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100% For Non-violent Reactors?
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18 posts in this topic

hello, brand new here, spent the last hour reading 5 pages on this forum and here i am posting.

it is my girlfriend who has gluten issues, she has a quite rare autoimmune desease that affects her lungs and has learned that gluten can trigger problems. she has thus attempted a gluten free diet for 2 years (i say "attempted" because after reading this forum, i see that "gluten free" is a clinical term here). her level of gluten free over these 2 years has given her a much better energy and that was the biggest symptom, tired and getting colds too often, those symptoms have diminished but one could say they still linger but also could be seen now as symptoms of opening a new business and not so healthy eating (non gluten related).

anyways, i got on here today to look into soy sauce and found it does contain gluten, but then wondered how much gluten can cause ill affects and found on here that a test showed .1 grams caused reactions, which is 1/48 the amount in a standard slice of bread, but then i wonder how much gluten is in a table spoon of soy sauce (i found no answer) and since my girl friend has no violent reactions, i wonder if an occassional chinese dinner would affect her. i'm guessing and fearing that most will respond with "don't do it, that is whats safest" but to state again, she does not have violent reactions and only seems to have ill affects after being glutened a few times over a week and her symptoms are; strange feelings in her lungs and intestines.

i know there are different levels of gluten sensitivity and i am wondering about how some people do eating 98% gluten free, maybe eating soy sauce once a week and not worrying about CC and other micro amounts of gluten.

i hope i am not too off base, as i would love some idealogical help

thanx

seth

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I am 100% gluten free. Except when I get a cross contamination issue, which is maybe 3 times a year. There is gluten free soy sauce. And if you go to PF Changs, they have a gluten free menu with gluten free soy sauce.

Congratulations to your girlfriend for having such a caring boyfriend.

Welcome to the forum and others will post with more details.

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If a person has celiac disease there is NO safe level of gluten. Ingesting tiny ammounts of gluten once or twice a month can keep a celiac from healing, and keep their cancer rick up, their vit levels off, increase the likelyhood of osteoperosis etc etc. Sounds like your girlfriend has not been diagnosed with celiac though. And just fyi, chinese foods are often battered in wheat flour and fried, and most of their noodles are wheat based. Alot of egg rolls use wheat wrappers.

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I feel like I say this a lot, but if you like Chinese food, try vietnamese food. I prefered it even before going gluten-free, but especially now, since it has many gluten-free choices.

Geoff

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thank you already for some quick replies already

i should not of generalized and said "chinese food" as we mostly eat vietnamese or korean but they all pose the same issue of using sauces that are soy sauce based which mostly have wheat as an ingredient.

i know of the pf changs option but that is far from our eating circle, aswell we have cleared far from wheat noodles and battered items, even though some rice noodle and rice papers can have wheat in them as well. we frequent an asian market and its quite surprising how much wheat/gluten is in many of the items at the store.

i believe she had one of the blood test come back showing signs of celiac. far from conclusive and far from my expertise on the illness.

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Sorry, but as the partner of a celiac, I'm saying 'don't do it.'

It takes less than a gram to cause a reaction. My wife gets a fever from much, much less than that. My wife got a fever from a smartie. Just. One. Smartie.

The risks are not worth it. Cancer, osteoperosis, continual malnourishment... my wife was bordering on scurvy before we were diagnosed! Don't take the risk.

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i should not of generalized and said "chinese food" as we mostly eat vietnamese or korean but they all pose the same issue of using sauces that are soy sauce based which mostly have wheat as an ingredient.

If it's authentic Vietnamese, it will use Fish Sauce, not Soy Sauce. You still need to be careful about the meats, but most are OK. fish Sauce does not contain wheat.

If there is a lot of Soy Sauce, then it's not proper Vietnamese food!

Geoff

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My wife got a fever from a smartie. Just. One. Smartie.

I just wanted to note that they are in the UK, in the US Smarties are a whole different candy and do not have gluten.

