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

Odd Neuro Symptoms After Getting Cc'd?


saintmaybe

Recommended Posts

saintmaybe Collaborator

I got my worst cross contamination yesterday by far since I've gone gluten free, and I haven't yet narrowed down the culprit. My question is about neuro symptoms:

Someone who doesn't know I'm celiac in the slightest noticed I had a drugged out affect last night, and also that I had widely dilated pupils. I also had a raging migraine (which is more normal for me) and excessive sleepiness. On top of the average gastro and joint symptoms, is this normal for anyone else on the board? Have you noticed this before in yourself or in another celiac you know? It kind of scared me that there was THAT much of a neurological impairment. I felt high/drunk/stoned. And apparently looked it too. :angry:


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I had that in the beginning while I still had a DH rash, and still on powerful antihistimines. And corticosteroids....forget it. I was stroking the furry wall.

Rice Works chips brought on a bad episode of being stoned/panicked - along with a DH flare. For a WEEK.

The last time I felt gluteny was Lays chips that were probably cc'd from gluteny hands...racing heart, nausea, confusion...no DH thank goodness. It subsided after chicken noodle soup, charcoal tabs, and sleep.

ravenwoodglass Mentor

Yea it is normal for me also. I get depressed, severely, sometimes one eyelid will droop along with some difficulty with balance, speech etc. For me I get more of a 'speed' effect at first and bounce off the walls and then will be more sleepy and tired than normal a couple days later. Not everyone will get neuro effects but it isn't unusual.

CR5442 Contributor

I'm so glad you posted this. These are the exact same symptoms I used to get on gluten. Everyone would think I was completely drunk/stoned, when I would start to feel wierd after say a pizza and one glass of wine. So far I think I have only had a mild CC/glutening. Hope you find the source of yours. It must have been scary to have someone else point it out to you though.

IrishHeart Veteran

ah yesss!!!...the stoner gluten head :blink: ....my first tell-take sign I've been glutened. Then, it's a week's worth of crap symptoms like anxiety, dizziness, nausea, depression, palpitations, ramped-up joint/bone/muscle pain, increased burning nerve pain, unable to articulate clearly and the ever-popular brain fog. (um, what's today? how do I make dinner, again?) Frightening and maddening, isn't it!!!arrgh I feel like I am on SPEED. never sleepy. Throw in some crying spells and agitation and a few nights of insomnia, some wicked abdominal pain and constipation reverting to the big D ....and well, it's just so much fun!

A week. Then again, before my DX, I lived like that every damn day for 3 years, so the accidental CC glutening is at least OVER in time. I was so bad on gluten at one point, I felt like I was "tripping' or hallucinating, hearing and seeing things. My head swam with tinnitis and pulsing, causing migraines. I never told that hallucinating part to anyone--not even my sweet hubby--until I talked to some other people on here and read about the many neuro symptoms of celiac and they told me it happened to them too.

Then all of it made sense, all my weird symptoms!---even the horrible nightmares that woke me up screaming. It really affected my brain function and scared the hell out of me. I wondered if I would go mad. I hung on for dear life.

But I did NOT go mad (whew!) and my brain is pretty clear now. ;) I even avoid the baking aisle in the supermarket as I have been known to get light-headed there....wtf is up with that? airborne gluten can do it , too?? yikes.

I have often wondered how much "dementia" and Alzheimer's is actually gluten toxicity...

Gluten = Poison.

saintmaybe Collaborator

I had that in the beginning while I still had a DH rash, and still on powerful antihistimines. And corticosteroids....forget it. I was stroking the furry wall.

Rice Works chips brought on a bad episode of being stoned/panicked - along with a DH flare. For a WEEK.

The last time I felt gluteny was Lays chips that were probably cc'd from gluteny hands...racing heart, nausea, confusion...no DH thank goodness. It subsided after chicken noodle soup, charcoal tabs, and sleep.

Lol, stroking the furry wall. *Sigh* My shopping list is getting ever longer. Charcoal tabs, glucosamine, etc. This disease is freakin expensive!

saintmaybe Collaborator

ah yesss!!!...the stoner gluten head :blink: ....my first tell-take sign I've been glutened. Then, it's a week's worth of crap symptoms like anxiety, dizziness, nausea, depression, palpitations, ramped-up joint/bone/muscle pain, increased burning nerve pain, unable to articulate clearly and the ever-popular brain fog. (um, what's today? how do I make dinner, again?) Frightening and maddening, isn't it!!!arrgh I feel like I am on SPEED. never sleepy. Throw in some crying spells and agitation and a few nights of insomnia, some wicked abdominal pain and constipation reverting to the big D ....and well, it's just so much fun!

