovered that the effectiveness differs by protein. The difference was 15% or less of the protein remaining, as I recall. But I have found no studies on how effective cleaning protocols are on gluten, specifically.

- On a personal level, restaurants and shared households are more of a risk, most definitely. My own household is gluten free completely, down to our soaps, but we have some differing levels of sensitivity. I cannot use any pans, pots, or even plates that the rest of my family uses without scouring them out again, AFTER washing in the dishwasher, or about half the time I get sick off of them. I cannot eat out at restaurants without getting quite sick. My own symptoms are not gastro-intestinal but rather neurological, so they are fairly specific and easy to differentiate from my allergies as a result.

- I don't believe my own difficulties are an isolated incident. A study was published in The American Journal of Gastroenterology last year on how well celiacs are healing. Out of 241 adults, 57% of those who had strict adherence to their diets were still showing intestinal tissue damage after 5 years. (an article re: the study can be found here: http://www.healthnowmedical.com/blog/2011/04/20/why-do-some-with-celiac-disease-never-heal/ )

Personally, from my own experience, one hypothesis on why people are not healing may be that our 'gluten free' diet is not as gluten free as many of us may need it to be. Symptom free may not be 'damage free,' as it were. I do not know if this is the case, obviously, but most doctors are NOT biochemists or very knowledgeable about the food supply, and so do not realize how easily and frequently we can get gluten even on a very strict gluten free diet. As a result, a possible solution is almost never to try an even MORE gluten free diet than one has been previously on.

shauna

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I have actually gotten the sickest from some gluten-free foods, ie Lara bars. Go figure.

I think the reason we all have differing views of CC is that some of the CC issues are other reactions, ie food allergies, sensitivities, digestive enzymes, etc. There really is no way to know for sure if the CC feeling is gluten or some other item which makes it very difficult to trace.

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    Thank you so much! and yes, I am aware of other allergies. I have leaky gut as well and have a food allergy to potatoes and corn as well and my mother eats those too. So very stressed out. I went downstairs and found a mini fridge and im going to start using that because like you said, handles, faucets, etc are too much. the stress does not help the body either, ive been getting sick three times a week. its very hard.  I am glad there are people who understand! Sounds like you were concerned too
    The cheese and avocado are fine, the gluten was not aerosolized anything like that. NOW if your allergic to wheat there could be some issues being around it like that (some severe cases of peanut allergies can go off if it is in the room) but you would be anaphylactic.  I get the paranoia, it gets to the point of being almost PTSD. You fear to get sick so bad because the weirdest things have bedridden you. I got glutened touching gluten residue on facets, fridge door handles, etc in my old
Alaskaguy, Here is the research you are looking for they are entitled "Maize prolamins resistant to peptic-tryptic digestion maintain immune-recognition by IgA from some celiac disease patients." and "Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients." respectively. https://www.ncbi.nlm.nih.gov/pubmed/22298027 https://www.ncbi.nlm.nih.gov/pubmed/24152750 It is like Oats ...Corn can bother a subset of celiac's. ...reintroducing
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