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

Depersonalization.


Andy-oh

Recommended Posts

Andy-oh Rookie

I was just wondering if anyone has had any experience of this as part of there experience with gluten, be it eating gluten foods or when you went gluten free etc.

here is the wikipedia description of Depersonalization-

Depersonalization Disorder (DPD) is a dissociative disorder in which sufferers are affected by persistent feelings of depersonalization. The symptoms include a sense of automation, feeling a disconnection from one's body, and difficulty relating oneself to reality.

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

I haven't got any experience with this... a glutening can make me feel cut off from the outside world, but not from myself. Is this how you have been feeling lately? Is there any chance of getting to see someone? It does sound like you might need some outside support, I'm a little bit worried now?

Pauliina

EBsMom Apprentice

That's kind of how I felt during my "detox" phase, when I first gave up gluten and sugar (at the same time, silly me.) I've also felt that way after a bad accidental glutening. It's never been a sustained thing, though....a few hours. It would be pretty freaky to feel that way for a long time. Are you experiencing this?

Rhonda (Rho)

FootballFanatic Contributor

I've felt that, I'm not sure of whether or not I've been glutened because I haven't ingested something with gluten in it for sure, but I've had the symptoms so I'm thinking maybe I touched something bad before I ate.

I also get it sometimes when I am just daydreaming because I'm still trying to cope with the fact that my life is different now. It's a hard feeling to shake off. I just try to grab hold of something around me, and come back to earth and see that I have control of my body.

FootballFanatic Contributor
I've felt that, I'm not sure of whether or not I've been glutened because I haven't ingested something with gluten in it for sure, but I've had the symptoms so I'm thinking maybe I touched something bad before I ate.

I also get it sometimes when I am just daydreaming because I'm still trying to cope with the fact that my life is different now. It's a hard feeling to shake off. I just try to grab hold of something around me, and come back to earth and see that I have control of my body.

**EDIT**

I read the description again and I think mine is more that I am too in touch with reality. I realize the reality of my life and then feel disconnected like I'm watching some carwreck happen and saying NOOO DON'T HAPPEN!

I would recommend a counselor because I have had one helping me through it and it's very helpful and they can help validate your feelings and help you find ways to cope with them.

Best of luck.

Nuala Newbie

I have experience with a lot of psych symptoms, including depersonalisation, mainly caused by my untreated hypothyroid condition (10+) years. The most common cause of depersonalization is clinical anxiety. I view my anxiety as very physiologically based, not "in my head" . Now, I understand that my gluten intolerance also plays a role in this. It can affect my thyroid and exacerbate its dysfunction and it can also cause anxiety on its own. As well, from my own experience and reading here on the boards, going gluten-free can cause anxiety, by means of some sort of withdrawal syndrome. Finally, if one has, as I do, vitamina and mineral deficiencies (whether by autoimmune process - i.e. pernicious b12 anemia, or just as a result of malabsorption, e.g. iron deficiency/anemia and b12 deficiency), these too can result in anxiety.

I did a lot of research on my own deficiencies and found that there is definately evidence that both b12 deficiency or anemia (measrued by serum b12) and iron depletion or anemia (measured by low ferritin) can clearly cause physiologically-based anxiety. So, you have some examining to do with regard to your current condition. Since I started b12 shots (now sublingual) and supplemented with iron (still not at optimum ferritin) and gotten proper treatment with Armour thyroid, I have not had the extreme anxiety I was suffered, and have not had a depersonalization episode.

I still have a high level of anxiety compared to most people, but tweaking the above I hope will help. Since I went gluten-free, I do feel definately less brain fog, and a bit more "at one" with my environment. Hopefully, as a result of being gluten-free, my autoimmune and inflammatory responses will be lessened, resulting in less physiologically-based anxiety.

Finally, I expereinced a "withdrawal syndrome" the first few weeks of being gluten-free, the central feature of which was anxiety, but thankfully, it has passed for the most part.

