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 Celiac.com!
    eNewsletter
    Donate

Glutened And Frightened


revenant

Recommended Posts

revenant Enthusiast

I don't really know why Im posting but last night I was glutened and right now, 24 hours later I feel like I'm losing my mind!! I haven't eaten gluten for around 6 months... My brain feels completely numb, but is throbbing at the same time and evyerthing is scary. I don't know what else to say I can barely comprehend simple things like a word.... I thought this computer screen was a picture frame that represented my soul and when it froze I thought I was going to die. What the heck is this!!! I looked in the mirror about an hour ago and IT WASN'T ME. The thing just kept staring at me but I WASN'T LOOKING.. My eyes blurred and my face disfigured, my eyes went crazy and I think I'm only making this worse by freaking out but I'm so scared. I think my body is sending out a natural response to be frightened.... Even as I'm typing these aren't my hands... And I feel pumped with adrenaline, probably fear induced but to an extent that I could never mimick!! Gosh I hope I don't have a panic attack

I was just meditating in bed, and I went to the bathroom to pee and while I was walking there I saw my mom and I didn't know who she was! Or why she was there! Oh gosh I'm about to have a panic attack..... I don't know what good typing this is doing but I guess i'm just trying to calm myself down.. I hope somebody replies soon, I'm not used to this, this is a more...severe reaction.. But I did always have a kind of psychotic.. perception, that was off.. a little bit before I went gluten free I just didn't notice it... It's like my perception is off and my brain is telling me certain things are other things and then making it come true!

I'm going to stop ranting like a complete maniac and just breathe deeply and hope somebody replies...... Could this all be in my head???

Edit: Okay wow . The near-panic-attack is gone but i'm stil in this weird perception world. My hands still aren't mine...But the body fear is gone.... Thank god. What a weird combination of things, I hope the panic doesnt' return. I guess writing this relieved something. How long do 'mental' effects last usually for whoever is reading this? I feel like I'm talking about drugs at this point. I guess in a way I am!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

I am so glad to hear the worst of it is over for you. Writing here was and is a good choice. Keeping a journal can also really help. So often gluten affects the brain. Creates anxiety and weird perceptions. I grew up with this as a common occurrence. The thing is to not be afraid if that is possible. Deep breaths. My parents were anthropologists so I grew up knowing that shamans are a natural part of every society. It made me realize there is a purpose for sensitives like us. We don't have to go down the path of fear if we choose not to.

Drinking some water with baking soda helps me. Also eating plain yogurt. Or make a veggie shake of things like parsley, celery, cabbage etc. to clear the brain. Dandelion tea also helps detox the liver.

Obviously don't drive or operate complicated machinery. If you are not allergic to pineapple or papaya, eat them if they are around. Or take some papain/bromelain capsules.

Avoid sugar...

When able, go for a walk, take a sauna, get some exercise to get it out of your system.

Hope you feel better soon!

Bea

PS--check out this link on the connection of gluten and candida that another poster sent out earlier today. It talks a lot about gluten etc. affecting the central nervous system. Open Original Shared Link

Link to comment
Share on other sites
revenant Enthusiast

Thanks for the reply

I love the way you view 'us sensitives'. That is a very comforting way to see it...

If anything, glutenings provide excellent opportunities for the practice of self nurturing.

Perhaps I'll even dig up some dandelion root from the yard tomorrow. Nothing more reassuring than the reassurance of nature... I have yet to try dandelion root tea

I'm glad to hear that I wasn't frantically chugging parsley juice for no reason. Well, perhaps an over exaggeration... The power of greens is amazing in any situation

I am making a mental note of your suggestions for tomorrow. It's going to be a nature-nurture-day!

May I ask what bromelain assists with?

And looking forward to reading that post once my brain comes back to me.. Thanks again, your reply has really helped to calm the panic-button

Link to comment
Share on other sites
ravenwoodglass Mentor

Hopefully you are feeling better this morning. What gluten can do to the brain is scarey. The only good thing about this episode is that you knew what was going on and if it happens in the future you know why it is happening. That can make it easier to deal with. You may want to mention it to your doctor in case something like that happens when you are not at home in a safe place. A medical alert tag or a note from your doctor to carry in your purse might be a good idea to have. Sometimes a doctor can give us something to keep on hand to stop the panic attacks, some doctors will do this but some won't.

Just writing about what is going on can be helpful so I am glad you did.

Link to comment
Share on other sites
kellynolan82 Explorer

Sorry to hear about your glutening. This is always a possibility, though and one which we simply can never fully avoid. :unsure:

I have experienced so many symptoms. Sometimes my mouth gets ulcers along with other things as well :( It's hard.

