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

Spacey/disconnected All The Time?

Inki

Recommended Posts

Inki Newbie
Inki
Posted

Hello all,

I am new to this forum. I am on my last legs and am suspecting that I might have a gluten problem. It would be helpful to hear your insights.

My biggest problem is feeling disconnected, spacey--like I cannot tune in and my thoughts are disconnected, like I'm not myself, almost like I'm watching my life on a video tape. It comes and goes throughout the day and is better when I haven't eaten. When my body is done digesting, I feel like it's just finished fighting a beast. Then I can usually focus better for a while until the hell begins again. I am so nauseous all the time that I can barely eat. After I eat, I usually run to the bathroom. This started severely a few days ago.

Before that, I was spacey and had bowel problems for the last three months but it wasn't as severe as now. I was away from home when it got very bad this week and was eating out a lot when the symptoms began.

Before it got this bad, I thought maybe I have problems with sugar, so I cut out all simple sugars. That helped somewhat but not fully at all. I am thinking that maybe it helped only because most sugary foods I ate also happened to have gluten in them--like cereals, etc. I still continued to eat health bread that had wheat in it thinking it's a healthy thing to do.

I gave blood today to test for gluten sensitivity.

This morning I began trying to stay away from gluten. I wonder how long it would take to see improvement after doing that?

The disorientation is unbearable. I really forget who I am in those moments.

Thanks for any thoughts

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

Celiac.com Sponsor (A8-M):


FMcGee Explorer
FMcGee
Posted

It's good that you got the blood test, but can you also see a neurologist? Whether you have celiac disease or not, you might have something going on neurologically that you should have checked out as well. Celiac disease can certainly explain a lot of different symptoms, but it isn't the answer for everyone, and I'd urge you to go to the neurologist in case there's something serious going on there. My mom had some problems like these and then she had a seizure. Not to, um, scare you or anything. I have no idea what's going on with you, of course, but another avenue of exploration might make sense alongside the celiac lines.

Sagekelli Newbie
Sagekelli
Posted

Neurologist idea is definately sound but I have the same problem and gluten free clears it right up. I had very little gastrointestinal problems, just mild diarreah every 3weeks or so without any cramping or discomfort, which was weird but it was what it was. I lost tons of weight...and i mean tons! and I have always been thin so needless to say between looking anorexic, eating like a maniac, and acting like a spaced out drunken idoit, everyone who didn't know me well had to confront me on my "drug problem" HOW EMBARRASSING!

ok any way almost 2weeks into a strictly gluten diet I felt amazing! better than these last two sickly years but i also realized that I could think clearer and focus better and accomplish more in less time with less effort than I ever could even since grade school. I didn't realize just how much i was suffering til i felt that much better...i mean i knew i was suffering but i never expected those results!

So....3weeks in I planned to relapse my diet just to make sure it wasnt a placebo effect. well the day before i made a mistake and ate wheat free but not gluten free cookies. just 3. I got a mild headache. I got very drowsy. I slurred my speech. I nodded off mid sentence. I picked fights with everybody just for breathing pretty much and felt soooooo justified in my irritation and anger. I forgot midsentence what i was saying and what the topic had even been even though i was passionatly screaming about it. i stumbled. my baby in a fit came to my lap crying and my fiance told me when i asked what happened that he had been there for 3 or 4 min crying on me for whateveritwas but i was spaced out and didnt realize it. i mean i kinda did but couldn't snap out of it. I was like that for DAYS!

No doctor would listen to me to check celiac because my symptoms werent classic. I met a dr who has celiac and as he put it "It makes my IQ drop about 30 points, im incoherrant, i stumble and slur...it makes me act like a drunk. Some people are effected neurologically by celiac. Sometimes people are effected neurologically by the malabsorbtion (malnutrition) celiac causes." he told me I was clearly malabsorbing and to just try the elimination test since my other dr had told me my bloodwork was neg but tested the wrong thing. I dont have official results but the way i can feel keeping gluten away is too good to go back to misery just so my test results are accurate.

yes celiac or gluten can make you spacey. or the worst kind of drunk.

  • 4 years later...
Simon-Australia Newbie
Simon-Australia
Posted

My biggest problem is feeling disconnected, spacey...and had bowel problems for the last three months 

....The disorientation is unbearable. I really forget who I am in those moments.

 

These are classic symptoms of gluten intolerance for many.  Before going gluten-free I felt very disconnected - now I can really focus and am much more in the present.

 

This has had a very positive impact on my relationships and business - I don't miss wheat at all !!

 

The initial detox when kicking gluten can be uncomfortable, but for most it's a short term experience and it is absolutely worth it.

kareng Grand Master
kareng
Posted

These are classic symptoms of gluten intolerance for many.  Before going gluten-free I felt very disconnected - now I can really focus and am much more in the present.

 

This has had a very positive impact on my relationships and business - I don't miss wheat at all !!

 

The initial detox when kicking gluten can be uncomfortable, but for most it's a short term experience and it is absolutely worth it.

Just an FYI, you are responding to a post from 2009. Might not get a response. :)

  • 5 weeks later...
Simon-Australia Newbie
Simon-Australia
Posted

Just an FYI, you are responding to a post from 2009. Might not get a response. :)

 

you replied ;-)

kareng Grand Master
kareng
Posted

you replied ;-)

Funny... I have heard from posters that don't check the dates of the thread and then get mad when people don't respond. We have plenty of threads from the last few days to respond to and maybe actually help the OP.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

you replied ;-)

Hi Simon,

 

Welcome to the forum! :)

 

You'll probably see people refer to their spaceyiness type symptoms as brain fog here.  That's generally what people call it.  And look, now you have two repsonses! :)

Questore Rookie
Questore
Posted

Hi Simon,

 

Welcome to the forum! :)

 

You'll probably see people refer to their spaceyiness type symptoms as brain fog here.  That's generally what people call it.  And look, now you have two repsonses! :)

 

And I'm #3...I have had severe Brain Fog for the last 19 years, Chronic Fatigue, Fibromayalgia, IBS, Anxiety, Depression, and a dozen other things going back 53 years to when I was 6 years old!

 

I have been Gluten Free 14 days, and have the best, most alert mind, and feeling of happiness since day 4.  Not having the Fog, the Tireds, make it worth living without gluten. 

 

I look forward to being really well...evidently, like others here on the forum, I have never known what 'well' feels like.

 

You are looking at your most likely answer already...get tested, and then get off the gluten!

Archived

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

Go to topic listing

  • 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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.