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

Misery In Need Of Company. Worst Place You Have Been Glutened In? Please Share!

MitziG

By MitziG
in Coping with Celiac Disease

Recommended Posts

MitziG Enthusiast
MitziG
Posted

I have not posted in some time, but today am finding myself in need of support. Yesterday was my husband's company party, a beautiful dinner at a local winery. Out of consideration for me, his region manager had specifically requested the caterer to prepare several gluten free items. Since I have never even met the man, and he only knew about my celiac dx from a conversation with my husband some time ago, I was very appreciative.

Despite the effort being made, I still grilled the caterer myself regarding preparation. Since she had made everything herself, she was very informative of exactly what went into the meal. I was however, a bit careless. I did not ask her about cross contamination...did she use the same spoon as in other dishes, etc. I knew I should, but I was too self conscious, especially since thy had already gone out of their way for me. How would it look if I refused to eat the prime rib because I found out she had used a basting brush that had previously been used on gluten? So, I took a chance.

So, so stupid. I react pretty quickly to gluten, and there is no mistaking when I have been hit. It is a distinct sensation. 20 minutes after eating and I was running for he bathroom.

Except this SMALL winery has only one bathroom. Which is ten feet from the table where everyone is seated. And I am in there for an hour, sweating and cramping and desperately wanting to vomit and get it over with. And I KNOW they can hear everything. Of course when I come out, everyone notices, and there is no discreet way for my husband and I to slip out. I know I am not done yet, and am just desperate to be in any bathroom but this one. Meanwhile, a few people who apparently DIDN'T notice what was going on are trying to make small talk wih me as I fumble with my coat and try not to pass out while I am standing there, signaling my husband for the keys. Finally I get his attention and gasp about something about how I am sorry but I have to leave because I am sick. But trying to speak loud enough for them to hear, while not being so loud as to alert the whole table is difficult, so I finally just dash past everyone and head for the door. My husband offers brief apologies and finally comes out, takes me to a nearby McDonalds which at least has two stalls so I can monopolize the bathroom for another two hours.

I am beyond mortified. I know I made a scene, I can just imagine what his manager must be feeling, and I am pretty sure some people think I am just a stuck up snob because I was pretty much ignoring everyone in my effort to not poop my pants while at the table.

In three years I have had some bad glutenings, but always around friends who knew and understood for the most part. (Save for the amusement park where I laid on the dirty bathroom floor next to the toilet for an hour. Yuck.)

This time though...it just sucks. I hate having this stupid disease that makes the simplest things so complicated. I hate drawing attention to myself and feeling like everyone just hunks I WANT the attention. If I don't eat, it draws attention. If I bring my own food, it draws attention. If I make inquiries regarding the food and its preparation I look demanding.

I appreciate that I have much better health now than before my diagnosis. And I know there are far worse conditions to have. But today I am in full on feeling sorry for myself mode. The only other people in the world who can REALLY understand are right here.

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

((((((HUGS))))))

 

 

I'm so sorry you had to go through this. I know nothing I can say will make you feel better, but if it could, I would say it so you got over the glutening AND the embarassment immediately.

mamaw Community Regular
mamaw
Posted

hope  things pass quickly ( no pun intended)....... a  suggestion  would be  to take gluten ease  or  something  similar  before  going out to  any function  that  you don't know  for sure   about  CC...it  will not  stop  the  reaction but  may help ease  the  reaction some...I've  been glutened by  a  family  member  for  my 60 th  b-day celebration.....will never  forget  it.... eleven years  &  one  nasty  gluten....

 

At least  the  boss  tried to accommodate...but  again  if  a person  knows  nothing  about this  then  how  would they be  able to  understand CC  and  all that  goes  along  with  it.... maybe  if there is  a  next  time , you could  contact  the  chef  before  hand & make a game  plan....once  I played  sick  when I arrived  ( migraine) , picked  at a  salad   &  left  the  other food  on the  plate moved  around.... I did  eat  before  I attended .... just  a little white  fib  that  usually works.....better  than a full blown  attack....

 

hugs

MitziG Enthusiast
MitziG
Posted
  • Author

Thank you, I appreciate the sympathy! I did have nausea meds with me (phenergan) the kids and I carry it at all times. For whatever reason, it did not work though. It was a new bottle and I swear the manufacturer left out the active ingredient. I always get a fuzzy out of it feeling from a single pill, and the pills always taste wretched. This batch had NO taste, and I was so desperate for relief I took four pills..

and still no relief, and no fuzzy feeling.

