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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748

    KittyKatJill
    Newest Member
    KittyKatJill
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.