Jump to content

  • 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

Being Gluten Free

radgirl

Recommended Posts

radgirl Enthusiast
radgirl
Posted

This may seem silly, but I thought I'd throw it out there for discussion. When going gluten-free, is one every TRULY gluten free. I know there are gluten-free products out there, but unless you live in a bubble, isn't there always going to be some level of contamination? Perhaps I am not thinking this through clearly. Thoughts?

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

Some of us that are super sensitive - me, do not eat many processed foods, I am almost grain free except for some rice & corn. I do no eat any packaged gluten-free product - I will get sick everytime.

So yes, I am gluten-free because I make everything I eat - from scratch. For instance I take a can of tomato paste & seson to make my ketchup...

radgirl Enthusiast
radgirl
Posted
  • Author
Some of us that are super sensitive - me, do not eat many processed foods, I am almost grain free except for some rice & corn. I do no eat any packaged gluten-free product - I will get sick everytime.

So yes, I am gluten-free because I make everything I eat - from scratch. For instance I take a can of tomato paste & seson to make my ketchup...

I understand. But even with rice and corn, isn't there even a slight possibility for CC?

Guest j_mommy
Guest j_mommy
Posted

Here are my thoughts..... :D

I do my absolute best to be Gluten free!!! I DO NOt cheat in any way. But if you do not make all of your food from scratch then I don't believe you can be 100% gluten free....you can be 99.99%!LOL But if you eat out, off a gluten-free menu, there is bound to be alittle something even if you don't react to it!

I think that you have to do the best you can, read labels, call companies and when you do go out stress that you can't have wheat rye barely or oats.

Since going gluten-free I have had very few CC issues but I have had a couple.

jerseyangel Proficient
jerseyangel
Posted

I think we all do the best we can, but when dining out or eating processed mainstream brand foods, there's always the chance of cross contamination and getting some gluten slipping in. Even with products made in a gluten-free facility--do they always follow the ingredients every step of the way?

I'm very sensitive, so I don't eat out, and eat probably 95% whole foods. I do use a few processed foods that I trust because I've not had a reaction to them.

For me, the goal is to avoid gluten as much as I possibly can, and hopefully the traces that I can't control won't be a factor.

elye Community Regular
elye
Posted

Ditto with me...and I'm somewhat at a disadvantage, because my reactions to gluten are quite subtle, so I'm sure I've been cc'd and not been aware of it. One advantage of being ultra-sensitive to gluten--you know when you've slipped up!

tiffjake Enthusiast
tiffjake
Posted

I am sure that I am not 100% gluten-free because I eat gluten-free things that are "made in a facility that also processes" bla bla bla. I am careful, but I DO eat out. I don't eat gluten on purpose, but I am sure some gets in there. I try to put it in perspective- I am exposed to ozone, toxic fumes, sick people at work/school/shopping, enclosed recycled air on planes, and on and on and on....so I do no freak out about being 100% totally gluten free. Don't get me wrong, I do not eat it on purpose, but I also do not make my own ketchup (wow!! thats amazing gfpaperdoll!!!!) Just MY opinion....

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

Celiac.com Sponsor (A8-M):


Guest Doll
Guest Doll
Posted

I *personally* feel that you can never be 100% gluten-free unless you DO live in a bubble. Perhaps 99.5% if you are VERY careful. :P This is why I can't wait for Alba's AT-1001 in trials now. This will close the leaky gut (or at least help the leaky gut), thus reducing the risk of even slight CC with gluten. For people like me (very sensitive) it will help a lot.

I personally think we need a cure for Celiac. The gluten-free diet is NOT a cure. It doesn't close the leaky gut, change our genetics, or fix our abnormal immune response to gluten. It is only a treatment, much how like insulin is not a cure for diabetes. The gluten-free diet is not good enough for me. A cure for me involves closing my leaky gut and/or fixing my abnormal immune response to gluten. :)

*Perhaps* AT-1001 will also help those with refractory Celiac, who may be reacting to minuscule amounts of gluten that are impossible to completely eradicate. Note that up to 40% (perhaps more) of Celiacs still have some degree of intestinal damage on the gluten-free diet. This *could* be due to trace amounts of gluten.

It *IS* possible for most people however to eliminate enough gluten (what would appear to be 100%) to cause their symptoms to go into remission.

Not eating out at all and having a 100% gluten-free kitchen helps, as well as eating unprocessed foods. Just remember, if you use tomato paste from a can, one of those tomatoes could have been handled by a glove or hand with gluten traces, or there could be a trace of gluten in the line made to process the paste. ;P You just never know!

I try to eat very little processed stuff like fish, veggies, salad, brown rice, etc. but there is no way to make sure this is gluten-free 100%.

radgirl Enthusiast
radgirl
Posted
  • Author

Thanks everyone for your posts. I can see where many of you are coming from. For me, it's almost a quality of life issue. Even if you do make everything 100% scratch in your home, IMO, there seems to be no guarantees of gluten-free. Heck, for all we know, there could be some level of gluten floating through the air. Yes, all we can do is do our best to remove as much of it as possible, but I also don't want to be held prisoner in my house or in my life because I can't go out to eat, I can't do this, I can't do that. As it is, I live a good portion of my life like that and it's very stifling and confining. IMO, there is only so much you can do to remain gluten-free, but inevitably, it will get in your system some how and it's just a matter of doing the best you can with what you have. :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    5. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748
    jimiiiii
    Newest Member
    jimiiiii
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.