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

Anybody Else Have These Neuro Symptoms?


Rpm999

Recommended Posts

Rpm999 Contributor

i see plenty of people say the basic neuro symptoms, but i have had some crazy ones since i've been sick

i've felt really strange, for example my thoughts, reactions, responses, it all seems really different...i know i have brain fog, but sometimes i have the a word right there but just can't get it out, i feel stuck, if that makes sense...it just feels like everything is floating around me, like i'm in a different world, i can't even remember how things normally feel and can't grasp things at all, whether i'm reading something, watching something, somebodys talking....it all floats by me, i can talk for HOURS and not remember one thing, or think of something to say and a second later forget it all....i try watching something, and the screen feels like it's bugged out....it's like i hear people say they had neuro and vision problems, but what about the really strange things, where it's almost impossible to even explain? somebody could give me a billion dollars right now and it wouldn't change how i feel, and i'm not even sad or depressed! i just feel like i don't know how to react to things anymore...it feels like things have no flow, if that makes any sense, like it's just one thing to another...like your head literally feels cluttered up with bits and pieces of things and even if you're focusing on something- your mind is still going a million miles and hour...it's not like people who are sad who can do something to take your mind off it, as i said before, it just constantly feels stuck

it's hard to explain like i said, but it feels like i'll never be myself, cause i literally feel like i went to another person, it all feels like a bad trip...but people on the outside don't understand, it's not cause i'm sad! i'm pretty optimistic actually, things just feel so OFF...maybe somebody can relate, could be a combo of things too since my bodies been through so much in this time and it all just seems like it could collapse

anyways, just wanting to see if anybody can relate- or understand some of the things i'm saying? it's just the strangest things, even my dreams are extremely weird, doing basic things doesn't feel right AT all, it just feels like a lot....and it effects you a lot too, because before i started getting sick, somebody could have got killed in front of me and i'd still be happy :lol: it was all just relaxed, flowing, everything made me happy...so it's a big switch feeling so sensitive to the randomest things, without actually being sad/mad...it's like a third person feeling to sum it all up, i don't even feel like i'm in my body...i probably sound crazy :lol: :lol:

have a nice day everyone! and i apologize for making anybody read that wall of babbling ;)


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Uh, yeah, I had all that! It's gotten better with my Lyme treatment .... I had gluten intolerance due to Lyme, so I can't tell you if someone with celiac is prone to that, but I sure had it BAD!! Exactly as you describe.

Rpm999 Contributor

i don't think i have lyme, but i'm sure celiac isn't the only thing i have...still waiting on a SMART doctor :lol:

but ah, it's so strange/complex isn't it! people look at you like your crazy sometimes when you try to explain, i know prior to this i would have too

CarlaB Enthusiast
still waiting on a SMART doctor :lol:

Good luck with that! My Lyme doc is GREAT, but all other doctors I went to were clueless.

You might want to check out this thread .... Open Original Shared Link

Have you been tested for celiac disease yet?

Rpm999 Contributor

supposedly

i got tested for lyme but a lot of my symptoms sound like it, i wonder if the test he did wasn't a good one or something...i have no clue

Nyxie63 Apprentice

Oh yeah. It's kinda like being on autopilot while having a chronic series of brain cramps. Suddenly there's a moment when things kind of sink in and its disconcerting, to say the least. A sudden awareness of "being". And then it goes back to the autopilot disassociative perceptions for awhile.

Regarding words.... that happens to me all the time. I can come up with what the object looks like, what it does, but not what it "is". For example, I'll ask hubby to grab a "clothes hangy-uppy thing" when the word I really want to say is "hanger". Can I think of it at the time? No.

At least he and I have both learned to get a few laughs out of it.

Dreams have been strange too. Ever have serial dreaming? That one weirds me out. Dreams that pick up when and/or where past dreams have left off. Bizarre. :huh:

Anyway, you're not the only one. Not sure there's comfort in that knowledge or not.

CarlaB Enthusiast
supposedly

i got tested for lyme but a lot of my symptoms sound like it, i wonder if the test he did wasn't a good one or something...i have no clue

Unless they sent it away to IGeneX in CA or another specialty lab, it wasn't a good one. :( Doctors don't want to diagnose Lyme Disease .... read through the thread .... there's a political battle surrounding it in the medical field.

The test most doctors use is 50% accurate ....

The other problem with Lyme testing is that there are a of false negatives, just like celiac.


