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

Where's The Most Inconvenient Place You've Realized You've Been Glutened


jkmunchkin

Recommended Posts

jerseyangel Proficient

Reading through all of these stories, I remembered another noteworthy time! My husband, son and I were driving home after going out to lunch (pre dx). We stopped at a smallish grocery store on the way to get deli stuff for the week ahead. I was beginning not to feel well, so I told them to go in and get everything fast so we could get home. About 5 minutes later, I knew I couldn't wait--and this store dosen't have public restrooms.

So, I drove down the block to Wendy's--leaving the two of them in the store--and used their restroom. Just made it, trying to look normal the whole way in. I had to call my husband from in there to tell them I had taken the car and left, but would be back in a few minutes.

Went I drove back up to the store, there they were, sitting on a bench like nothing out of the ordinary had happened! :lol:


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

I really take it to heart that most of these tales come from our prediagnosed stage of our disease. It must mean hopefully are getting our health back and are getting on top of this disease.

Just a wonderful thought.

Catherine

corinne Apprentice

It really is wonderful. I love the outdoors and couldn't give up being outside (and was fortunate enough to have the energy to continue my favourite sports at some level) even when I was at my worst (hence the amusing mishaps). It is so nice to be able to go for a run and not worry about carrying TP or go for a climb and not wonder if I'll make it through without a mishaps.

Guest ~jules~

I think the car is the worse one, on a road trip of course. Then camping, and of course our lovely vacation to disneyland this year, I had lots of D meds but I still had issues the whole time. No wait the absolute worse thing was waking up all night long losing sleep to go, now that sucked.

tracey* Rookie

I'm almost crying because now I KNOW I was glutened in my story ...

Pre-dx (aka the worst day of my life)

I was on a trip in Malaysia in January this year, we were on the top floor of a very hot, stinky and busy shopping centre that was at least 30 years old so everything was crowded and dank. All of a sudden I felt the URGE to find a bathroom but no one really spoke english :( In my urgency I kept saying 'bathroom bathroom bathroom' until my father luckily found me and asked for me.

LUCKILY (and thank the lord) the bathroom was just around the corner, however by this time I was already starting to pass out. In Malaysia you have to pay to use the restrooms, so while I was blacking out, the girl (who didn't speak english either) waited for me to fumble around my handbag for some money... By the time I found my way into a stall, it was .. too late. And for the next 20 mins I experienced the worst feelings I've ever had - alone, scared and passing in and out of consciousness while vomiting and d-ing everywhere. I thought that I was going to die, I was sweating profusely and felt like I was going to explode. I hated that I was alone, that men were definately not allowed in the women's washroom so I knew no one could come and get me. It was the worst experience of my life and I hate talking about it (this is the first time I've shared it).

I came out of the bathroom about 30 mins later, and I burst into tears when I was telling dad what had happened. Of course, my relatives wanted to keep shopping (they didn't know how bad it was) so I told them I'd meet them downstairs and if they couldn't find me, I was either in an alley or I found a bathroom. I couldn't stand to be so far up in the centre, and I needed air.

But that's not all yet!

Wouldn't you know it - we were just about to embark on a 4 hour non-stop car trip north to my fathers house - but not before I had to get them to stop the car on the side of the freeway so I could lie on the pavement and breathe through it. Luckily I didn't throw up anymore, but I laid very very still on the way home in the passenger seat and when we arrived 3 hours later (they drove FAST), I slept for 20 hours straight. No joke!

I didn't eat for 3 days after, and for the rest of the time on our holiday I could only drink water and eat fruit. I put it down to dehydration, which is probably true, but the way you eat over there - there is nothing without wheat & fried things morning, noon and night (and even later that night, earlier that morning, whenever!). During that last week, it was scary because in that area, food is everything and you must eat everything to avoid hurting someone's feelings (strange I know). Looking back now, I don't think there was anything I could of done to fix a food allergy over there. It's unheard of.

We flew back into Sydney (home, 10 days later), I was crying in relief when we went through customs - and that my brother had come to pick us up. I wasn't looking forward to waiting 3 hours in the taxi line with all our luggage, while I still felt all those symptoms.

