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106 Comments

  1. 1

    Celia

    No, you most definitely are NOT alone. And I, too, have taken PF Chang’s off my list as I was so sick, I had the big accident.
    My mother had these, my aunt too. Sometimes it just comes out of the blue. And it is totally disgusting. I know I was snivelling the whole time I was cleaning up and I was at my sister’s house to boot,
    One thing I learned from that horrible experience was to keep a bag with clean pants/underwear, socks and kleenex and wipes around at all times. It can’t hurt to have it in the car and it certainly could be a lifesaver.

    Reply
  2. 2

    Thankful for Whole Foods

    You are NOT alone. I’m right now trying to figure out if I accidentally ate some dairy since for me that is more likely the cause of today’s “oh man, I didn’t quite get there” experience than gluten. As far as explaining it, I wouldn’t mention that to people if I didn’t have to. Just vent here or on a celiac forum where you can do so anonymously and don’t have to see anyone’s face. So sorry you had to experience that! TFWF

    Reply
  3. 3

    Dick

    It was a couple of years ago. Pre-diagnosis. We were in Amsterdam on a holiday trip, walking back to our hotel after a meal. I thought I was going to pass some gas. Wrong! Fortunately it was only a block or so to the hotel, and not a huge mess, not quite beyond the capacity of my underpants (which required a fair amount of work to get clean). Now I realize it was most likely part of the celiac-related digestive problems I’d been having for a while. Not pleasant, but fortunately not a major embarrassment or something that I had to wait a long time to clean up. I was lucky, in the weird sort of way we’re sometimes “lucky”.

    And for Anonymous: it can happen at probably any age– I was in my early 70’s when it happened to me.

    Reply
    1. 3.1

      MooseMalibu

      My boyfriend always says… ‘never trust a fart.’ Wise man.

      Reply
  4. 4

    MooseMalibu

    Before I got diagnosed with Celiac in October 2013 I had an unfortunate accident in the summer while at work! It was so humiliating. Thankfully I wear scrubs and we have multiple sets at work so I just cleaned myself up in our shower (thank goodness), put on a new pair of scrubs and went commando the rest of the work shift. But you are SO not alone. And no one says S**@ about it at work either… I think they were more embarrassed for me than I was. They at least understand the severity of a glutening for a Celiac. No one takes my gluten free status lightly. Hope my experience makes you feel better. ;)

    Reply
    1. 4.1

      Vicky

      HOLY MOLY! Sorry for the sort-of necro but your story just answered a lingering question I had for a while that I had completely forgotten about. A nurse I used to work with came to me during our shift and asked if she could borrow a nightgown (it was a senior home) so I was like “Sure I guess you ran out? Not sure what the laundry’s been doing lately.” She turned around and there it was, it was like something exploded in her pants. She was horrified and I had no clue what could cause a 60-year old to have such accidents. It was the first time I heard about it. It was during my pre-GF days during which I had absolutely no knowledge of Celiac Disease whatsoever.

      I guess now I know the reason it happened! She never told us, and I was afraid to ask to respect her privacy, but it makes a lot of sense. She was constantly off work for being sick.

      Thanks for your unfortunate but funny anecdote!

      Reply
  5. 5

    Td

    Sadly yes. I was driving my kid to work. Made it to a service station, but just the act of walking inside to the bathroom was the end of me. I cleaned myself up, rinsed out the underwear and tossed it in the garbage. I was mortified.

    Reply
  6. 6

    Nin

    Oh yes…it happened to me in a movie theater…yeah. And it has happened to my grown children with celiac, too. You are definitely not alone…

    Reply
  7. 7

    margaret

    You are not alone. Happened to me pre-diagnosis, walking up Sixth Avenue in New York City. Oh, the humiliation of having to return to my hotel and walk through the lobby. Shortly post-diagnosis: checking in at the Vienna (Austria) airport. Not funny at all; fortunately we were early for our flight and there was a luxury lingerie shop open. Nowadays I always carry extra (meaning really extra – double) changes of underclothing/clothing. And yes, I do check out the public facilities (if there are any!) and restaurant lay-out.
    GD: Can’t thank you enough for bringing this topic up. The feelings of isolation (and disgust) are worse than the disease itself.

    Reply
    1. 7.1

      Gluten Dude

      That’s what I’m here for…

      Reply
  8. 8

    Lee

    No, you’re not alone. It happened to me at work, so I told my boss my stomach was upset and she let me leave. I think back over the years and how many times I would wake up feeling like crap, then eat breakfast and spend the next hour in the bathroom, only to be late for work, or have to call in. I know my boss thought I was making it up, but how do you drive 30 minutes to work, if you can’t get off of the toilet? Oh, and my husband, who isn’t a Celiac has what he calls “Senior Moments”, sometimes. Sometimes you think it’s gas, but it’s not.

    Reply
  9. 9

    GF Jane

    A neighbor or mine, a peds nurse mom who volunteers in her kid’s elementary school clinic, complains about this kid that craps his pants frequently in school. I said he must have food issues that his parents are not aware of and suggested that she mention it to them. She (being the mainstream nurse and all) said the kid was old enough to know better so she lets him just sit in it until his parents arrive. I told her that both my kid and I sh*t our pants if we’ve been glutened and cannot find a seat quick enough. Poor kiddo that she is in a position to help, but won’t because of her ignorance.

    Reply
    1. 9.1

      Catherine N

      Can you send a note to the principal of the school or something, sharing your concerns? That poor kid!

      Reply
      1. 9.1.1

        GF Jane

        I did that and provided gluten/dairy info in a note to the school administration.

        Reply
        1. 9.1.1.1

          Sue in Alberta

          Good on you, Jane.

          Reply
  10. 10

    Theresa

    You are so not alone! I try to be a runner and its a big issue with me when I run. I finally brought this issue up with my nurse practitioner (very smart lady!) and that’s what finally got me diagnosed. I take some precautions wherever I am at now but I always carry around a small change of clothes just in case. You are not alone! Thanks for bringing it up. Too embarrassing to talk about with people who just don’t understand what we go through.

    Reply
  11. 11

    Fiona

    Same here Teresa! I actually pooped during a run, and had to survive like 2 miles with it in my pants. Too gross for words. Of course, that was pre diagnosis, and I HOPE it never happens again!!!

    Reply
  12. 12

    Sue in Alberta

    First off, I’m so sorry you have experienced this. It’s like it’s the last bastion of our dignity and when it happens it is, for lack of better words, demoralizing.
    Before diagnosis, it was a very real issue for me. I had one surgeon ask me if I had “movements” in my sleep?!? That ratcheted up my anxiety level, let me tell you but it became my new mantra -” at least I don’t go in my sleep”.
    Having said this though, it has happened to us and we survived it.
    It can strengthen the resolve to eat clean at all costs. Also, anyone who has gone through this would be much more compassionate than the pediatric nurse mentioned in a previous post. If we don’t learn ANYTHING from this, all we did was simply
    mess in our pants.

