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

Changes In Glutening

Corkdarrr

Recommended Posts

Corkdarrr Enthusiast
Corkdarrr
Posted

So I've been gluten-free for almost six months now. And when I started gluten-free, and I accidentally (or once or twice on purpose :rolleyes: ) ate gluten, I KNEW it. I knew it like the stomach flu for three days. It was intense. It was nasty. And it was immediate.

I went out to dinner last nite and about 30 minutes in, I was pretty sure I'd been glutened. Not severely since it was Thai food, but I had some serious stomach discomfort. I made it through the rest of the meal and got home.

I most definately didn't feel good - no D, but urgent and loose stools; stomach cramps; the urge to throw up...but the worst signs I noticed weren't stomach related. I was SO tired. Like someone had drugged me. But when I went to bed I couldnt' fall asleep - mostly becuase I was having some sort of crazy, heart-racing panic attack. I felt SO hot it was uncomfortable. And a little bit dizzy. And thirsty.

So I know all the things I've mentioned are typical glutening symptoms for someone, somewhere. But I guess I'm wondering if it's normal that they've evolved for me. It was so drastically stomach related when this all began that I've just been lying in wait...

Any thoughts?

Courtney

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

Celiac.com Sponsor (A8-M):


flagbabyds Collaborator
flagbabyds
Posted

it's very normal for your symptoms to evolve over your life. mine have changed frmo when i was a baby and now every glutening they are different but i can always tell in someway taht i have gotten gluten in some form. i dunno why it is like that but it is just your body's response and it c an change over hte years, months, or even days.

Corkdarrr Enthusiast
Corkdarrr
Posted
  • Author

Thanks, Molly.

Don't get me wrong - I prefer the whole *not* being violently ill thing to that the obviously there yet underlying discomfort. It's just weird.

I'm sad, too. That used to be my one safe restaurant to eat at. Now two times in a row I've gotten sick so they've obviously changed something in the kitchen from the previous 8 times I'd eaten there. Boo. :(

flagbabyds Collaborator
flagbabyds
Posted

my reactions have changed as i grew up. when i was a baby it was always D 24 hours after the exposure. Then i didn't get gluten all through elementary school but in 7th grade it caused mood swings and my thyroid levels to go dangerously low and create a whole mess of autoimmune disorders. now it causes nausea and that is stopped by taking fennergen casue i don't like to throw up... and gives me more food allergies (corn and soy now) and casues temp. lactose intolerance.

it's weird but it changes almost every time i get gluten.

marciab Enthusiast
marciab
Posted

I've noticed this in myself too. I used to get horrible cramps (911), "D" and at one point I had myoclonus and ataxia. But now when I am glutened I don't do this. But, I would never eat it intentionally. :blink:

The last time I was glutened (or I believe I was) I was awake until 6am. I wasn't hyper, I just did not feel sleepy. I even thought about going Christmas shopping at 3 am. By then I was bored ...

I have not had any severe myoclonus since August. And absolutely no ataxia since September. I am guessing that our bodies are healing and that is why our symptoms have changed.

Just my thoughts (on clearance today for 1/2 a penny) :lol: ... Marcia

Nancym Enthusiast
Nancym
Posted

I intentionally glutened myself after a year and a half gluten free, just to see what would happen. Nothing really obvious. Except a kind of lingering malaise, no energy, kind of depressed for over a week now. I didn't link it to the gluten at first but now I think it was.

marciab Enthusiast
marciab
Posted

OMG Nancy, you just explained why I felt sad this week. This is just so unlike me. Thanks .. marcia

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

Celiac.com Sponsor (A8-M):


Corkdarrr Enthusiast
Corkdarrr
Posted
  • Author

When I first went gluten-free I went through all the denial and just *had* to see what would happen.

Yuck! :blink: I learned my lesson. Plus the more I learn about all the different ways it affects my body and mind, I have no desire to cheat and test the fates anymore.

I definately seem to get more depressed when I've been glutened. I'm really sleepy. And clutzy and uncoordinated. I'm sure it's quite hilarious to the people around me! :P I don't feel well at all, but there's no D or vomiting. Just awful cramps, bloating and indigestion as far as digestive stuff goes. But, silver lining - At least I'm not holed up in the bathroom, curled in a ball next to the toilet!

Courtney

  • 2 weeks later...
CMCM Rising Star
CMCM
Posted

Courtney, I had to laugh at your comments on the dairy. Honestly, think I can mostly handle avoiding gluten, but the DAIRY....now that's a challenge. It's just in everything I like. It's really almost impossible to avoid. :(

Carole

When I first went gluten-free I went through all the denial and just *had* to see what would happen.

Yuck! :blink: I learned my lesson. Plus the more I learn about all the different ways it affects my body and mind, I have no desire to cheat and test the fates anymore.

I definately seem to get more depressed when I've been glutened. I'm really sleepy. And clutzy and uncoordinated. I'm sure it's quite hilarious to the people around me! :P I don't feel well at all, but there's no D or vomiting. Just awful cramps, bloating and indigestion as far as digestive stuff goes. But, silver lining - At least I'm not holed up in the bathroom, curled in a ball next to the toilet!

Courtney

emcmaster Collaborator
emcmaster
Posted

I've been gluten-free for 8-1/2 months and it definitely changed for me. When I first went gluten-free, my symptoms (severe bloating, nausea, lots of stomach pain) lasted about a week in duration and didn't get better until the last day. As I've healed, I still have the same symptoms, but sometimes one is missing (like I'll have nausea and pain but no bloating or vice versa). Also, they don't usually last a week anymore. (Except for right now - today marks the 6th day that I've been experiencing symptoms from a glutening and it doesn't seem to be getting better yet.) I think healing seems to make the symptoms different - at least it did for me.

E.

FeedIndy Contributor
FeedIndy
Posted

When DD was first diagnosed, she was tired all the time (she took 4 naps a day at 9 months!) and had mild constipation. After a month gluten free she would get D 24 hours after an accidental exposure. Now, it goes back and forth from D to C. It's very weird to me. Now that I'm not nursing, the accidental exposures are fewer and far between. I'm sure next time it will be a completely different reaction.

Now my other 2 daughters started the gluten free diet "by accident." They wanted to eat the cereal DD was eating and announced they were gluten free too. So I told them if they were going to eat her expensive cereal, they would do the diet all week. It was the most peaceful 5 days of my life! For the first time ever, the behavior issues we'd dealt with and seen psychologists for were just gone! Then we let them go back over Christmas. An hour after their first breakfast, they complained of stomach aches. DD1 had D all day. DD2 was constipated for 2 days. The behavior issues weren't as obvious because it was Christmas and we were around family so they were too wired for it all.

We went back to gluten free and the same thing happened after an accidental glutening last week. DD1 has stomach troubles, but DD2 is just plain mean when she gets a hold of wheat. I'm not planning to have them tested, but we'll allow another challenge or two just to prove to DD1 that it wasn't a coincidence. At 9, she wants the proof dh and I don't need, but hates needles and has agreed to find her proof in dietary response.

Archived

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

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


  • Member Statistics

    • Total Members
      132,118
    • Most Online (within 30 mins)
      7,748
    Cwbtex
    Newest Member
    Cwbtex
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Heat intolerant... Yikes

      By Colleen H · Posted

      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • 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.