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

Mental/neuro Symptoms

Rpm999

Recommended Posts

Rpm999 Contributor
Rpm999
Posted

at first i thought i had celiac, but i didn't take it serious and look into things...i started to think maybe it was just bothering me because of other issues, because of how many symptoms i have going on, but i realized it's most likely a big thing and really seeing how the diet goes

i wanted to know though, has anybody ever had severe mental/neuro symptoms where it feels like you don't know how to react to things? i feel like all my basic skills/reactions are just so off, nothing really feels right and some things you can't even explain...if i'm walking, if feels like my head is just frozen there and my body is just going along with it, it's hard to explain but it feels like everything feels the same

basically like, my brain feels frozen...everything feels the same and everything feels like something, somebody could give me a billion dollars and i just wouldn't know how to react

if i'm reading/hear something, it just won't sink in and flies right by and that's scary to me...i hear people say neuro/mental things all the time, but has anybody had strange crippling things like THAT? some of it is just so strange, but nothing feels right in any way and i just feel like a zombie, my sense of time, place, being...it all feels gone...i can talk for hours, yet not even know what i'm talking about and it feels like an etch-a-sketch...if there's two noises at once, it feels like my heads going to explain, even the other type of senses- hearing and vision, just feel very off...i look at something and don't even know if that's how it's supposed to look

i made a topic like this before, and i'm looking into other things too but i'm wondering....say celiac was a big issue, are things like that POSSIBLE with celiac? is there anything CAUSED by celiac, or any levels that could be off to cause things like that? i feel like i have no direction

for awhile, i thought maybe i had a gluten intolerance because of lyme or something but i don't even know if i have lyme, and i doubt it...starting to think it's the other way around and celiac could be the big issue, but those things i say seem so out there and different that i always thought that celiac couldn't cause things like that, but hopefully there's some insight on that...it's just so deep and hard to explain :(

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

It sounds like you are experiencing what many on this board call "brain fog". It can be quite disorienting, frustrating, etc. I and many others have found various supplements can work wonders in many ways. I cannot begin to explain how valuable magnesium has been for me, and a sublingual B12 too.

Also many report feeling much better with a B-complex and/or multi-vitamin.

HTH

fedora Enthusiast
fedora
Posted

hi,

I wanted to let you know you are not alone. Although people may have varying neuro/mental symptoms, they do occur and are real. It could be antibodies attacking the nervous system, or vitamin or mineral deficiency. In my life (but not all at once or every day)I have had severe PMS, mild bipolar behavior, depression, getting stoned out of nowhere, inability to talk without thinking really hard, difficulty thinking, sensitivity to noise, anxiety, vision changes at times, nightmares, obsessive behavior... The weirdest one ,I am realizing ,was when I was really sick as a kid. I was convinced that armagedden was coming(no one around me thought this or talked like this). When I got better, this very fear based extreme worry went away! I also would "black out" and have adventures without my body. This also stopped when I got better. Totally crazy I know.

The good news is the miracle that being gluten free has made in my life. Every one of those symptoms has gone away completely or subsided greatly.

If you gave more info, it would be more helpful. Are you glutten free, how long/ It important to determine what is causing this. Lyme's can cause neuro problems too. There is a lymes thread on here. Have you been tested for either?

hope you heal soon

tom Contributor
tom
Posted
i wanted to know though, has anybody ever had severe mental/neuro symptoms where it feels like you don't know how to react to things?

Yup

...i hear people say neuro/mental things all the time, but has anybody had strange crippling things like THAT?

Ohhhhhhhh yeah

....say celiac was a big issue, are things like that POSSIBLE with celiac?

Quite.

I had a terribly serious mental illness before going gluten-free, in addition to most of what of you describe.

Perhaps the more relevant part tho, is that so many of the other mental symptoms continued while 2+ yrs gluten-free.

(No CC or anything, believe me. I don't eat out & lived alone)

It wasn't until I was off dairy AND soy that my brain "woke up". I felt like I was actually LIVING again.