PF Changs has a gluten-free menu, so it's an easy place to eat. I can't tell from your response if you knew that. :)

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I just wanted to note that they are in the UK, in the US Smarties are a whole different candy and do not have gluten.

We were in canada at the time. The packet very clearly listed 'wheat flour' on the ingreedients. I was dumb enough not to look until after she'd had one. Minor fever, and I'm in more trouble with myself than I am with her, but its still a scary thing.

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We were in canada at the time. The packet very clearly listed 'wheat flour' on the ingreedients. I was dumb enough not to look until after she'd had one. Minor fever, and I'm in more trouble with myself than I am with her, but its still a scary thing.

They're a different candy in Canada than the US. :) In the US they're like a Sweet Tart ... a little fruity, sour candy.

I hear that in Canada they are some kind of chocolate candy?

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They're a different candy in Canada than the US. :) In the US they're like a Sweet Tart ... a little fruity, sour candy.

I hear that in Canada they are some kind of chocolate candy?

Aye- chocolate with a sugar shell. We just grabbed them at a subway station because we were hungry...

Luckily, the fever only lasted an hour. I was kicking myself.

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Aye- chocolate with a sugar shell. We just grabbed them at a subway station because we were hungry...

Luckily, the fever only lasted an hour. I was kicking myself.

They sound really good, actually! Too bad that's the candy you selected, I'd bet almost all the others available were gluten-free. :( And when you were travelling, no less.

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They sound really good, actually! Too bad that's the candy you selected, I'd bet almost all the others available were gluten-free. :( And when you were travelling, no less.

They are pretty good. I shipped a boxload of our UK version to a friend of mine when she got diagnosed with lukemia. Most of the other stuff we ate, like the peanut butter cups, we checked the label, but we have smarties here all the time...

Thats gonna be the biggest thing if/when we emigrate. Re-checking stuff we take for granted here.

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There are dining cards available which are hugely helpful. I believe they're Triumph Dining cards and you can buy them for many cuisines. I ordered mine on celiac.com

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Seth,

So what's the story with that user name?

best regards, lm

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Welcome Seth!

I hope you and girlfriend get a lot of good help from the website! I would strongly discourage eating resturant Chinese food. If you choose to (which I do too, the chicken fried rice becomes so tempting.) make sure to stress not to cook any of her food with soy sauce. A good alternative soy sauce is Tamari. Love the stuff, you can get Wild Oats I know for sure. Probably at all the other health food stores, too.

The smallest amount of gluten can do damage. I have extremely sereve reactions so I know if I even got just the tiny bit of gluten in me. I think it's a lot harder to figure out whether things have gluten if you really don't react. Just be careful. It never hurts to call ahead to the resturant or the company of the product to ask question.

-Ash

PS: To anyone, does PF Changs have a website? I never heard of one being in Tennessee and I'd like to see if I can find one here.

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They sound really good, actually! Too bad that's the candy you selected, I'd bet almost all the others available were gluten-free. :( And when you were travelling, no less.

They're like M&Ms only not as good. My husband and I agree to disagree on Smarties vs. M&Ms. I think M&Ms are the superior candy and he thinks Smarties are. He'll go for peanut M&Ms, though.

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Hi, Seth! Welcome aboard!

I just wanted to chime in and say that, first of all, I don't get violent reactions, either, but I am gluten-free because the risk of other autoimmune disorders increases exponentially with continued gluten consumption. It's not worth the risk.

And secondly, if ONE part of her blood test came back positive for gluten/celiac, then I'd say she has celiac, especially considering she's been gluten-lite for 2 years--that will practically guarantee her tests would all come back negative.

The more completely gluten-free she can be, the better she'll feel and the better her health will be in the long run.

If you must eat out, bring dining cards with you (they're little cards that explain celiac and what foods pose a risk, available in every language you can think of,so you can give it to the chef).

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
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    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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