Hope this helps. :)

melrobsings Contributor
I was just wondering if anyone has had any experience of this as part of there experience with gluten, be it eating gluten foods or when you went gluten free etc.

here is the wikipedia description of Depersonalization-

Depersonalization Disorder (DPD) is a dissociative disorder in which sufferers are affected by persistent feelings of depersonalization. The symptoms include a sense of automation, feeling a disconnection from one's body, and difficulty relating oneself to reality.

Open Original Shared Link

I have felt it too and I have found that taking an iron pill helps. May sound crazy but if was referred to me and i TOTALLY works! :)


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



Celiac.com Sponsor (A8-M):



Andy-oh Rookie

Thanks for the replies and advice everyone,

I have been suffereing with this on and off since going gluten free around 3-4 weeks ago, although the last few days ive seen an improvment so i guess it could be from cutting out gluten so suddenly, perhaps my body had been kind of addicted to it, ive been taking B12 subligual for around 2 weeks now aswell and i think thats starting to help, ive had this depersonalization before but it never lasted that long, but since going gluten free the depersonalization has been longer lasting, some people have said that when you go gluten free you can re-visit some of the symptoms you've had.

Whilst researching depersonalization i came across this trailer on google video which i really want to see now :)

Open Original Shared Link

Cherry Tart Apprentice

I'm SO glad you posted this!!! I had this very experience for months when my celiac response had escalated (prior to diagnosis). I thought I was going crazy. I tried to explain it to my doctors...but, they too thought I was crazy. <_< I was promplty put on zanex (which amplified the strange feeling). I felt like a zombie. It almost felt like an out of body experience....I felt like I wasn't in my body, I was just an observer. Sounds totally bizarre. Now we know there's a neurologic tie to the gluten making ones system become toxic. I had this experience even after being gluten free for several weeks. Once all the gluten was purged from my system, that feeling dissappeared. I'm SO thrilled there's a name for it! Thank you!!!! :)

Andy-oh Rookie
I'm SO glad you posted this!!! I had this very experience for months when my celiac response had escalated (prior to diagnosis). I thought I was going crazy. I tried to explain it to my doctors...but, they too thought I was crazy. <_< I was promplty put on zanex (which amplified the strange feeling). I felt like a zombie. It almost felt like an out of body experience....I felt like I wasn't in my body, I was just an observer. Sounds totally bizarre. Now we know there's a neurologic tie to the gluten making ones system become toxic. I had this experience even after being gluten free for several weeks. Once all the gluten was purged from my system, that feeling dissappeared. I'm SO thrilled there's a name for it! Thank you!!!! :)

Yes thats exactly how ive felt, also sometimes when i'm talking it would almost feel as though it was someone elses voice, hard to explian the feeling, it's not really a panic attack because i'm not struggling for breath etc but it's certainly a scary experience sometimes, it could be a symptom of depression aswell.

Guhlia Rising Star

I used to suffer from dissociation and depersonalization as a result of borderline personality disorder. Since going gluten free I no longer suffer from those symptoms unless I am SEVERELY glutened. Hopefully this will go away for you completely. Those things are no fun, especially not if you have a good idea of what "normal" feels like.

  • 5 years later...
MIgrainePosterChild Newbie

I have had a history of familial hemiplegic migraines since since I was a kid and I used to feel "out of body" and have visual disturbances with my migraines.Lately this out of body feeling has been every day to the point where I don't want to leave the house because I don't feel like I am fully present. I can look down at my hand and it will seem like it's not mine. Visually, things will seem really bright and I can only describe it to people as feeling "off", just not normal, so I began to realize that there must be something other than my migraines causing it. Further research seems to point to malabsorption issues which have gone unchecked for years, mostly likely caused by a gluten and or lactose intolerance and possibly resulting in depersonalization. The malabsorption and depersonalization issues are things I have researched for myself and the doctor wouldn't verify them. She did not understand the feelings of disconnect from my body that I was trying to describe. She recommended that I should see a psychiatrist, GI specialist and/or neurologist. I am now attempting to go 100% gluten free including eliminating bath and body products with sorbitol, wheat germ etc and I was tested for VItamin B12 deficiency today. All I know is that I can't remember the last time I felt normal, not sick or out of it like a walking zombie. I am just hoping the malabsorption can be corrected by completely going gluten free and the "out of body" feelings will disappear. Perhaps my migraines will then be a thing of the past too.

bartfull Rising Star

PosterChild, your posts are getting buried in these old threads. If you don't mind a suggestion, why don't you start a new thread of your own. Introduce yourself, tell us some more about your symptoms and your diet.

