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

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
      131,159
    • Most Online (within 30 mins)
      7,748

    Laz
    Newest Member
    Laz
    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

    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
×
×
  • Create New...