Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Anxiously Anticipating Side Effects Of First Real Glutening In 29 Months

Raywuwei

By Raywuwei
in Coping with Celiac Disease

Recommended Posts

Raywuwei Explorer
Raywuwei
Posted

I have been gluten free post dx for 29 months. In this time I have had some weird instances of vomiting, mostly after making poor food choices while drinking, but I can never quite say what the culprit was. It would always be a cross contamination issue because I NEVER straight up eat gluten. 

 

But tonight I was eating pumpkin talenti ice cream with my family (after they meticulously prepared a dinner I would be sage to eat) when I encountered a chunk of pie crust. I had bitten right into it but not swallowed. My eyes darted over to the ice cream container and I saw it said "pumpkin pie" flavor. I panicked and spit everything out. I went to the bathroom to brush my teeth and seriously contemplated throwing up. But I didn't. 

 

I already suffer from anxiety, and because this was my first time ever really eating gluten (you know that the rest of that ice cream I ate was not safe if it is made with pie crust chunks) I didn't know what was going to happen. I took a half of an anti-anxiety pill and now I am trying to not think of what might happen. It has been about an two hours and so far nothing strange has happened. 

 

The frustrating thing is I have only been at my current job for three weeks and I have already called in sick for a celiac related issue. I told my manager it was a "complication of my celiac" because I didn't know how to say "I have an anal fissure from a horrible bout of constipation, which was caused by my inability to keep a healthy diet while underemployed." So, I have already called in sick once and I am afraid I will have to again tomorrow, and that they might think I am lying or using this dx as an excuse. 

 

How did you all get through that first encounter with, "Oh f$#%, I just ate a bunch of gluten and I have no idea how my body is going to react!"
 

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

Celiac.com Sponsor (A8-M):


Raywuwei Explorer
Raywuwei
Posted
  • Author

Pretty disappointed to not have any feedback on this. Though I have an update: I have not had any symptoms yet. This is almost more disconcerting than what I was afraid of going through. I have spent the last 2.5 years avoiding even the most microscopic amounts of gluten like it is the plague. And last night I ate it. I had a chunk of pice crust in my mouth for a good 10 seconds. And NOTHING has happened? I know I have celiac. How is this possible?

BlessedMommy Rising Star
BlessedMommy
Posted

Glutening is such a variable thing. 

 

There's some celiacs who get no symptoms at all after glutening.

 

I'm glad that you're not sick!

1desperateladysaved Proficient
1desperateladysaved
Posted

Did you check the label on the ice cream?  It seems to me a regular gluten crust would not be palatable in ice cream.  Instead of crispy it would be soggy.  I think you just had everyone holding their breath!  Possibly it didn't actually have gluten, or somehow you didn't ingest any.  I hope you will be able to go to work and the boss will never need to know about it.

 

Dee

kareng Grand Master
kareng
Posted

I think you might not have gotten a lot of answers because for most of us you asked the question in the middle of the night?  We don't knowingly eat bites of gluten?

 

 If it didn't list wheat on the ingredients when you read them, maybe the crust was made with rice flour?

 

It seems that for most people (from reading experiences on this site) that they don't feel the effects of gluten for 6-24 hours.  So maybe you haven't hit it yet?  Maybe you got lucky and didn't actually swallow much and it swam by, unnoticed?  Who knows?  Next time you might not be so lucky....so remember the firs rule rule of Celiac Club:  "If you don't know the ingredients - don't eat it!"   :)

BlessedMommy Rising Star
BlessedMommy
Posted

I checked Talenti's website and the majority of their flavors are gluten free, but I couldn't find the pumpkin pie one listed on there.

julissa Explorer
julissa
Posted

I hope you are still feeling ok and will continue to do so. it's a crap shoot, hoping you dodged the bullet. 

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

holidays = mine field.....

 

part of the pumpkin spice overload season.  why would you put *pie crust* in gelato - and why anyone would eat any other flavor besides sea salt and caramel is beyond me it is da bomb dot com

 

nick%2Btalenti%2Bpumpkin%2Bpie%2Bgelato%

Solandra Rookie
Solandra
Posted

I think you're freaking yourself out. You spit it out. I have anxiety, too, so I understand that we can go full on hypochondriac.. which is what I think you're doing. I think a lot of Celiac people freak themselves out, though. Sometimes, stomachs just get upset from other things, but everyone always assumes they got glutened. Just relax, and remind yourself that worrying about something doesn't actually help.. you'll probably make yourself sicker from worrying than the tiny spec of gluten will.

 

Also, I don't get sick at all from eating it.. I'm pretty asymptomatic, digestively. My symptoms have pretty much been mild neurological ones and vitamin deficiencies.

Raywuwei Explorer
Raywuwei
Posted
  • Author

I'm sure most people were sleeping, I was just freaking out... Thanks for your support!

Raywuwei Explorer
Raywuwei
Posted
  • Author

Also, I don't get sick at all from eating it.. I'm pretty asymptomatic, digestively. My symptoms have pretty much been mild neurological ones and vitamin deficiencies.

Is that frustrating for you? I feel like if I am asymptomatic then it will be harder to know if I am eating properly, and harder to explain to people why I have to be so freakishly strict about avoiding gluten...