    Reply
  13. 13

    Catherine

    I am not celiac, but gluten intolerant, and I too have had numerous near misses due to gluten emergencies. Somehow I was able to avoid it. Until I went to Mexico, came home and apparently had Montezuma’s…got stuck in a backup…in a tunnel…and, even after so many near misses due to gluten, I finally couldn’t hold it anymore. Be glad you had leather seats. I have fabric. Tried to drive home the whole way somehow standing up…kinda…it was horrifying. And of course, when I got home, neighbors who were moving out were blocking my parking space…as it should be in this unjust world…You are not alone. I pooped my pants at 38. It’ll be okay. I recovered from it, and sorta have a sense of humor about it now, however very unfunny it was at the time. Don’t worry about it!

    Reply
  14. 14

    thetxlady

    Yep, never trust a fart. Sharts killed my favorite undies & a well loved pair of pj bottoms. Taking daily apple pectin has helped firm up the liquid parade & make bathroom stops more regular. Naturopath told me “being gassy” is a sign of candida (yes on top of celiac fun). Small changes to diet & knowing processed foods will have issues, has helped.
    Oh & the pf changs thing…soy sauce they don’t believe contains flour. Chef in a hurry too easily can forget & liberally dose a stir fry…jus sayin

    Reply
  15. 15

    Brooke

    Normally my system goes on lock down after I’ve been glutened, but yesterday it was all I could to stray 5 ft. from the bathroom. Has anyone gone from being constipated after ingesting gluten to the…well, not trusting a fart issue?I wondered if I had a 24hr virus or had been glutened as I had eaten out earlier.

    Reply
    1. 15.1

      Sherry

      That is how I react after ingesting gluten.

      Reply
      1. 15.1.1

        Brittany

        I’m the same way. My GI called it “overflow” basically you’re so constipated that when you do have to go what comes out had to go around what won’t which makes it seem like diarrhea

        Reply
    2. 15.2

      Anon

      Yes I have the same symptoms one extreme to the other with no notice

      Reply
  16. 16

    IrishHeart

    I do not know a single celiac who has not had an “UH-OH! I need a bathroom RIGHT NOW!” moment (or 20) pre-diagnosis.
    But I admit,with some measure of humor now that several years have passed, that I can relate to the “oops” that is the mother of all
    “OMG, did that just happen?”

    I knew where every public restroom was within a 150 mile radius of my home. I had my own key to the locked teacher’s restroom because I was not going to wait for the that key to get back to the hook in the teacher’s lounge area. (people would forget to bring it back!) I was so glad to teach on the collegiate level later in life because there were MORE restrooms and they were never locked.
    (hey, that seemed like a big deal at the time.. and whoohoo!! )

    But, I can recall the 45 minute- drive home one day after teaching my last class, the winding back roads to our remote home in the countryside, the anxiety of trying to keep it in while suffering horrid abdominal pain, sweating and telling myself,,,,it’s ok, it;s ok…walking with clenched butt cheeks to the door (that is NOT easy!) , fumbling with the key, thinking come on, come on!,…I am so close…and then, my dog wanted to jump up and greet me and lick my face ..I love you too, now .get out of the way, Gracie!….and then, ugh! game over.

    (or the time I just did it in the woods on the side of the road …or in a trash bag lined wastebasket because someone was already in the only bathroom in the house…) And yes, I carried wet wipes and extra clothes in the car and Yes, I carried immodium in my bag (I should have taken out stock in that stuff) . I thought it just was my lot in life to always have bad guts….sigh, those were such good times.

    It’s yucky for sure, but please know YOU are NEVER alone in this regard. It’s unfortunate it happens, but it is nothing to be ashamed of and I hope you put it behind you. (no pun intended, I swear) You may go on to have a child someday and when you pee and shyte on the table and do so many more yucky things during that blessed moment, you’ll think this was nothing at all. Life is full of embarassing and messy moments for everyone, but kiddo, you can get past this one, I promise. You’re not alone. Humans, in general, are messy creatures :)

    ((hugs)) to you. Chin up, now! ;)

    Reply
    1. 16.1

      Gluten Dude

      “I hope you put it behind you.”

      Perhaps no pun, but still made me smile.

      P.S. I’m not very mature.

      Reply
      1. 16.1.1

        IrishHeart

        no, really, I because I hadn’t noticed that.

        Reply
        1. 16.1.1.1

          IrishHeart

          omg, I was laughing so hard at you, I made 2 typos.

          You’re a juvenile, you sillypants. :)

          Reply
  17. 17

    Janelle

    My worst accidental gluten contamination (beer-soaked brisket!!) resulted in violent throwing up AND I peed my pants. Oh, and I was at an NFL football game…. so this was all in public. Whee!! I was kicked out of the stadium for being drunk. They wouldn’t listen when my husband tried to explain that this was clearly an allergic reaction, and that I hadn’t been drinking enough alcohol for this behavior. And so, I learned to always ask how meat is prepared!

    Reply
  18. 18

    Maggie

    I’m not celiac just very gluten sensitive. Having the slightest exposure to gluten I have the runs so bad I cant make it to the bathroom fast enough. I have had several times accidents on the floor, making a huge embarrassing mess and I’m 40. It sucks.
    I Just learn from it and move on..

    Reply
  19. 19
  20. 20

    Marilyn

    I was so happy – no – happy is not the word I should use – to read this post and comments. They all sound like the story of my life. I was never diagnosed with celiac disease, but put myself on a gluten free diet after I got sick and tired about thinking about poop – such as – I can’t go today – I might have to poop – or – how can I be on a golf course for 3 or 4 hours – I might have to poop – I can go on and on, and the reason I used the word “happy” is because I didn’t know this happened to other people. It’s pretty difficult when you run your whole life thinking about a subject like poop. Since I became gluten free, my acid reflux, that I suffered with forever, is now gone. All of the tests I had, and all of the doctors visits, and no one ever mentioned “gluten intolerance.” Thank you for this site and all of the information and the help.

    Reply
  21. 21

    julie rumreich

    Yes, yes, and oh so unfortunately yes. I have had this problem since I was a kid. I was 32 before I knew what gluten intolerance was and began going gluten free. When I get glutened there had better be a bathroom nearby and it had better be empty or I’m in big trouble. It took some time to figure out and learn all the things gluten was in and so for a time I even wore pads because I just never knew when it would hit and I was really tired of cleaning up after these awful episodes! I’m 53 now and have been diagnosed with Celiac’s and thankfully have a pretty good idea of what will bother me and what won’t and I’m anal (catch the pun there?) about avoiding gluten so it doesn’t happen nearly as often now, thank heavens! I feel your pain sister!

