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

The Severe Glutening Incidents Are Scaring The Daylights Out Of Me


elaine33

Recommended Posts

elaine33 Apprentice

ETA: I am meaning the severe glutening incidents I am reading about on the board. I have only been gluten free for 8 days now.

I was just wondering if there are some people who when they accidentally get glutened can feel it but it's not a major crisis usually?


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

Hi Elaine- Jjudging by the title of your post, you get really glutened. I am the same way....really sensitive and I think that you will find that you're in good comapny on this board. I react VERY STRONGLY to small amounts of gluten. For instance, I haven't eaten anything with gluten in almost 2 years, but if I happen to get cross-contaminated the reaction is just as strong as it was, if not worse. I know, within an hour, because I get incredibly nauseous, really cold and really out of it.

Do you know where you're getting glutened?

celiacgirls Apprentice

I've been gluten-free for almost 7 months so I'm pretty new also. The last time that I think I got glutened was a little over 3 weeks ago from some fast food fries that were supposed to be gluten-free. My stomach hurt a little after I ate it and I had constipation for close to 3 weeks. The worst thing for me was that I was irritable, moody, and unmotivated for 2 weeks after. I used to go around like that all the time but it felt much worse now since I know it is not normal to feel that way. :)

I didn't like it but it was a mild reaction compared to what I read on here. And I could do everything I needed to do.

Jestgar Rising Star

Hi Elaine,

My reactions are in proprtion to how much gluten I eat. It still takes only a very small amount to set me off, but getting cc'd is annoying rather than incapacitating.

jnclelland Contributor
ETA: I am meaning the severe glutening incidents I am reading about on the board. I have only been gluten free for 8 days now.

I was just wondering if there are some people who when they accidentally get glutened can feel it but it's not a major crisis usually?

I get sudden, gotta-go-to-the-bathroom-RIGHT-NOW D, but usually just once or twice over the course of an hour or so. Then it's pretty much over, except for some minor effects like my hands itching a little more than usual for a few days. (But that's still plenty of incentive to avoid CC as much as possible!)

Jeanne

Guest cassidy

I get extremely sick from cc amounts and it usually takes 3 weeks for me to feel 100% again. Everyone is different and it will get easier not to gluten yourself. In the beginning I was getting sick frequently, now it is about once every 3 months and that is only when I eat out - never at home anymore.

Gamecreature Rookie

The main difference is that before you were gluten-free, you experienced the symptoms all the time, so the effect becomes so much "background noise" to your life. When you go gluten-free, that background noise is removed, so when it comes back, it's much more noticeable.


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



Celiac.com Sponsor (A8-M):



eleep Enthusiast

My reactions are decidedly noticeable, but not crippling. When they do become overwhelming, it usually has to do with something else that's going on in my life -- some external stressor that I'm not in healthy enough shape to handle. And then I'm even talking about really big stuff -- a death in the family, being the one in charge of the funeral while my siblings are squabbling about it, my written qualifying exam, etc... The psychological "I can't deal" is worse for me than the physical feeling -- generally reactions are times when I really need things to be calm and stable around me.

emcmaster Collaborator

When I first went gluten-free, the symptoms of a glutening were worse than I had felt before I went gluten-free. But over time, presumably as I've healed, the effects of a glutening are less of a problem. While some people would see that as a reason to eat gluten again, I see it as an indicator of how far my body has come in healing itself - I would never want to be as damaged as I was before I went gluten-free.

What I mean to say is that it's possible your episodes will get more managable the longer you stay gluten-free.

ArtGirl Enthusiast
I was just wondering if there are some people who when they accidentally get glutened can feel it but it's not a major crisis usually?

I'm glad you started this thread. Because of all the posts from people who get really sick with even a small amount of CC, I thought that maybe I should expect this, too. I guess I've been glutened over the last few months of being gluten-free, but most of the time the symptoms have been very mild compared with my gluten-filled previous life. In fact, I really thought it was something else because the severity didn't match what I was reading here.

The first reaction is irritability and then about 15 hours after being glutened I have intestinal rumblings and gas,followed by 3-4 hours of D every half hour or so, then that clears up and I'm fatigued and unmotivated for a day or two. Even so, it rarely keeps me from doing what I want to do, except for staying near a bathroom when the D is in full swing.

luvs2eat Collaborator

Same for me, ArtGirl... but sooner... tummy hurricanes and explosive D... but it's not so bad that I'm incapacitated.

peasoup Rookie

I get hit immediately - almost before I've finished eating I know it wasn't good (at least I find it easy to identify what caused it). My stomach is dreadful the rest of the day - can barely eat anything until the next day just maybe some raw veg and a bit of meat in the evening if it happened in the morning. The next day I normally feel a lot better but constipation lasts and my stomach feels really tender (like I've been punched in the stomach) and delicate for the next few days/a week so I just go easy on it until it feels better again.

I also get a really bad reaction to beans, but not all legumes - I can take peanuts and red split lentils fine, but kidney beans, chickpeas, blackeyed beans, baked beans etc etc are a big no no. Don't know why and it's very annoying cos I love them.

ladybugme Newbie

For me it is the knowledge of "how sick I was" to keep me vigilant for CC. I agree with the above post, that previous to diagnoses or becoming "gluten-free" it was present 24/7. It was our way of life. Now that we are beginning to see some semblance of normal living, cross-contamination rears it's ugly head. We all have fear of cc - but for me it is reassuring to know why I am sick - because of gluten present - and not that it is all in my head. It gets easier!

tarnalberry Community Regular

I was never horribly symptomatic, and I don't get massive symptoms when I get glutened - sometimes I'm not even quite sure if my stomach is being bothered by gluten or something else (dairy, especially). There are others on the board who aren't highly sensitive either, but we know it still does damage internally even if we don't feel awful.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,602
    • Most Online (within 30 mins)
      7,748

    Victor bowden
    Newest Member
    Victor bowden
    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

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.