There was only 1 other time that came close to that - and it was in a mall when I was trying on a coat with my sister, and I passed out in the clothes rack very suddenly. Security had to come and help me to my car, my sister had to drive me to the doc, who said it was 'nothing'. I wish I had noted down what I ate that morning, but it was years ago now.

I never made the connection between gluten and these incidents and doctors NEVER mentioned it - but going through all this now, and reading all your stories, at least now I can try to avoid it happening again...

Thanks for letting me vent xxx

Guest AutumnE

This was before celiac diagnosis. I was coming home from an out of state funeral with my mom, dad, sister, and myself. It was two weeks after 9/11.

We were out in the middle of nowhere in missouri. It took about 15 minutes to find a mcdonalds, ran in used it and as I was coming out of the bathroom I see a teenager girl coming for the bathroom. It was really stinky in there and she came out immediately and announced to the whole restaurant as Im leaving out the door how my bombing put osama bin laden to shame :ph34r: The only comfort I had was I knew I would never see any of those people again. I was soooo embarassed.

Jestgar Rising Star
It was really stinky in there and she came out immediately and announced to the whole restaurant as Im leaving out the door how my bombing put osama bin laden to shame

I'm pretty sure that if you were a man you'd have this statement framed and put on your "achievements" wall in the living room.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient
I'm pretty sure that if you were a man you'd have this statement framed and put on your "achievements" wall in the living room.

Oh my gosh--that is so true :lol:

Marlene Contributor

There have been times I had to leave my shopping cart in the middle of the grocery store and go home. It's also amazing that I haven't been in any accidents and/or pulled over by the police driving 100 mph trying to make it home. The worst time was when my husband and I went away for a romantic weekend to Niagara Falls. We ate supper up in the Skylon Tower and then afterwards were strolling along by the falls waiting to see them with the lights. Suddenly the cramping etc hit me and I found a bathroom in a gift shop. I went in and out of that bathroom about 3 times in the next 20 minutes. I thought I was done so we kept walking. Then suddenly it hit again and I said to my husband "Oh NO, I have to go again"... this was followed by "Nevermind, I just did." Yup, right there in my pants. I was mortified. I just stood there on the sidewalk while he went all the way back to the parking lot to find the car. There I was not daring to move while all these nice people walk past me and smiled courteously and I'm thinking to myself "If only you knew why I'm standing here!!" So, hubby gets car and drives right past me, noticed afterwards, had to turn around and finally I got in the car. I kind of sat on the side of my one bum cheek and that's how we drove to the hotel. I stank up our entire hotel room. How's that for romance? I asked my husband later how he managed to drive past me and he said "I didn't recognize you with those brown streaks running down your legs" :lol::lol: For the longest time I made him swear not to tell anyone but now I see the humour in it and even end up laughing myself. Hopefully those days are over!!

Marlene

jennyj Collaborator

I am glad that I am not the only person who has had "the grumblings" and knew that I had to go now. I try to eat light before a road trip now but before my dx I had several times when I would have to beg my dh to stop for me. At the time his "you just went" or "we only have 5 miles to go" would not help make the situation any better. Now he knows when I say I have to go, I have to go. My worst times though almost always happened during church services. You would have 100 sets of eyes watching you get up to go potty like the other under 5 year olds. One time I found one of the out of the way bathrooms and when I was done I walked out the door and right into one of the sweetest little old ladies in our congragation. She smiled and said hi but you could see her wrinkled nose.

L.A. Contributor

...at the cottage, opening weekend before the indoor plumbing was up and running--got real familiar with the outhouse :blink:

Guest AutumnE
I'm pretty sure that if you were a man you'd have this statement framed and put on your "achievements" wall in the living room.

Ha :D That is the truth!

I am glad that I am not the only person who has had "the grumblings" and knew that I had to go now.

That is one of my first signs, dh always knows too now. Within 10 minutes or so of glutening every time I move and bend I fart.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.