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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,694
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.