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



Celiac.com Sponsor (A8-M):



MrMark Apprentice
i see plenty of people say the basic neuro symptoms, but i have had some crazy ones since i've been sick

i've felt really strange, for example my thoughts, reactions, responses, it all seems really different...i know i have brain fog, but sometimes i have the a word right there but just can't get it out, i feel stuck, if that makes sense...it just feels like everything is floating around me, like i'm in a different world, i can't even remember how things normally feel and can't grasp things at all, whether i'm reading something, watching something, somebodys talking....it all floats by me, i can talk for HOURS and not remember one thing, or think of something to say and a second later forget it all....i try watching something, and the screen feels like it's bugged out....it's like i hear people say they had neuro and vision problems, but what about the really strange things, where it's almost impossible to even explain? somebody could give me a billion dollars right now and it wouldn't change how i feel, and i'm not even sad or depressed! i just feel like i don't know how to react to things anymore...it feels like things have no flow, if that makes any sense, like it's just one thing to another...like your head literally feels cluttered up with bits and pieces of things and even if you're focusing on something- your mind is still going a million miles and hour...it's not like people who are sad who can do something to take your mind off it, as i said before, it just constantly feels stuck

it's hard to explain like i said, but it feels like i'll never be myself, cause i literally feel like i went to another person, it all feels like a bad trip...but people on the outside don't understand, it's not cause i'm sad! i'm pretty optimistic actually, things just feel so OFF...maybe somebody can relate, could be a combo of things too since my bodies been through so much in this time and it all just seems like it could collapse

anyways, just wanting to see if anybody can relate- or understand some of the things i'm saying? it's just the strangest things, even my dreams are extremely weird, doing basic things doesn't feel right AT all, it just feels like a lot....and it effects you a lot too, because before i started getting sick, somebody could have got killed in front of me and i'd still be happy :lol: it was all just relaxed, flowing, everything made me happy...so it's a big switch feeling so sensitive to the randomest things, without actually being sad/mad...it's like a third person feeling to sum it all up, i don't even feel like i'm in my body...i probably sound crazy :lol: :lol:

have a nice day everyone! and i apologize for making anybody read that wall of babbling ;)

Gluten caused me neurological issues, too. I used to be constantly told by everybody (family and co-workers): listen, focus, concentrate,the answer is right in front of you, pay attention, etc,,,. I always made mistakes doing the simplest of things both at work and home. Everybody, including myself, could depend on me making mistakes at work and home-that was horrible. Nothing ever made sense to me. My short term memory used to be nil. I often felt like my brain wasn't really in charge of my body, more like it was along for a free ride (impossible to explain). I could detect (and totally fixate) the slightest distractions, like a car idling a block away or an insect pounding on a window trying to escape the house. I really started worrying when I began to lose long term memories (thats what defines us). Most people don't have a clue and their comments turn into a personal attack, which exacerbates our problems. Going gluten and lactose free has resolved a lot of these problems. If I get exposed to gluten or milk, many of these bad things return.

I'm a newbie here, but it sounds like you are still being exposed to gluten or some other allergen (you should ask your Dr sooner than later).

You are not alone going through this! The reason you are using this website is the same reason I love it. It is a place where we can be understood and seek help, as most people in our daily lives cannot begin to understand our problems.

Rpm999 Contributor
Unless they sent it away to IGeneX in CA or another specialty lab, it wasn't a good one. :( Doctors don't want to diagnose Lyme Disease .... read through the thread .... there's a political battle surrounding it in the medical field.

The test most doctors use is 50% accurate ....

The other problem with Lyme testing is that there are a of false negatives, just like celiac.

so you contact that company, they send you it, and you see a lyme specalist? hopefully there's one here...but nobody else can diagnose that test? i mean it HAS to be a LYME SPECALIST, right? hopefully there's one around here...what's the deal with double negatives though? =\

Rpm999 Contributor

also

Open Original Shared Link

would that be a possible specialist? i'd be nice since it's near by

CarlaB Enthusiast
also

Open Original Shared Link

would that be a possible specialist? i'd be nice since it's near by

It doesn't sound like it .... they specifically say 'early Lyme Disease'.

You might want to check out Lame Advertisement under seeking doctors to find one near you. :)

tom Contributor

I called it 'living in 3rd person'.

Sometimes it was as if some sort of momentum was responsible for every action or activity. It wasn't me.

It starts to come back if I have much milk.

So I haven't had any cow's milk in quite a while.

Maybe it's as simple as another weird food intolerance, and that simple to fix.

If you don't already keep a food/symptom diary, you might want to try it. ;)

nora-n Rookie

On the autism websites they often they cite the work of Karl Ludwig rechelt, who did a lot of work on opioids and gluten/casein. these are protein sequences that have opioid activity is ome people ,like autists. You can google reichelt or Kalle Reichelt or Karl Ludwig reichelt. There is even a test for those opioids. Maybe that is the problem in some people not tolerating gluten and milk.

Open Original Shared Link Don Wiss has several pages on it.

Open Original Shared Link

nora

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.