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

Depersonalization.

Andy-oh

By Andy-oh
in Coping with Celiac Disease

Recommended Posts

Andy-oh Rookie
Andy-oh
Posted

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
aikiducky
Posted

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
EBsMom
Posted

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
FootballFanatic
Posted

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
FootballFanatic
Posted
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
Nuala
Posted

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
melrobsings
Posted
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
Andy-oh
Posted
  • Author

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
Cherry Tart
Posted

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
Andy-oh
Posted
  • Author
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
Guhlia
Posted

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
MIgrainePosterChild
Posted

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
bartfull
Posted

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
MIgrainePosterChild
Posted

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
KMMO320
Posted

 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
Joshua54321
Posted

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
bartfull
Posted

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
cyclinglady
Posted

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
cristiana
Posted

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.

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.