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Odd Neuro Symptoms After Getting Cc'd?


saintmaybe

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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:


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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*


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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:

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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