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

What Is The Longest You've Gone Without Gettig Glutened?

livelifelarge24

Recommended Posts

livelifelarge24 Enthusiast
livelifelarge24
Posted

Now that I'm realizing just how sensitive I am, it's starting to scare me. I really thought that cutig gluten out of my diet was the cure to everything. But it seems every time I turn around I find something new to wary out for- restaurants, roommates, dog food and treats, etc. I am realizing how obsessively clean and careful I have to be but I'm curious if I'm just ALWAYS going to be getting glutened. What is the longest you've ver gone without getting glutened?

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

Celiac.com Sponsor (A8-M):


gluten free overseas Apprentice
gluten free overseas
Posted

In the beginning, it happened a lot... the packaged hamburger had fillers, my hand cream had wheat germ oil and so on. After a while, it happens fewer and fewer times. One thing is that I got glutened a lot when I had a mixed kitchen. I'd accidentally put the wrong syrup on my pancake or breathe in some wheat flour by accident. I don't get glutened much now that the entire household is gluten free. If I get glutened, it's because I ate at a restaurant and tried something new and thought it was safe and it wasn't. That's a BAD glutening--like, I can't get out of bed for 6 hours, and then the symptoms lingered for forever. After that happened a couple of times, I really don't eat out a whole lot.

Keep reading labels. Eventually, I realized that high fructose corn syrup made me sick. You might find out that something else bothers you too.

livelifelarge24 Enthusiast
livelifelarge24
Posted
  • Author

I'm dealing with the flour in the kitchen thing. I felt amazing for two months then got a new roommate that is a chef and bakes bread from scratch at least twice a week- flour all over the kitchen. It took four weeks of hell to figure out that's what has been making me sick. Even though I havebit pinpointed I still feel incredibly discouraged, like this is going to ve much harder than I thought.

desert rose Newbie
desert rose
Posted

I'm dealing with the flour in the kitchen thing. I felt amazing for two months then got a new roommate that is a chef and bakes bread from scratch at least twice a week- flour all over the kitchen. It took four weeks of hell to figure out that's what has been making me sick. Even though I havebit pinpointed I still feel incredibly discouraged, like this is going to ve much harder than I thought.

I have found that being able to control the environment is the only way to be completely safe. Even eating out at friends places that know that I am gluten intolerant has had dire consenquences. Dont give up hope. Remember that it is a complete lifestyle change and it really does get easier.

Jinkomedy Newbie
Jinkomedy
Posted

i know how you feel, in the beggining i was super happy that i found something that might caused my major weight LOSS. and other symptoms. its also getting to me. its real hard when everything contains gluten(mostly the good stuff).

tarnalberry Community Regular
tarnalberry
Posted

Now that I'm realizing just how sensitive I am, it's starting to scare me. I really thought that cutig gluten out of my diet was the cure to everything. But it seems every time I turn around I find something new to wary out for- restaurants, roommates, dog food and treats, etc. I am realizing how obsessively clean and careful I have to be but I'm curious if I'm just ALWAYS going to be getting glutened. What is the longest you've ver gone without getting glutened?

I don't remember the last time I got glutened... probably more than two years ago. It's possible that I might not notice very slight contamination, but I DO get sick from cross-contamination, so it's not just that I'm a silent celiac. It's that we don't generally eat at restaurants, and when we do, it's ones that I've been at before and am very careful with menu selections and are offering naturally gluten free food (thai and sushi are the most common things we do). We don't have roommates, my daughter doesn't get gluten-y food if I'm around, our dog is also grain free (better for them anyway), the house is mostly gluten free and gluten doesn't get cooked in the house, and I generally bring my own food with me if we're eating a friends house (though there are two people I feel comfortable with cooking for me, my mother in law and one friend).

But I've been doing this for eight years (and one of those years, I was ridiculously, extra careful because I was pregnant). The first year, it was probably every other month or so (and my reactions tend to take two weeks to work their way through), then two or three times a year for a while.

It gets better, but it's a change in lifestyle that you have to really adapt to and THEN become habituated to as well. You'll get there! Just keep working at it!

love2travel Mentor
love2travel
Posted

I have been extremely diligent for six months since my celiac diagnosis and got glutened accidentally once early on to my knowledge (a company had briefly changed its labeling). But our household went gluten-free immediately, I NEVER eat at fast-food places or chains and have also managed not to eat at others' homes or functions (yet). :) We have no children (now THAT would be hard) and my husband is as diligent as I am (although he does have gluten outside our house).

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

Celiac.com Sponsor (A8-M):


Jenniferxgfx Contributor
Jenniferxgfx
Posted

Ugh, it's only been a couple months for me, but I can't go more than 5 days so far. :( often the reaction is just a tingling hand (and a bit of asthma several hours later), but if I have a couple tingly hand exposures in a day period, I wind up with more severe symptoms. It's been really hard to accept. And I wanted to live in a bubble. I still kind of do.

Controlling my environment has helped a LOT as someone else said. But honestly it IS hard to be so vigilant. And it's so frustrating that I sometimes don't get a violent intestinal reaction for a day or two afterwards so it's obviously too late by then and I have to just ride it out. At least with my asthma symptoms I can use my inhaler. Nothing I can do for a glutening, except some lousy acting meds.

It IS getting easier though. Its starting to become second nature, as folks here assured me it would.

ravenwoodglass Mentor
ravenwoodglass
Posted

It had been about a year for me until I took a position where I was doing art projects with kids. A lot of the stuff was gluten filled and I thought I would be safe by doing what I do at home when working with gluten containing glues and such like always wearing gloves etc. I was wrong. As soon as I got over that I then made a big mistake week before last and bought an unfamiliar brand of chips that LOOKED safe by the label. They weren't. Spent a night in the bathroom, not fun for the new dog I had just adopted or myself. Took 3 days to get over the GI bleed and I certainly won't make that mistake again.

zus888 Contributor
zus888
Posted

I don't know if I'm just not that sensitive or I've been really good at this gluten-free thing, but I was glutened once 3 weeks after I started the diet and haven't been glutened since. I'm approaching 6 months of gluten-free living (Sept. 9th).

We generally don't eat out, but when I do, I'm very clear about my needs and typically go to restaurants that have a good record at accommodating gluten-free diets. I've been pretty lucky, so far, with eating out. But, like I said, eating out is not a common occurrence. Our house is gluten-free for the most part. There is one cereal and one loaf of bread. I'll label certain things as gluten-free so it doesn't get contaminated by the bread (butter, jelly, etc.) Most everything is safe here.

anabananakins Explorer
anabananakins
Posted

I got glutened once on my recent trip, but before that I can't remember - months and months. But I live alone and I'm single and my friends let me pick where we eat (which I don't do all that often if I'm not travelling). I share an office with one person who is careful and I go through a million paper towels when using the shared kitchen at work.

It's other people that are the problem, unfortunately! I think it's super easy to stay gluten free living alone.

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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,812
    • Most Online (within 30 mins)
      7,748
    Papa Emeritus 79
    Newest Member
    Papa Emeritus 79
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.