    Reply
  22. 22

    SillyYak

    Yes.. Just a few weeks ago actually. Walking my dog to the park when the pains hit and I pinch-and-shuffled my mile walk home.. And by the way, running makes it WORSE! Was within sight of my house when it was too painful to hold it any longer. I was mortified and couldn’t even tell my husband about it until much later. I still am afraid to walk because their toilets are closed for the season, so I drive to the park to walk the dog. 34 years old and crapping your pants was never something I expected to ever happen to me. I’m happy to know that I am not alone, at least so thank you for this post.

    Reply
  23. 23

    judy jaspan

    Oh Geeez… No you are not the only one. I have had Celiac for 20 years. I have been there. I have learned to never go anywhere without my Imodium. It is my lifeline. Sometimes I leave the house and within 1/2 a mile I tell my husband, “nope, not happening, turn around,” Somedays you just have to be home and be comfortable. Hang in there. Some days are diamonds and some days are stones.

    Reply
  24. 24

    Lin=ma Bean

    This happens to lots of people – even non-Celiacs when they get a stomach virus.

    There are a couple of things you can do to help. One is wear maxi pads if you think you might have an issue. Keep a towel in your car to sit on. Towels in cars are always useful. I am a big fan of keeping a towel handy (Don’t panic and keep a towel with you). Another is improving the muscle control of the area. Keigel type exercises can help. Squeeze and hold. I don’t need to get anatomical on you, do I? You know what I mean! :)

    You are lucky you got the leather seat option on your car. Its easier to clean than cloth!

    Reply
    1. 24.1

      Lima Bean

      I can’t type my own name, apparently!

      Reply
      1. 24.1.1

        IrishHeart

        that’s probably cuz you’re doing those keigels while typing, Ms. bean
        ;) Happy to “see” you. It’s been awhile. xxoo

        Reply
  25. 25

    Celiyak

    Oh, yes! The worst time occurred right after I ate at HuHot at the mall. I was in the fitting room at a department store, getting ready to try on a dress. (Fortunately, I didn’t have it on yet!) Suddenly my bowels unleashed all over my my underwear, my legs, the floor–large quantities of it! It was the middle of the summer–and, thank goodness, I had worn a sweater into the air-conditioned restaurant! I used it to clean up my legs and the floor. I also wrapped up my nasty underwear in it. Then I sneaked out of the stinky fitting room, deposited the mess–sweater, underwear and all–into a nearby trash can and headed for the restroom to continue the cleanup. Next, I went straight to the lingerie department, bought a pair of underwear, returned to the restroom to put them on–and then drove home. Worst. Day. Ever.
    Now I ALWAYS carry a diarrhea “kit” in my purse. It contains a fresh pair of undies, wipes, a panty shield, and a few tablets of Immodium. I keep it together in a Ziploc bag.
    Humiliating? You bet! But you learn to cope. It’s comforting to read everyone’s stories!

    Reply
  26. 26

    Anna

    Oof-dah! Yes indeed!

    Once I did, in bed while sleeping. Horrified! What the heck is this stuff on the sheets! From that moment on, I was afraid to fart anytime I wasn’t sitting on the toilet.

    Mornings are difficult. Lucky I found a job that allows me to start my shift whenever I feel like it, pretty much.

    I get these urges, can barely control theme urgent needs to find a toilet NOW. A couple of times I have actually got my underwear off without crapping in them, but then when I bend my butt over the toilet the crap sprays all over the toilet seat, walls, floor… Oh, and then I can see I dragged the hem of my sweater in it.

    And it’s so not like me to be messy and stinky.

    Reply
  27. 27

    Kimberly Kuehl

    Hello, yes it has happened! Once in private and another while running to bathroom in front of friend. It’s awful. We weren’t laughing then, but we do now. I now am super careful with traveling, shopping, a run to the store and work. Know what I ate, when did I p…….p last, and location of nearest bathroom! Hasn’t happened for over a year now. It’s just another thing, part of my life, and I worry no more. So as you see, you are not alone by any means and I’m glad you shared your story, Kim Kuehl

    Reply
  28. 28

    Claudia

    I developed Microscopic Colitis a short time after my diagnosis. I had the runs for 3 months. I could not go out to eat as I could not be far from a bathroom. At work I had to run to the bathroom several times in my shift. I had a couple of accidents though not too big. It happens and you are not alone.

    Reply
  29. 29

    Denise Leitzel

    Dear anonymous,
    It has happened to me, and yes, it is mortifying. I’d like to add that since I’ve been prescribed Hyoscyamine (sub-lingual for emergencies, and time delay release for regular use), and Diphenoxylate/Atropine (when necessary), I have not had an incident of fecal incontinence.
    Speak to your GP or Gastro-Enterologist about these medications. My quality of life has improved greatly since I’ve had access to these drugs, especially the sub-lingual Hyosciamine when I get terrible cramping and diarrhea. Good luck!

    Reply
  30. 30

    BlushinRose

    This absolutely can and often does happen to people who aren’t supposed to eat gluten! Before going no-gluten it was a daily experience for me. I got so tired of it that I took the bull by the horns and renewed my efforts with yet another round of doctors. Since I stopped eating gluten, it has happened to me one time – after visiting my sister and eating out at a place that obviously had no idea what gluten is. Now I have developed pelvic floor issues from all the hours I have spent on the potty with spasms that I can only describe as the “dry heaves, but down there.” So I went to a physical therapist for pelvic floor problems (I don’t want the surgery) and of course she prescribed kegels to prevent things from getting worse. However, she did suggest I take Immodium on a regular basis (what my dr had also said but I don’t love the idea of being on meds all the time). As she said, our intestine muscles are so much stronger than the rectal muscles that the intestines will win out every time. I’m a believer now. It is just something that goes along with gluten.

    Reply
  31. 31

    Donna

    I don’t comment often, but for this one I feel compelled. My biggest motivator for finding a diagnosis was to fight not only the crampy runs, but also to find out why my poop smelled so much worse some days than others. Turns out, once I got a diasnosis and stopped eating gluten, both the runs and the ungodly stench went away. But that didn’t come fast enough to stop me from having some of the most scarring experiences of my life.

    One time, during sex…yes, it happened. A leak. (Because I was always leaking, it seemed) To make it worse, my partner was horrified and freaked out, taking my humiliation to a whole new level. I’ll never forget that, and in fact, I’m kind of surprised I ever got up the guts to get naked with a man again. My motivation to get a diagnosis and a good treatment plan skyrocketed after that, but as we all know, it takes some doctors much longer than others. It takes the time it takes, sadly.

    So, you crapped your pants. I crapped my partner. I say we raise a big goblet of wine in honor of our mishaps and laugh it off. What else can we do?

