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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

    5. - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748

    Jenny0384
    Newest Member
    Jenny0384
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.