 

One of they symptoms of celiac is neurological so that feeling of depersonalization doesn't surprise me. It doesn't even surprise me that your doctor is not helping. If you check out the thread, "Stupid things doctors have said to me" you will know why.

 

Read the "Newbie 101" thread. It'll help you get started. Ask lots of questions here. Know that you are NOT crazy, and you are not alone. :)

MIgrainePosterChild Newbie

PosterChild, your posts are getting buried in these old threads. If you don't mind a suggestion, why don't you start a new thread of your own. Introduce yourself, tell us some more about your symptoms and your diet.

 

One of they symptoms of celiac is neurological so that feeling of depersonalization doesn't surprise me. It doesn't even surprise me that your doctor is not helping. If you check out the thread, "Stupid things doctors have said to me" you will know why.

 

Read the "Newbie 101" thread. It'll help you get started. Ask lots of questions here. Know that you are NOT crazy, and you are not alone. :)

Thank you! I will do that. 

KMMO320 Contributor

 Before I was diagnosed, I went to the dr complaining that I felt like I wasn't living. I felt like I was standing outside my body, watching myself perform actions and sometimes I couldn't recall doing them. I havent had that feeling at all since being gluten-free, I have been gluten-free since October. 

  • 2 years later...
Joshua54321 Newbie

I've had that before going gluten free but not that bad but since going gluten free it's amplified this feeling and I've been gluten free for nearly 4 weeks how long will it take to go away does anyone else have this and how long did it take you to feel normal again ? Pls reply would put me at ease to know I'm not alone

bartfull Rising Star

Hi Joshua. This is a really old thread and most of the people who wrote aren't here anymore. But to answer your question, I think you are going through gluten withdrawal. I had similar feelings when I went through it, along with mood swings, headaches, ravenous hunger, and just an overall feeling that something was wrong. You should be coming out of it soon and start feeling good again. Hang in there! :)

cyclinglady Grand Master

Welcome Joshua!

Four weeks into the gluten-free diet is not very long. I do not know if you have been diagnosed with celiac disease, but it can takes months to YEARS to recover.

The University of Chicago's celiac website contains lots of valuable information and our own Newbie 101 thread under the "Coping" section is helpful. It covers issues like cross contamination and hidden sources of gluten.

Celiac can affect people in so many ways: Depression, anxiety, neurological disorders, etc. You are not alone!

I hope this helps, we might be able to help more if we knew more about you and your symptoms.

Take care!

cristiana Veteran

Hi Joshua

 

I wonder have you had your iron and B12 levels checked?  If not please do.  I was low in both and believe you me, these deficiencies can make you feel anxious and things just don't seem or look right - I experienced so many of these symptoms.  I then worried about how I felt and it just made things even worse.

 

I am thankful I found the Anxiety No More website. It was a real godsend, as was the book.  I attach the link on depersonalisation in case it  helps you.    Since going gluten-free things irmproved but I have had the odd setback - the book also deals with setbacks.  I should say the book is not written specifically for celiacs but anxiety sufferers..  It explains things so well.  

 

You don't have to be a celiac to have these issues, but it seems that many celiacs do have to wrestle with the sort of things cyclinglady describes.  You are definitely not alone.

 

All the very best.

 

 

Open Original Shared Link

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - K6315 replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?

    2. - kate g posted a topic in Gluten-Free Restaurants
      0

      Nandos improper preparion celiac childrens food

    3. - Scott Adams replied to TexasCeliacNewbie's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High blood test numbers - with scales. Any advice?

    4. - trents replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?

    5. - K6315 replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,753
    • Most Online (within 30 mins)
      7,748

    Alison A
    Newest Member
    Alison A
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • K6315
      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
    • Scott Adams
      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  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.     
    • trents
      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
×
×
  • Create New...