    Reply
    1. 31.1

      IrishHeart

      Donna,
      I am not laughing at you, hon, but your story and your delivery…..
      and this line in particular:

      “.I’m kind of surprised I ever got up the guts to get naked with a man again.” …. ironic, really…. using the term “get up the guts”..well, it just
      made me laugh.

      I do, indeed, raise my glass to you, hon. Salute! and Slainte!
      (Gaelic for: To your health!)
      Cheers, IH

      Reply
    2. 31.2

      Miss Dee Meanor

      Okay, Donna! You win the best story and had me laughing at the way you told it (not because it happened). It certainly wins over my Walmart tale. Of course, in Walmart I just blended in with the usual patrons. :)

      Reply
      1. 31.2.1

        IrishHeart

        dee…walmart people…lmao

        Reply
    3. 31.3

      Nicole

      “So, you crapped your pants. I crapped my partner.” I had just taken a big gulp of wine! Lucky for me, it stayed in my mouth.

      Reply
  32. 32

    Amy

    I must be insane because I’m the opposite! I handled pooping my pants by telling everyone. My family would bow their heads in shame while going through the drill…find, grab and take anything to help me get home. We had trash bags and supplies in our trunk, good friends would plead..”Don’t poop yourself at my party”, vacation tour buses were a nightmare. I’d tell the operators of tours what may happen. Thankfully after my diagnosis, these announcements, dinner party fiasco and relieving myself while driving have ceased. My last incident before diagnosed was in backyard of a neighbors home. She was too stressed out while unlocking door as I screamed ” I’m sh$tting myself!”
    Not a pretty commentary, but 100% truthful.

    Reply
    1. 32.1

      Nicole

      OMG, Amy! I laughed so hard at your post. Thanks for sharing. :)

      Reply
  33. 33

    Gluten Dude

    Most honest, open community EVER. Thanks for sharing your stories folks. I’m sure it’s been invaluable to Betsy.

    Reply
  34. 34

    IrishHeart

    Perhaps it’s time for yet another new tee shirt, gang?

    “I pooped my pants….. meh, shit happens. I’m still cool”

    on the back

    “Celiacs unite. Poop, love and understanding…”

    seriously, every time I come up with one of these, we could be making a damn fortune.

    Reply
    1. 34.1

      Gluten Dude

      Time to open up a Gluten Dude store with funny t-shirts. All proceeds go to the “Keep Gluten Dude’s Beer Fridge Stocked” foundation.

      Reply
      1. 34.1.1

        IrishHeart

        Seriously, dude….if you comb through the posts of the last 2 years, you’ll find some awesome contributions. We would have been rich by now. lmao

        Reply
    2. 34.2

      Sue in Alberta

      I like the line from Lima Bean’s post – “Don’t panic and keep a towel with you.”
      So help me, instead of dead people, I see t-shirts.

      Reply
      1. 34.2.1

        Lima bean

        It’s from ” Hitchhiking thru the Galaxy”. It is very good words to live by.

        Reply
  35. 35

    Peggy

    Unfortunately I have the sh*tz even when I am GF. I rarely leave home anymore. I never know when Ms.Craps a-lot will need to find a toilet in a hurry. The alternative is a prescription for immodium which causes constipation. I accept it as a normal way of life.

    Reply
    1. 35.1

      IrishHeart

      But, Peggy, hon….it is not normal for a celiac to continue to have the big D after diagnosis and being strictly GF. Something ELSE is going on and it could be any number of things: microscopic colitis, UC, other IBD (inflammatory bowel disease), another food intolerance, MCAS, …..something is making this happen.

      Do you take probiotics?

      If this continues, it means you are not absorbing properly and you may need to see a GI doctor.

      Please do not accept constant crapping as a “way of life”.
      It’s not the way “it has to be” and you should not live in your house.

      Reply
      1. 35.1.1

        Nicole

        I am starting to believe that most people who think they are 100% gluten free, are not. I was diagnosed almost 3 years ago and I have found the only way to be 100% gluten free is to eat at home, make everything myself, and never use any kind of gluten free flour unless it is from a 100% dedicated gluten free facility. I am positive that I got glutened from Bob’s Red Mill sweet sorghum flour the other day….never again.

        Reply
    2. 35.2

      Cheryl

      I still have this problem, have been thru all the tests known to medical man. Eat nothing that I have NOT personally cooked and am certain is 100% GF, Removed all dairy, added diary back, no spicy foods, no raw foods, no NOTHING but water (almost – LOL).

      NOTHING Changed. My doctor finally decided he will need to start a research study with Celiac’s who continue with this problem to see if damage fails to heal and causes this in a small percentage of Celiac’s.

      Reply
  36. 36

    Shannon

    Awesome post! Oh the many joys of Celiac. My darling husband knows “um uh-oh” and “we have to go now” really mean, quick find a bathroom before I explode!!!!! Glad to know that I am not alone.

    P.S.- love the t-shirt idea! I would totally wear one.

    Reply
  37. 37

    Chloe

    Oh my goodness, we’ve all been there! It can be really upsetting, and really hard to talk about! I’m so lucky the guy in my life is the most chilled out person in the world – growing up this was not a “discussed topic” at home (family of closet celiacs!!) and until him I found it impossible to talk about. What a relief having someone to share your deepest, darkest secrets huh? :)

    I have super bad anxiety so I have to do a little ritual before I leave the house nowadays! But to be honest it’s the anxiety that causes it more than anything else now, I think. It’s a work in progress for me, but it’s getting better!

    I’m sorry this happened but chin up! Nothing to be ashamed of!

    I’m 25 , so it’s a huge comfort to see this community coming together for support! *hugs*

    Reply
  38. 38

    bethanne

    I’m 35. It’ll be 2 years post diagnosis in a month. It happened to me a couple of months ago IN MY KITCHEN. I squatted down to give the baby something and…. what the hell? First time in my life.

    Reply
  39. 39

    Nicole

    Td’s story sounds a little like mine. I was on the bus going to work and I knew I could not make it. I finally decided to get off at the bagel shop and it was a mess. I was wearing a skirt, thank god. I rinsed everything in the sink and threw away my underwear. I could not believe it.

    Reply
  40. 40

    Molly (Sprue Story)

    This has never happened to me IN PUBLIC, and for that I am grateful. However, it is still really not okay at home. I feel your pain!

    Reply
  41. 41

    RyGuy

    Wow, I think I need to cook more at home! I was diagnosed in February 2014, and while this hasn’t happened to me, I now realize the stomach “issues” aren’t just stress, I definitely react, suddenly when I eat unclean and still underestimate the impact of gluten. I get very apologetic when I go to someone else’s house, I tell them ahead of time the difficulty; I try to be super careful at restaurants that claim GF, and yet I’ve been sick for three days after eating a “GF” pizza! I followed advice on this site: call the manager, question them at the restaurant, etc, and I still got sick! I think I’m too timid, and “willing” to put up with feeling bad. Thanks for clarifying that I still don’t get it.

