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.

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article 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.