Link to comment
Share on other sites
Strawberry-Jam Enthusiast

That sounds a lot like a psychotic break I once had after taking Ambien on an empty stomach. I couldn't see through my hallucinations, I looked in the mirror and I had three heads, nothing made sense, I kept poking my mama who was trying to help asking if she was really there because I couldn't see her and could barely feel her...

Scary to think that gluten could do something like that! I'm glad you're better now. Next time see if you can fall asleep and sleep it off, maybe? Some things just take time to clear out of your system. Taking/eating things that will help you detox sounds like a good idea as well.

Link to comment
Share on other sites
YoloGx Rookie

Thanks for the reply

I love the way you view 'us sensitives'. That is a very comforting way to see it...

If anything, glutenings provide excellent opportunities for the practice of self nurturing.

Perhaps I'll even dig up some dandelion root from the yard tomorrow. Nothing more reassuring than the reassurance of nature... I have yet to try dandelion root tea

I'm glad to hear that I wasn't frantically chugging parsley juice for no reason. Well, perhaps an over exaggeration... The power of greens is amazing in any situation

I am making a mental note of your suggestions for tomorrow. It's going to be a nature-nurture-day!

May I ask what bromelain assists with?

And looking forward to reading that post once my brain comes back to me.. Thanks again, your reply has really helped to calm the panic-button

Am glad I checked my email late last night and that my comments helped. Sounds like you are on a healing path today! The dandelion greens help too by the way. In the spring they make a nice addition to salad or your green shake.

When I was in grade school a couple of times I had some pretty extreme episodes. One time in particular I remember everything appeared to jump from far away to back up close and far away again. The principal then drove me home after I complained of feeling dizzy, nauseous and disoriented. My mother, bless her, who wasn't the best at nurturing, still somehow knew what to do. She had me lie down and then she rubbed my belly in a clockwise direction and told me to take slow deep breaths. It really helped!

The bromelain/papain are good pancreatic enzymes derived from pineapple and papaya. Unfortunately I can't take them anymore (or the fruit) due to salicylic acid (SA) and amine sensitivity, but for most people they really help.

Another good post glutening item to take is marshmallow root (assuming you don't have SA like me), to soothe and heal the damaged villi and take down inflammation.

These days I regularly take nattokinase to get rid of the scar tissue and any inflammation of the villi etc. as well as to thin my otherwise too thick blood. (Natto is made from fermented soy innoculated with bacteria from old straw. It was discovered by the Samurai to counteract/heal scar tissue.)

I also take co-enzyme B complex from country life. The B's often get compromised with celiac, especially after a glutening. Without the necessary B's its easy to get an attack like the one you had. The co-enzyme variety of B's go directly into the blood stream. You can think of them as coming to the rescue!

I have friends who are always talking about a book they read about highly sensitive people--how we represent a certain percentage of the population. Its good to keep in mind that we are here for a purpose and that we aren't alone. Its true we are natural shamanic types. However, these days what with science and the ability to access the past and present as well as the rest of the world through the Internet, there is no reason to suffer unduly.

Hope you are feeling way better today!

Bea

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Fire Fairy Enthusiast

Thinking of medical ID's check these out. I plan to get one ASAP.

Open Original Shared Link

Link to comment
Share on other sites
GlutenFreeManna Rising Star

I don't really know why Im posting but last night I was glutened and right now, 24 hours later I feel like I'm losing my mind!! I haven't eaten gluten for around 6 months... My brain feels completely numb, but is throbbing at the same time and evyerthing is scary. I don't know what else to say I can barely comprehend simple things like a word.... I thought this computer screen was a picture frame that represented my soul and when it froze I thought I was going to die. What the heck is this!!! I looked in the mirror about an hour ago and IT WASN'T ME. The thing just kept staring at me but I WASN'T LOOKING.. My eyes blurred and my face disfigured, my eyes went crazy and I think I'm only making this worse by freaking out but I'm so scared. I think my body is sending out a natural response to be frightened.... Even as I'm typing these aren't my hands... And I feel pumped with adrenaline, probably fear induced but to an extent that I could never mimick!! Gosh I hope I don't have a panic attack

I was just meditating in bed, and I went to the bathroom to pee and while I was walking there I saw my mom and I didn't know who she was! Or why she was there! Oh gosh I'm about to have a panic attack..... I don't know what good typing this is doing but I guess i'm just trying to calm myself down.. I hope somebody replies soon, I'm not used to this, this is a more...severe reaction.. But I did always have a kind of psychotic.. perception, that was off.. a little bit before I went gluten free I just didn't notice it... It's like my perception is off and my brain is telling me certain things are other things and then making it come true!

I'm going to stop ranting like a complete maniac and just breathe deeply and hope somebody replies...... Could this all be in my head???