I do need to look into the Gluten Ease. Having rx nausea meds always at hand has made me much more brave about taking a risk by eating out, but I would live to have something else in my arsenal as well!

moosemalibu Collaborator
moosemalibu
Posted

I am so so sorry!! That sounds horrible. I'm sure they were mostly just concerned for you and not annoyed by you monopolizing the bathroom.

 

 Here's my most awful location..

 

In the Rubicon trail up by Lake Tahoe where there is no bathroom and we are on our way out to go home from camping.. We are cruising and every few minutes I dash out with a roll of toilet paper in my hands and squat by a fallen tree and do my business. That happened OH SO MANY TIMES on our way out... and then we had to stop frequently once we got to the freeway so I could go. No toilet, no sink... just me in the woods with some toilet paper hoping no other trucks are nearby to witness the display. It was terrible. I was glutened by margarita mix. Sigh.. learned that one the hard way.

MitziG Enthusiast
MitziG
Posted
  • Author

@moosemalibu...wow! I have always dreaded having to do that- have come close a few times! Only another celiac can relate to what we go through! Thank you for joining my pity party!

1desperateladysaved Proficient
1desperateladysaved
Posted

My story isn't so bad compared to your "take the cake deal."  My torment kept me in the bathroom of my family's hotel room for nearly an entire evening.  They weren't more than five feet away from me and couldn't help hearing, I am sure.  It did seem to stop most of the idea of this just being in my head! I emerged from the bathroom a few times only to dash back in.  Somehow I finally managed to get down the hall to move the clothes to the dryer once, but rushed back  again.

 

D

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

Celiac.com Sponsor (A8-M):


Alwayssomething Contributor
Alwayssomething
Posted

Pre diagnosis - floating in an intertube down a natural river.  You jumped in with your tube at one point and the first pull out point was an hour down the river.   There was no possible way to get out of the river as the sides were all marsh and if you try to step onto the ground it was so deep a muck that is sucked your foot in.   I don't think we had been in the water 10 minutes when the pain started and there was nothing I could do.   People snorkle, swim and tube down.  It was horrible!  

Berlin1 Newbie
Berlin1
Posted

Oh god, I feel your pain  :unsure:. I do not have Celiac but a pretty nasty intolerance to gluten.  Even before I was diagnosed with this, there was a time where I had no idea what was going on with me. So many times I would go to University (about an hour away from home) and need to run out of class just to go to the bathroom. I never did puke but I would spend hours feeling like I could alongside pooping endlessly. The worst was when I moved over to Germany for the first time and met my husband's very German family. His mother cooks traditionally and German traditional food is heavy with wheat & dairy. At the time I had no idea about my problems with gluten. I can remember, she fed me a big fat breaded schnitzel with green cabbage and mashed potatoes. I felt the symptoms within 20 minutes and had no choice but to excuse myself. Ended up staying in the bathroom for the rest of the night and the next few days. Turns out I was not only intolerant to gluten but also lactose. 

For the longest time, his mother thought I hated her cooking. Lol, it's been a long rough road to teaching her that I actually had health issue. 

MitziG Enthusiast
MitziG
Posted
  • Author

@alwayssomething, your story made me laugh so hard! What an awful predicament you were in. Have to either laugh or cry, don't we?

moosemalibu Collaborator
moosemalibu
Posted

@moosemalibu...wow! I have always dreaded having to do that- have come close a few times! Only another celiac can relate to what we go through! Thank you for joining my pity party!

 

And that is why I love this community so much. We 'get it.' :)

LauraTX Rising Star
LauraTX
Posted

Last year on our anniversary we went out to eat and got food poisoning.  My husband was at work and was able to find a far away bathroom.  I was stuck at a medical office building in town that had one public women's bathroom with one stall, near the busy entrance.  I go in there and am sitting forever having the worst time and this old lady comes in and even though I am saying "Occupied!!!!!!" she is nearly breaking down the stall door.  I yell at her I am going to be here a long while she may want to find another place.  About 30 minutes and a few people who got the message quickly later... here is the same old lady beating down my door.  I say the same thing, and she starts yelling that she can't believe young people are so rude, etc. and she is an old woman who needs to use the bathroom.  So I yell "I HAVE DIARRHEA IT WONT STOP AND I CANT HELP IT! GO AWAY!"  and she finally left grumbling.  