    Reply
    1. 41.1

      IrishHeart

      RyGUY
      Since you are newly diagnosed, your best bet is to get some healing time under your belt before venturing out too much at first. Stick to whole foods, ditch dairy for a few months and give your body some time to heal. It gets better, I promise!

      Celiacs can successfully eat out, use GF flours and foods in moderation (dedicated facilities are to be applauded for their efforts)
      and never get CCed. Many people do this without issues.

      But getting hit by gluten CC is a fact of life. Do not let it make you fearful, ok?

      A great book is REAL LIFE WITH CELIAC DISEASE by Melinda Dennis and Daniel Leffler. I highly recommend it. Best wishes and welcome to the family!

      Reply
  42. 42

    Amber

    I have Celiac Disease, but my son is gluten intolerant and he is oddly proud of this incident, however he is a 13 year old boy. One day he and some friends were “ding dong ditching” (before we realized he was gluten intolerant) and apparently it was his turn to ring the bell and run. So he was up at the door rang the door bell, tripped, the person came to the door as he was getting up and running and as he was tearing out of there he totally pooped his pants. Now he calls it, ” ding dong ditch and shit” But hey, my kid doesn’t play video games…. at least I can say that. Lol.

    I am sorry you had the big accident. Unfortunately it had either happened to most of us our almost happened….or its still waiting to. But either way, it is no fun. Celiac just sucks. I don’t even date anymore because it’s just too much of a pain. Good luck honey, I am sorry:(

    Reply
  43. 43

    Jiffy

    I am relieved to read this post- brave and bold & important to get this message out on a subject that is humiliating. I have been diagnosed with Celiac for 2 years and recently became very sick, for reasons unknown to my doctors at first since I was strictly GF on food & my bloodwork came back normal. After a month of having constant diarrhea, exhausted and starved, I had another endoscopy and for the first time a colonoscopy ( I am well under the 50 age!). Embarrassing, but necessary. It was discovered I had Lymthocytic Colitis, which very often is mistaken for Irritable Bowel Syndrome. Over the month I was sick I had several accidents while I was sleeping (yes, horrible & happened several times). Thank God I have a loving and supportive husband, still so humiliating for me. I had taken several different prescription & over the counter medicines per my doctors direction, and nothing worked. Thankfully the Colitis was discovered and with the now proper medicine, I am much better. My advice is to see a GI doctor and have the tests done!

    Reply
    1. 43.1

      IrishHeart

      Jiffy, thank you for reinforcing the advice that continuous symptoms after DX should be checked out because it is not always “just because we have celiac”. Any number of things can cause bowel issues IN CONJUNCTION with CD (inflammatory bowel diseases like Crohn’s, UC, microscopic colitis, c.diff., a lack of good bacteria in the gut, insufficient fiber, other food intolerances, etc. etc. )

      People should have themselves checked out by a good GI doc.

      I am glad you persisted and got a proper DX and feel better now. :)

      Reply
  44. 44

    RR

    Best. Post. EVER. I’m literally crying I’m laughing so hard reading all these comments b/c I’ve been through almost every single situation and can totally relate. (It helps that you all are great story tellers!). My toilet and I have established a very close relationship, and I, too, keep extra bags of clothes/underwear in my car, at work, and in my purse. It has happened to me at work, out to lunch with coworkers (who actually had to go out and buy me a change of clothes while I waited in the bathroom stall b/c I’d already used my “spare” clothes), at the mall, and worst of all, in my sister’s car when there was no where to stop. It’s horrifying, but you have to keep a good sense of humor about it…if you don’t, you’ll be MISERABLE.

    P.S. Like Denise (above), I also take Hyoscyamine and Diphen to help with those “uh-oh” moments, and taking a probiotic has really helped!

    Reply
  45. 45

    humbug

    No, you’re not alone. I very nearly had a major accident of that nature in the middle of Amsterdam recently. I ate at a cafe that I had successfully used the day before and I got glutened. I knew something was wrong as I traveled back to the hotel. I only just managed to dive into the staff bathroom in time – a second later and there would have been a huge mess:(
    I’m only traveling self-catering from now on…

    Reply
  46. 46

    Jessica

    I was diagnosed celiac about 10 months ago. I’ve not had this happen to me but there been really close calls. My job requires me to go overseas for 2 weeks at a time to the Middle East. I have no control where I stay and 2 meals a day are at the hotel. The days are spent on hikes and long bus rides. The probability of me getting glutened is so high that I just can’t imagine dealing.

    Thankfully, my boss has been very understanding and I haven’t done one of these trips since I was diagnosed and hope I don’t need to anytime soon.

    Yes, it’s just a diet, but when the shit hits the fan, it hits the fan. Crapping myself is my biggest fear. I have a change of clothes in my office and in my car. My biggest fear used to be skydiving, now it is definitely crapping my pants.

    Just livin’ the GF dream one day at a time.

    Reply
  47. 47

    Lissa

    It was pre – diagnoses and I was a young 14 year old girl. I was hanging out with my boyfriend and some friends when my stomach dropped. This was happening to me a lot at this time so my mom was “on call” for the “please pick me up NOW” phone call. Unfortunately, no one was answering at my house and this was before the cell phone days. I told everyone that I had to go and decided to chance walking home, rather then deal with the embarrassment of what would have followed after letting go in a house full of teenagers! My sweet boyfriend insisted on walking me home. I tried everything to get him to let me go alone and eventually had to start a fight and scream at him so that he wouldn’t witness what was about to happen….
    Half way home I pooped my pants :-(
    To top off the experience when I arrived home, my family was home (but didn’t get my call) and they had company over! They were yelling at me for being rude while I went straight upstairs and into the shower, clothes and all. I fessed up to my parents. My sweet boyfriend at the time is now my husband and it took me about 10 years to tell him the real story!

    Reply
  48. 48

    Becky

    I have totally pooed myself after being glutened. It’s AWFUL. My husband is really awesome about my disease, but even he couldn’t drive fast enough.

    Trust me, honey. You are most certainly not alone.

    Reply
  49. 49

    KMM

    UGH! Unfortunately, YES, this has happened. Mine was pre-diagnosis, and I was at a party. I had not only eaten something I didn’t know was bad for me, but I was drinking alcohol too. I had a very fun time of throwing up and pooping on the floor all at the same time, while my boyfriend stood in the bathroom with me. MAN THAT SURE IS SEXY!!! He then proceeded to help clean me and the bathroom up – what a saint! I found out a year later that I had Celiac and changed my diet and life. I kept the guy though (amazingly, after that) and he is now my husband of over 3 years! :-) He likes me a lot better after being gluten-free, and I’m sure likes the less-poopy version as well! LOL!