Solandra Rookie
Solandra
Posted

Yeah, it's pretty annoying, but I just remind myself that it can cause long term neurological issues as well as osteoporosis. Most doctors don't even know that, they just think it gives you a stomach ache and that's it.

nvsmom Community Regular
nvsmom
Posted

I didn't get sick every time I ate gluten before diagnosis, so I doubt I would feel it every time I got glutened (which is rare).  The last time I glutened myself it was repeatedly in small amounts (on french fries which label I did not read) over a few weeks.  I would eat a fry or two off my kids' plates.  I slowly felt ill over time until it became bad enough that I figured it out.  

 

Maybe you got lucky or maybe you need a larger amount in your system for your body to punish you for it.  Think or gluten like arsenic - a little won't kill you (just makes you a bit sick) but you'll be in big trouble if you eat a lot.

 

...And for the newbies out there, I am NOT saying it is okay to eat a little gluten once in a while, just that the small amount of gluten may not have created an obvious symptom.  Even if you aren't feeling it, the antibodies are still damaging your health.

 

Hope you stay well.

SMRI Collaborator
SMRI
Posted

You didn't actually swallow the crust that may or may not have had gluten in it.  10 seconds in your mouth, spitting it out and then brushing your teeth was probably good enough to not actually get gluten into your system to get it into your stomach to then move to your intestines where it could cause damage or a reaction.  I think you will be fine.

rrmac Apprentice
rrmac
Posted

I think you're freaking yourself out. You spit it out. I have anxiety, too, so I understand that we can go full on hypochondriac.. which is what I think you're doing. I think a lot of Celiac people freak themselves out, though. Sometimes, stomachs just get upset from other things, but everyone always assumes they got glutened. Just relax, and remind yourself that worrying about something doesn't actually help.. you'll probably make yourself sicker from worrying than the tiny spec of gluten will.

 

Also, I don't get sick at all from eating it.. I'm pretty asymptomatic, digestively. My symptoms have pretty much been mild neurological ones and vitamin deficiencies.

HI Solandra

Can you tell me about your Neuro side effects, I'm new here and there is so much to learn the more I read the more questions I have.

right now I have really bad sciatica  down my right leg and all my pain relivers contain gluten can't wait to get to target.

thanks Diane

Archived

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

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


  • Member Statistics

    • Total Members
      126,216
    • Most Online (within 30 mins)
      7,748
    cboling
    Newest Member
    cboling
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      @Milarynn,  Welcome to the forum!   Many undiagnosed, untreated Celiac Disease patients have vitamin and mineral deficiencies.  Be sure to have your Vitamin D level checked.  Vitamin D helps prevent bone loss, including loss from the jaw and teeth.   Magnesium and calcium are both important to bone health as well.  Magnesium helps keep the calcium from leaving your bones.  Magnesium helps make life sustaining enzymes with Thiamine Vitamin B1.  Low Magnesium and/or low Thiamine results in muscle cramping.   Thiamine deficiency is found in Pre-diabetes and Diabetes.  Poor absorption of the eight water soluble B vitamins and Vitamin C are found in Celiac Disease.  Insufficient Vitamin C can cause poor oral health, resulting in poor gum health such as receding and bleeding gums.  Vitamin C is needed to fight bacteria that cause plaque which causes cavities.  Vitamin C helps rebuild tooth enamel.   I've had jaw muscle cramping, TMJ problems, tooth loss and gum problems.  Do talk to your dentist about having Celiac Disease.  Practice good oral hygiene.  I'm also Diabetic and take Benfotiamine (a form of Thiamine) that helps regulate blood glucose and heal the intestines. Do keep us posted on your test results and your progress!
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Milaryrnn, your post is confusing. First, your celiac disease antibody testing is negative. By any chance had you already been on a gluten free diet before the blood draw for these tests was done? That would result in negative antibody testing even if you had celiac disease. Or, had you previously been diagnosed with celiac disease and had the antibody testing done to check for compliance with the gluten free diet? Second, DNA testing cannot be used to confirm celiac disease. 40% of the general population has the genetic potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. It takes both the genetic potential and some triggering biological stress event in order to develop active celiac disease. Otherwise, the genes remain inactive. High lipase levels would indicate some problem with your pancreas. 
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.
    • Milarynn
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Milarynn · Posted

      Hello. I recently had an endo/colonoscopy and my GI Dr found lymphocytes in my stomach and small intestine. My TTG Ab, IgA was <2 (normal), GLIADIN (DEAMINATED) IGA at 5 (negative), and IgA at 237 (normal). However, a Lipase test revealed my levels were through the roof at 201, 3x above normal. My GI doctor ordered a dna test to confirm Celiac Disease. An A1C test was also done and I am pre-diabetic. When I got home from work today, I started to feel sever cramping in my jaw muscles. I started to have jaw muscle cramps in the the last year. Not to mention, even with good oral hygiene, I have rapidly developed periodontal disease. I did have a small amount of gluten, thinking it wouldn’t harm much but I was sadly mistaken. DNA results should be back in 2 weeks. 
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
×
×
  • Create New...