A week. Then again, before my DX, I lived like that every damn day for 3 years, so the accidental CC glutening is at least OVER in time. I was so bad on gluten at one point, I felt like I was "tripping' or hallucinating, hearing and seeing things. My head swam with tinnitis and pulsing, causing migraines. I never told that hallucinating part to anyone--not even my sweet hubby--until I talked to some other people on here and read about the many neuro symptoms of celiac and they told me it happened to them too.

Then all of it made sense, all my weird symptoms!---even the horrible nightmares that woke me up screaming. It really affected my brain function and scared the hell out of me. I wondered if I would go mad. I hung on for dear life.

But I did NOT go mad (whew!) and my brain is pretty clear now. ;) I even avoid the baking aisle in the supermarket as I have been known to get light-headed there....wtf is up with that? airborne gluten can do it , too?? yikes.

I have often wondered how much "dementia" and Alzheimer's is actually gluten toxicity...

Gluten = Poison.

I HATE going back to foggy brain, after finally have it clear up! So not fair! *Stamps foot* I have loved every second of getting my brain back, so the neuro impairment I think is really the worst part of it for me. Sorry for the short responses, lovelies, still stoned. You know how it is. *sigh*


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



Celiac.com Sponsor (A8-M):



saintmaybe Collaborator

I'm so glad you posted this. These are the exact same symptoms I used to get on gluten. Everyone would think I was completely drunk/stoned, when I would start to feel wierd after say a pizza and one glass of wine. So far I think I have only had a mild CC/glutening. Hope you find the source of yours. It must have been scary to have someone else point it out to you though.

Well, I won't say GOOD, but I'm glad I'm not alone. And I was a little taken aback that a stranger, pretty much, pointed it out to me.

saintmaybe Collaborator

Yea it is normal for me also. I get depressed, severely, sometimes one eyelid will droop along with some difficulty with balance, speech etc. For me I get more of a 'speed' effect at first and bounce off the walls and then will be more sleepy and tired than normal a couple days later. Not everyone will get neuro effects but it isn't unusual.

Yeah, I get the balance issues too. My ataxia hasn't even begun to clear up, but it's only been a month. I hear that's one of the slowest issues to resolve, if it ever does.

IrishHeart Veteran

Balance issues cleared up pretty quickly for me...it's the bone/joint/muscle/nerve pain that is still a bee --yutch. :angry: Nerve pain takes the longest-or so my doc and so many of the journal articles claim...we'll see. I choose to believe it will all go away. ;)

Everyone heals at different rates.

Hang in there, kiddo....you're gonna "clear out".

You take care!! HYDRATE--lots of water!! ;)

YoloGx Rookie

Unless you have salicylate problems (like I do) I hear that taking charcoal capsules for a day or two really helps shorten the CC glutening episode. As well as drinking lots of water, taking acidophilus etc. I suggested it to a friend and it really helped him. Instead of suffering for weeks as he so often does, it shortened his symptoms down to a day.

Both my boyfriend and I get the same neuro symptoms as you. Its one thing I recognized in my boyfriend actually before we got together. He came over to help me put together a chapbook for a friend of ours and I noticed his left eye was all swollen and he was acting a little tipsy. He was having a migraine and pretending to be cheerful since it was so normal for him...I told him I knew better.

IrishHeart Veteran

Well, now that's 2 of you to suggest charcoal post-glutening episodes. I know some people take charcoal for excessive gas (celiac or not) and so, maybe I will get some capsules to have on hand if/when the next accidental CC occurs. Maybe it will speed up the recovery. Losing a week is rough.

The one caveat is: Once it is in the system, charcoal absorbs everything in sight--vitamins, nutrients, and chemical medications inluded. Should be taken separately from meals and meds and should be used SPARINGLY. May cause constipation as well (from Natural Stomach Care by Anil Minocha, MD)

glutout Rookie

Yes, I feel drunk too when this happens to me, really punch drunk....I get lethargic, depressed, anxious and cannot even begin to think straight!!! :blink:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,345
    • Most Online (within 30 mins)
      7,748

    Louise Sullivan
    Newest Member
    Louise Sullivan
    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

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...