    I have been very close to having an accident, post-diagnosis, on a couple occasions. Thankfully, I know the signs like the back of my hand, so I can usually tell when I’ve been glutened and should not leave the vicinity of a restroom for hours.

    YOU ARE NOT ALONE, my dear!

    Reply
  50. 50

    Amy p

    Thanks for the comments, very reassuring! I just turned 40, and
    have been gluten free for about 3 years, I am not celiac, but gluten sensitive. Never had anything like this happen to me before, but was horrified today when I pooped my pants driving home today 5 miles from my home, and then had to get into my house past my teenage children. Good to hear I am not alone!

    Reply
  51. 51

    jane

    I am not celiac… i have semi regular tummy upset, though. I was driving home after a 12 hour shift and my stomach felt iffy. I pulled over at a Jack in the Box and relieved myself… but apparently that just let the cork loose from the bottle, so to speak. I got stuck in bad rush hour traffic and hit the point of no return– i was going to sh*t myself. I had a plastic bag and i tucked it under my butt, and i tried to pull down my pants to spare myself the poop running down my pant legs to my ankles… as i was in the most horrifying of positions, pants down, crapping myself into a target bag whilst driving my car, i got stuck next to an 18 wheeler truck. The truck driver could see me and was very entertained by the 20-something girl with her pants down stuck in traffic next to him. It was awful. I have a lot of sympathy for people with all kinds of digestive troubles.

    Reply
  52. 52

    Patricia

    The above comments had me horrified at first, but then laughing my head off! You have all made me realize that I must see a real celiac/gluten expert, because though I’ve been GF since 2006, lately, I’ve had some close calls. So I will see an expert, and find out if I have another disease besides gluten intolerance! I am pretty sure that I am not being “glutened” because of extensive research since 2006. I cook my own food. I must be an expert on what to avoid, including all those condiments that are suspect. I check any Rx before filling it. Ditto supplements. Husband and I each have our own toaster, tableware, pots, and pans, breadboard, etc. on and on!
    I previously told about being DNA tested at Enterolab in Texas. Recently, I tried to order the same test for a friend in a nursing home, and found that NYS requires certification of labs in other states, before allowing them to test NYS residents, and Enterolab no longer applies for certification!
    I complained to Gov. Cuomo, and got a great response from NYS Health Dept, explaining the above. It said NYS has some certified labs doing celiac tests! But a doctor must order the tests. We can live with that. Here are the labs they listed:
    Prometheus Laboratories, Inc./Mount Sinai Laboratory/and ARUP Laboratories. Remember, blood tests are unreliable. The endoscope test is not for everybody! I think DNA tests are the way to go. Good luck to all of you! Onward and upward! (off the toilet, that is) Patricia

    Reply
  53. 53

    Maggie

    YES and another big YES! – It has happened to me also!!! I did not put it together until the last (of three) episode(s) which occurred last weekend. I went to my grandson’s birthday party and of course, the meal is pizza, cake, donuts, lasagna and garlic bread! It was being held in a fast food restaurant and they had a clear Thai soup with shrimp. I bought it, ate it with relish and then proceeded to release my innards 5 hours later on barely arriving home – leaving a trail behind me that my poor husband ended up cleaning up while I De-soiled my entire outfit!!! DISGUSTING – and I was so embarrassed, I was sobbing in mortification!!!! 52 years old and this happens??!! Ridiculous. What was even more painful was the fact that my step-daughter and her husband made no allowances for my dietary needs when I bend and bow to all of theirs!!! Not fair and it hurt!

    Reply
  54. 54

    Derek

    Just ran across this website/blog yesterday. May I say very well done dude! And thanks to you for posting the brave letter and starting us off on this courageous discussion.

    Very soon after my Dr. diagnosed me as Celiac I went to a buffet. I really didn’t know how to take good care of myself around it back then. (Avoid buffets is one of them!). I left the buffet and just got to the car when it hit — about 1/2 bock away was a Starbucks — I knew they had a restroom. Could I make it — I tried the Serenity Prayer — what if it was locked? To horrible to contemplate. It wasn’t. I got in, the door locked and trousers pulled down — but never made it onto the toilet. Gushed everywhere — there seemed to be a sea of shit. My clothes were ok — I wondered if they would ever be able to clean it up. I did the best I could with toilet paper and anything I could wipe the toilet and floor with. I was horrified at the thought of the person who would have to clean my mess up. I’m afraid I took the easy way out — I thought about going to the counter and saying “I just shit all over your toilet, sorry.” But naw, I ran out the door and hoped none saw my face. I’ve been back several times since — they probably wonder what the big tips are about! And the toilet did clean up nicely.

    I’ve had several other near misses — but that was the worst. Later I learned that soy milk will also cause this sort of explosive, uncontrollable diarrhea for me. That time I wound up in the hills just outside of a suburban development, my two dogs loose chasing a deer and me squatting in the bushes making a terrible mess and a nearby homeowner shouting about the dogs chasing “his” deer and headed my way. My guess is he later found what I was hiding. Poor grump.

    Reply
  55. 55

    Diane Decker

    Before my diagnosis in January 2014 (almost six months now!), I had the poops nearly all day and night, every day. I was so malnourished that when my daughter finally hauled me into the emergency room, they immediately started looking for intestinal cancers. Thank God they called in a GI specialist who did an endoscopy and diagnosed celiac disease. It felt like a reprieve at the time. I was told I was only weeks or less from dying of malnutrition. Everything I ate or drank was going straight through. It took the colon cleansing prior to the endoscopy, blood transfusions, and several days of IV fluids to get me on my feet. I have not had another poop episode since. The other symptoms are taking longer to resolve-joint pain, muscle wasting, neuropathy, periodontal disease, arthritis-like symptoms, depression, brain fog. But at least I can leave the house for a short time. I was confined to my home for over a year because I could not control myself. I had to quit working at age 62 because of the “explosive diarrhea” and “farts that would clear a room”. Interestingly, my mom, who died in 2001 of diabetic complications, had exactly the same symptoms and was never diagnosed. Her diabetes was never controlled by diet or insulin. My guess is celiac was the culprit. We’ll never know. My heart goes out to anyone else who has such humiliating episodes and still does not get diagnosed. My 24-year-old son is one of them. He had the blood tests, which came back negative and his doctor refuses to do endoscopy “just because your mom thinks you have celiac”. They would rather remove his gall bladder. AAAGH.

    Reply
    1. 55.1

      Gluten Dude

      Find another doctor…one that will LISTEN and not JUDGE.