 

Also one time my husband got sick and had to go sit on the toilet in a plane.  As soon as the plane landed he ran up there after suffering through the landing and not wanting them to think he was a terrorist storming the cockpit, and we were the last ones out.  I felt so bad for him.  

 

I guess I am lucky that any of my GI weirdness when glutened (mine is iffy and delayed and only sometimes) has hit at good times.  But I have only been at this a year or so, so I am sure it will catch up to me eventually!  Anyone grow up in a house with one bathroom and the whole house get sick? Fun times.

gilligan Enthusiast
gilligan
Posted

I have nothing to add to this, but I was glad to hear all of your responses.  I haven't been in that situation yet, but my greatest fear is that it will eventually happen.  So far, when I'm going to have a problem it starts with a rumbling in my stomach.  As soon as that starts, I know I need to head home, and I know I won't feel good in a few hours.  I hope it works out better for you next time you have dinner out.

MitziG Enthusiast
MitziG
Posted
  • Author

@lauratx, good for you! What on earth do you suppose she thought you were up to in there? Having coffee? My mom, also a celiac, offered me her tale of woe. She was at a business luncheon, occupying the only bathroom, and people were pounding on the door. She says it didn't matter because "I wasn't coming out and they weren't coming in!". @gilligan, lets cross our fingers and hope you never find out!

Alwayssomething Contributor
Alwayssomething
Posted

MitziG - You are so right, we do have to laugh, only after it is all over though!   I have many more where that came from, that was probably the worst.  I am also lactose intolerent and have had a few bad incidents with that pre diagnosis and well.

 

I can remember being at Epcot waiting to get on a ride and them announcing that there was no exit for 45 minutes, and me thinking, "no way, I am not taking that kind of chance" and getting out of line.   Now that I know what my issues are and  things are in my control (at least they are MOST of the time) I wouldn't hesitate to ride that ride.    

luvs2eat Collaborator
luvs2eat
Posted

These stories are exactly why I don't eat out anymore... almost NEVER. I'm so scared of what my last glutening did that I never want to repeat it... especially in public! I had LOADS of laundry before just stripping down and sitting naked on the toilet w/ the waste can in my lap after that one... it was awful.

Pegleg84 Collaborator
Pegleg84
Posted

ooh man... I have had a few "I was afraid you fell in" epic long sits on public cans before. It's not so much embarrassing that others might hear/know etc, but that you've left your friend/significant other waiting for god-knows how long. Also, my bathroom is in the basement of my apartment, and if you have to go in the middle of the night in the middle of the winter, it's FREEZING down there!

 

My worst incident was a very delayed reaction. After getting glutened over Christmas last year, and having a bit too much bubbly and etc at my boyfriend's friend's NYE party, so sick. SO SICK!! I rarely rarely vomit. I can actually count the times I've been sick after drinking on 2 hands, but it had never been this bad before, like I was heaving up my stomach lining or something. I'm pretty convinced that it would not have been so bad had I not been recovering from a confirmed glutening. NOT FUN! And it took me weeks to recover from it since my stomach was so raw after.

Bless his heart though, my man washed the dishes in his friends sink (I did manage to get to the sink first...) and helped me hover over the toilet... SO embarrased!

 

And of course, as though I have started a tradition, I had to purge after this year's NYE celebrations as well, though it was not nearly as nasty, and in the safely of my own house.

 

BLARGH!

 

Cheers guys.

MitziG Enthusiast
MitziG
Posted
  • Author

@luvstoeat, I keep making that same decision...and then I cave, because it is just no fun going out and not eating, or bringing my own boring food! But then, I should not be whining when something happens now, should I?

@pegleg84 When I started dating my husband at age 18 (and undiagnosed of course!) many of our dates ended with him holding my hair, or waiting outside the bathroom. That was how I knew he was a keeper! My parents were thrilled to finally have someone else sit up with me when I was sick, which was ALOT.

When a man cleans up your vomit, the same can probably be said. Better hang on to him!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.