It's really not an overstatement to call it miraculous.

(Sure wish I'd gone off soy 2yrs earlier but even the 7-9day tests were inconclusive. It took 12 days to know. So anyone doing an elimination test, PLEASE do it for 2 whole weeks. :) )

Rpm999 Contributor
Rpm999
Posted
  • Author

thanks for all the advice, i'll definately look into magnesium and B12, i could have a huge deficiencies for all i know

i was just wondering, because having things like your senses and everything so off is just extreme, so i was wondering if celiac can cause that...makes you feel like your brain is frozen or undeveloped or something, hard to explain

Spunkymom Newbie
Spunkymom
Posted

You may want to check with your neologist and see if you are having simple partial seizures. I had what we thought were "dizzy spells" for years before I had my first grand mal seizure this past december. Simple partial seizures are sometimes described as a dejavu feeling or being disconnected from your body, but you don't loose consiousness.

at first i thought i had celiac, but i didn't take it serious and look into things...i started to think maybe it was just bothering me because of other issues, because of how many symptoms i have going on, but i realized it's most likely a big thing and really seeing how the diet goes

i wanted to know though, has anybody ever had severe mental/neuro symptoms where it feels like you don't know how to react to things? i feel like all my basic skills/reactions are just so off, nothing really feels right and some things you can't even explain...if i'm walking, if feels like my head is just frozen there and my body is just going along with it, it's hard to explain but it feels like everything feels the same

basically like, my brain feels frozen...everything feels the same and everything feels like something, somebody could give me a billion dollars and i just wouldn't know how to react

if i'm reading/hear something, it just won't sink in and flies right by and that's scary to me...i hear people say neuro/mental things all the time, but has anybody had strange crippling things like THAT? some of it is just so strange, but nothing feels right in any way and i just feel like a zombie, my sense of time, place, being...it all feels gone...i can talk for hours, yet not even know what i'm talking about and it feels like an etch-a-sketch...if there's two noises at once, it feels like my heads going to explain, even the other type of senses- hearing and vision, just feel very off...i look at something and don't even know if that's how it's supposed to look

i made a topic like this before, and i'm looking into other things too but i'm wondering....say celiac was a big issue, are things like that POSSIBLE with celiac? is there anything CAUSED by celiac, or any levels that could be off to cause things like that? i feel like i have no direction

for awhile, i thought maybe i had a gluten intolerance because of lyme or something but i don't even know if i have lyme, and i doubt it...starting to think it's the other way around and celiac could be the big issue, but those things i say seem so out there and different that i always thought that celiac couldn't cause things like that, but hopefully there's some insight on that...it's just so deep and hard to explain :(

Archived

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

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


  • Member Statistics

    • Total Members
      127,997
    • Most Online (within 30 mins)
      7,748
    J Marie
    Newest Member
    J Marie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
    • knitty kitty
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By knitty kitty · Posted

      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above.  You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thanks for your response! Yes, you’re correct that many of my symptoms improved when I went gluten-free, but issues like bone loss, infertility, hair loss, etc., seem to be the ones that haven’t responded. I’ve been on the gluten challenge for almost 7 weeks now, and I’m wondering how long I should continue it before testing again and making a final decision. I understand the benefits of eating gluten-free long-term, but I’m unsure how much longer to stick with the challenge to avoid another false negative celiac blood test.   What I would do differently if the test were confirmed positive is I’d receive a small amount of government help with gluten-free foods as a confirmed celiac. Doctors would be able to rule out further exhaustive testing. I’d also become even more strict about avoiding cross-contamination (for example, when eating at someone’s house, they may say something is safe, but it could have been cross-contaminated with gluten, or when going out to restaurants, they might say it’s fine, but it really isn’t). So, I would be extremely strict with cross-contamination if I were 100% confirmed as celiac, even though I’ve tried to be over the years but still seem to get sick.   Any advice on how long is typically recommended to continue the gluten challenge to avoid a false negative on the celiac blood test would be greatly appreciated!
×
×
  • Create New...