      Reply
    2. 55.2

      IrishHeart

      Diane wrote:
      “The other symptoms are taking longer to resolve-joint pain, muscle wasting, neuropathy, periodontal disease, arthritis-like symptoms, depression, brain fog. ”

      I understand this very well. Some symptoms take longer and it is very hard to be patient……Just hang in there, Diane.!!
      It gets better, I promise. Every day is a healing day. Make sure your B-12, folate and vit D are all good.

      And don’t let them yank your son’s GB unless it is diseased. And he could be negative on the panel, but still have celiac (6-22% are seronegative–I know, I was). Get a second …or third opinion if necessary. Of course, if after all the testing is negative, he can just go GF and see if it helps. I know I would.

      Reply
    3. 55.3

      Cheryl

      You are the first to tell a story even close to mine. I was told I had Fibromyalgia. For 10 years, every doctor wrote off every symptom to that missed diagnosis!

      When I was in critical condition, hemoglobin so low that I passed out each time I blinked my eyes (try driving to the doctor without blinking), I was forced to change doctors who ordered ambulance to the hospital the minute he got back the STAT blood test.

      The hospital felt safe drawing only ONE vial of blood for type and cross match until I had four units, then another 4 days before they were sure I would survive any testing. All due to malnutrition from Celiac.

      Find a new doctor for your son. The consequences are too real to risk on a doctor who likely was absent the 10 minutes they taught about nutrition and the need to actually digest the foods that we eat.

      Good luck

      Reply
  56. 56

    Ratchetroo

    My god this has made me chuckle, and brought back some rather traumatic memories. I am also part of this gang, having done the unmentionable in my unmentionables on a few occasions now.

    It happened during what is now referred to as the ‘dark days’ those crushing months prior to diagnosis, where I honestly thought I was seriously ill, and wouldn’t leave the doctors until they got to the real issue, not stress and IBS, which I had been fobbed off with for years. I was diagnosed at 29, having had undiagnosed DH since the age of 11, so a long time undiagnosed coeliac.

    Anyway, the main incident (I have had a few minor private ones through the years) happened in the months before diagnosis, I was just ill ALL the time. Had started seeing a lovely new fella, for about 10 months, and I had the most horrific pant pooping episode.

    Picture the scene, you’re an undiagnosed coeliac, having the most amazing Christmas dinner, trying loads of pudding, bread sauce (!) for the first time, yes REALLY!… You can see where it’s going…

    Anyway, we all head out for a quick after dinner stroll, it’s snowy and icy (a cold but bright Edinburgh Christmas Day), and I feel a sensation that can only be described as liquid lava, travelling through my pipes, evacuating from my bottom, at lightening speed… Thankfully it wasn’t audible, but it was on the move…

    I stop like a deer in headlights, oh did I mention, my walk was with my new partners ENTIRE family, who I’d just met for the first time on that Christmas Day? Oh I didn’t, well it was…

    And with every step we took back towards the house, I could feel another escapee, no matter how tight i squeezed the old bum cheeks! … Now slipping and Sliding on the ice i almost do the splits, well that was the last straw, almost through the jeans now, I’m convinced everyone knows what happened… And thankfully for me, my scottish in laws enjoyed a little tipple, and my strange penguin style bum walk across the snow and ice wasn’t noticed… And I survived the shame, until my partner told everyone the following year… Ahh the joys.

    I will add though, the bathroom clean up, well that was horrific, who showers in the afternoon, after Christmas dinner at their gran in laws house? Well I did… Whilst scrubbing jeans with wire wool and throwing my pants out the window, until I could get them in the outside bin later… Sigh, the things we have to endure! I am 31 now, survived it, and getting married to that fella soon… Lol!

    Reply
    1. 56.1

      Gluten Dude

      I’m not laughing at you…I’m laughing with you. Thanks for sharing your story.

      Reply
    2. 56.2

      Gem

      Thank you for your survival story. I’m 29 and spoke to my doctor about Coelic disease only today as I’ve been fobbed off for years with IBS. She has said it makes perfect sense and I have an appointment tomorrow to get the ball rolling. I have had a few accidents and the most recent one was just an hour ago, leading to me finding this blog at this time of morning. I’ve had an accident in the night 4 times now and the first time 7 years ago my husband and I had only just got together and it was the most humiliating time of my life to that point. There is hope and he went on to marry me :) after seeing that I doubt there isn’t owt we can’t share now lol. You really have made me chuckle as I too have had a Christmas ‘experience’ but fortunately for me it wasn’t with the in laws and didn’t involve chucking my trousers out the window. Thank you for the share you’ve lifted my spirit and I’m sure when my husband returns from the sofa he will ask why I’m so happy and I can tell him it’s because I’m not alone!x

      Reply
      1. 56.2.1

        Gluten Dude

        That’s what it’s all about. Hang in there.

        Reply
  57. 57

    Anonymous

    It is great to hear all of your stories and know I’m not alone in my bowel distress! I too have had my share of accidents. But I have to say the problem I suffer from most is constipation. I lack the urgency to go for quite a long time, then when it finally comes, I have to go right then! I can’t seem to figure out how to combat the severe constipation without giving myself the dreaded diarrhea. I’m so constipated most days that my guts just hurt. I’m thinking I may need to go back to a GI, but they aren’t as helpful as they’d like to think. I still think I may need a lower scope. Not sure what to do. Any suggestions? Why does poop control my life? If I can’t go, then I can’t leave the house because I’m miserable. If I can go, better stay home so I don’t have an accident! Blah. And where do you find these good doctors who listen and don’t judge I keep hearing about?

    Reply
  58. 58

    Nina

    Oh god-I can relate. Relate so hard…except…I don’t have Celiac disease. IBD instead, but I can relate all to well.

    If I don’t go to the bathroom at THE CERTAIN TIME IT WANTS I shit myself. Its common. I

    Reply
  59. 59

    Gem

    Well believe it or not I’m am reading these comment at 5 in the morning after JUST NOW having an accident in bed myself :( I’ve only just found out about coeliac disease and have so many symptoms I feel I’ve been suffering from it forever! I’m looking forward to my appointment at the quacks to get the ball rolling. After the humiliation of having to wake my husband up and send him to the sofa followed by ‘the big clean up’ I was feeling very deflated and embarrassed but now after reading all your comments I’m feeling much better and determined to get this sorted! Thanks for sharing peeps it’s very useful reading (I darent go back to sleep)

    Reply
  60. 60

    Cheryl

    Oh, my —– me too.

    But mine was post diagnosis more than 15 years. Makes me wonder if there is damage beyond what is evidence based. And it is usually those sloppy farts that one fails to notice. I never pass gas without running to the bathroom. No one understands why.
    I take three Imodium with my morning multi vitamin nearly every day that I want to leave the house.
    Thankfully, my gastroenterologist admits that medicine is a PRACTICE. I’ve had every test known to medicine man. Tried diary free, raw free, paleo, taste free, nothing but water (LOL), nothing changes.
    Thanks for sharing an otherwise “unspeakable” subject.

