Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

100% For Non-violent Reactors?

wusidi

By wusidi
in Coping with Celiac Disease

Recommended Posts

wusidi Newbie
wusidi
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

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.

Mountain Mama Rookie
Mountain Mama
Posted

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.

GeoffCJ Enthusiast
GeoffCJ
Posted

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

wusidi Newbie
wusidi
Posted
  • Author

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.

Kyalesyin Apprentice
Kyalesyin
Posted

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.

GeoffCJ Enthusiast
GeoffCJ
Posted
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.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
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. :)

Kyalesyin Apprentice
Kyalesyin
Posted
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.

CarlaB Enthusiast
CarlaB
Posted
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?

Kyalesyin Apprentice
Kyalesyin
Posted
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.

CarlaB Enthusiast
CarlaB
Posted
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.

Kyalesyin Apprentice
Kyalesyin
Posted
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.

Nancym Enthusiast
Nancym
Posted

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

larry mac Enthusiast
larry mac
Posted

Seth,

So what's the story with that user name?

best regards, lm

Ashley Enthusiast
Ashley
Posted

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.

2Boys4Me Enthusiast
2Boys4Me
Posted
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.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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).

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,995
    • Most Online (within 30 mins)
      7,748
    Kellie P.
    Newest Member
    Kellie P.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...