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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Depersonalization.
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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.

http://en.wikipedia.org/wiki/Depersonalization_disorder

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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

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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)

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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.

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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.

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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. :)

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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.

http://en.wikipedia.org/wiki/Depersonalization_disorder

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! :)

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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 :)

http://video.google.co.uk/videoplay?docid=...h&plindex=0

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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!!!! :)

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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.

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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.

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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.

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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. :)

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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. 

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 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. 

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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

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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! :)

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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!

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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.

 

 

http://www.anxietynomore.co.uk/depersonalisation_and_derealisation.html

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