    It’s nice to know I am not reverting to babyhood or maybe suffering the initial stages of Alzheimer’s or some strange dementia. I am NEVER going to end up in some home with the inability to remember to constantly remind staff that I’m Celiac and cross contamination is a real issue.
    Not sure how I will prevent that – maybe just walk into the woods until I am totally lost in the coldest part of winter and fall asleep. I hear sleeping to death in freezing temps ain’t so bad. And then I can feel like the wild animals can have a good feed as long as they are gluten free.

    Reply
  61. 61

    Paleface

    …it all started in my teens. A young man asked me to a dance then out to dinner. Afterward at his parents house I ran to the bathroom, only to have him run after me yelling, “don’t use that one, it’s not hooked up yet”. Too bad, so sad, I did it in an unattached toilet. That boy never spoke to me again.
    …I was in my early 20’s, in school to become an operating room technologist. I was out on break and upon return to the class, I had to go. Luckily there was a restroom in that class room, for clinical testing. Unluckily, I didn’t make it. I dumped a load in my white uniform pants, while stinking up the whole classroom.
    …in my 30’s, in nursing school, at clinicals in the hospital. Yeay, I made it to the toilet, in my patients room :-\ I was so happy, I didn’t get caught by one of the nursing instructors…I would have been kicked out.
    …the first night I spent with my, then fiancé, in my 40’s, after his mother cooked a delicious meal for us. I puddled in his bed, in my sleep.
    …I was shopping at a store with my now fiancé, in my 50’s. I knew I had to go. We had just gone out to eat. I had used the toilet at the restaraunt, but that wasn’t enough, I had to go again. At the store, I found the bathroom, it was locked, I ran to the front for a clerk, someone had the key, I ran back and pounded on the door, nobody answered. I ran into the back of the store where it says employees only, and yelled. Nobody there. I looked for a bucket even with a mop in it…none. I went in my white capri’s while running out of the store in tears. I had to ride home in my fiances’s car.
    …I was at work and it hit me, I do nursing work in an office with cubicles. I couldn’t move and I couldn’t hold it. Lucky me, I was wearing a skirt? I grabbed my trash can. Lucky me? It had a trash bag liner in it…. I was mortified, stunk up the whole office which is shared with IT people, men and women, along with the nurses.
    When I think back, I always just thought it was an over active bowel, something I ate, greasy food, candy, cabbage. I always wrote it off as something that would pass, but not again and again and again. I’m almost 60, I’m a nurse for peats sake. I got off of the nursing floor 10 yrs ago, I thought it was the adrenaline doing it.
    I’m getting tested now, I just had my lab drawn and now at home, here I sit, with my stool kit. Now that all the doctors are younger than me, she just said, “you poor dear” . Hey, I’m still working out, 130 lbs, in good shape. Just a little tired. But I feel young, and never had a clue that I could have a disease like sprue celiac, IBS, colitis, etc… I always thought that it was my fault for eating too much or the wrong thing. Recently I told my husband that it was the adrenaline that I must get when I’m shopping or make a purchase at a store. Ugh, we joked that if I was constipated, I would simply go to a store and make a purchase. It sure beets laxatives. And, when having diarrhea, I needed to just sit on a toilet to get rid of the, “evil spirits”.
    It’s time to possibly go gluten free, AKA the “evil spirits” free.

    Reply
  62. 62

    freckles

    Once while on a Mediterranean Cruise, during an excursion to one of the busiest, public and ancient places in Europe, meaning there were no indoor toilets, without warning or any kind, my colon unloaded in explosion. My husband was so supportive. We had to leave the tour group (that saw everything) and get a taxi back to our ship. I would not leave the ship the rest of the week. I tried to avoid everyone that had witnessed the event.

    Reply
  63. 63

    freckles

    Once while on a Mediterranean Cruise, during the first excursion to one of the busiest, public and ancient places in Europe, meaning there were no indoor toilets, without warning or any kind, my colon unloaded in explosion. My husband was so supportive. We had to leave the tour group (that saw everything) and get a taxi back to our ship. I would not leave the ship the rest of the week. I tried to avoid everyone that had witnessed the event. I cried all week as it totally ruined my cruise. Mortified is an understatement.

    Reply
  64. 64

    Ellen

    okay pre diagnosed, i hate this because i’m embarrased as it is. i did not do it in a public place no while throwing up i did not know it would come out either end. so as my toilet was 1 square meter i had the door still open and i shit the whole freaking hallway, i just painted the shitty brown walls white and they were now shitty brown again… the horror of it all my now husband than just boyfriend of half a year was upstairs…. he was not allowed to come down before i cleaned up that mess…

    Reply
  65. 65

    amanda

    YES! This just happened to me a few days ago. I’m not celiac (verified via many tests) but after some Asian food and then diary that day I just pooped in my jeans! Came out of NOWHERE!!!! I had to drive home sitting in it. You’re not alone. I found this on google.. wow this is insane.

    Reply
    1. 65.1

      amanda

      Forgot to mention, I’m non celiac gluten sensitive. I can ONLY eat food at home it sucks as people call me antisocial

      Reply
  66. 66

    Astrid

    Reading this has helped me so much. The anxiety and fear about having another episode is the worst. Thanks for sharing everyone!

    Reply
  67. 67

    Rach

    Omg I’m so glad I’m not alone. It’s happened to me a few times, most recently tonight on the way home. Of course it hit while I was driving on a bridge across the bay, so I had no option other than to let it out. I tried to clean the seat of my car as best as I could. Ugh, it’s so mortifying when it happens. Curse you, celiac disease.

    Reply
  68. 68

    Alan

    Hi,

    I have just had the most appalling experience.

    I’ve been diagnosed coeliac for over 20 years and am strictly GF.

    Last night I accidentally contaminated my frying oil with wheat from frozen chips that were coated in gluten. At the time I thought, so what, that won’t make any difference.

    I felt fine all the next day, apart from a little bloating, which is not unusual.

    Then.

    I thought I was releasing a little gas.

    I kid you not. I was stood in a puddle of wet faeces. Down my legs, in my pants, and on the floor.

    This has never happened before, and I hope never again.
    The thing is, that I had no warning of it. No urgency, no need to go, nothing.

    Forgive me for this awful disclosure, I feel so ashamed, but hope others can know that we all suffer this way.

    Alan

    Reply
  69. 69

    Allen

    I feel like only celiacs understand these two pooping terms I made up, diarpation and constirrhea. You know, when it starts out one way and ends up being the other.

    Reply
  70. 70

    Erica

    I haven’t been diagnosed as I can’t physically do the gluten challenge. This has happened to me 4 (!) times. You are not alone. Gluten is my nemesis.

    Reply

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