Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

!++!

100% For Non-violent Reactors?

Recommended Posts

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

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

Share this post


Link to post
Share on other sites

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.


~Savoring this new world of dark chocolate~

graves disease 1998

pos blood test sept 2006

pos biopsy oct 2006

gluten-free since oct 2006

Share this post


Link to post
Share on other sites

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


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.


I'm really just here about my wife. Its all her fault!

Share this post


Link to post
Share on other sites
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


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites
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. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
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.


I'm really just here about my wife. Its all her fault!

Share this post


Link to post
Share on other sites
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?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
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.


I'm really just here about my wife. Its all her fault!

Share this post


Link to post
Share on other sites
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.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
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.


I'm really just here about my wife. Its all her fault!

Share this post


Link to post
Share on other sites

Seth,

So what's the story with that user name?

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

Share this post


Link to post
Share on other sites

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.


-Diganosed with Celiac's Disease on April 15, 2005.

"Art washes away from the soul the dust of everyday life"-Picasso

Share this post


Link to post
Share on other sites
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.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

Share this post


Link to post
Share on other sites

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).

Share this post


Link to post
Share on other sites