Edit: Okay wow . The near-panic-attack is gone but i'm stil in this weird perception world. My hands still aren't mine...But the body fear is gone.... Thank god. What a weird combination of things, I hope the panic doesnt' return. I guess writing this relieved something. How long do 'mental' effects last usually for whoever is reading this? I feel like I'm talking about drugs at this point. I guess in a way I am!

I just had to tell you that all this could very well be caused by gluten. When I have been glutened I have an irrational fear of bugs. If I see a spider in the corner I completely freak out. I am scared for no reason at all. I have called my husband crying before because I knew I had to kill a bug and I was too scared to go near it. Then after I killed it with a kleenex and flushed it down the toilet, I had to take a shower because I was so creeped out. Then I spent an least an hour sitting curled in a fetal position, afraid and crying for no reason at all. I have no explantion for my irrational fear except the gluten. I have never taken any drugs. This ONLY happens when I have glutened. I was an outdoors person when I was a kid and didn't care about bugs or dirt or anything. Since I have been gltuen free I have no problem just killing the bugs and I don't freak out. My husband sees the difference and he is amazed. Before gluten free I would see a bug jump up, screaming for my husband to kill it and then at the very least have to leave that room for a while until I calmed down. Now I just squish the spider and go back to what I was doing.

Link to comment
Share on other sites
mushroom Proficient

So sorry to read about your panic attack and psycho episode the other night, and that I totally missed your thread. What a scary experience. Hope everything has returned to normal for you now. Hope mom is also more on board with your need to be gluten free :) Yes, gluten can act on the same area of your brain as drugs, so that is probably a pretty apt description. When I was a young teenager I was talked into taking methedrine (speed) at a party before any of us were ever aware of mind-altering drugs (yep, I'm that old), and not only that I took a double dose because I was trying to stay awake. The coming down from that experience was enough to convince me NEVER to mess with drugs again - talk about psychotic....I was a raving lunatic. Heard this voice going on and on and on and I wished they would shut the h*ll up, and then realized it was me that was talking. GAAAHHH!!! Got home into bed somehow and the room was spinning around one way and I was spinning around the other :o Could not see myself in the mirror, not that I wanted to. Scary stuff indeed. Hope you know how you got glutened so you can avoid it next time.

Here's an interesting link posted by cassP in another thread:

Open Original Shared Link

Link to comment
Share on other sites
revenant Enthusiast

D'aw, I WAS feeling a lot better

Yolo, the jumping far away and close is something I had about once a month as a child! Scary stuff indeed! Adorable how your mother tried to help in that situation. I was unbelievably grateful for your reply while in that state of panic! So thanks again

Glutenfreemanna, that makes SO MUCH SENSE!! I understand so well where you are coming from! That is the exact paranoia/distortion that I have. When I was having that panic attack I was rocking back and forth and crying while staring at a black garbage bag for christ's sake. I had persuaded myself that it was some kind of puddle of sludge. It seems like anything dark, and all extreme shade contrast is enough to have me curled up in a ball when glutened. Makes you wonder if maybe of the other intense bug-fears could be related to gluten too... Another thing I realized is that without food intolerances in my system i'm no longer afraid of things that normally others find 'creepy'. Being in a dark hallway, dark garage or basement... Things that other people would be paranoid about as if something paranormal were to pop out, those things no longer affect me. Interesting !

Mushroom that sounds like a horrible experience! Yikes. Certain drug "comedowns" do more than the actual drug! Crazy what substances can do to the "mind".

So, as I said I WAS feeling better but guess what. I got accidentally soyed and caseined, and MAYBE even majorly glutened. It's hard to know. I ate my mother's banana bread that I thought she said was gluten free. She is gluten free herself. I forgot that she eats soy and milk again...Asked her after getting the chills after eating it and she said she had used soy flour and milk. She may have even used wheat flour, she had made it for my younger sister originally who is a wheat ADDICT. I asked her if the flour that was all over the counter was gluten free flour and she said yes, and I figured that meant the banana bread she made was gluten free. But honestly I should have been more specific... We normally don't have wheat flour in the house so I passed it off as a possibility but then I remembered that my younger sister had just bought some to bake cookies.

Either way I will be reacting to the soy/milk I discovered were in there. Sighsighsigh

If it turns out that it was wheat based I am really in for some show tomorrow. Soy has me down and out pretty bad.

Looks like i'm in for ANOTHER healing day marathon. Yay me... Well now I know what to expect... And I get to put all of this self-care knowledge to good practice. Back into the war zone I go. If I have another experience like the last I will most likely be posting another frantic babble on here to get it out somewhere.

I love this site and how everybody understands and relates to this situation so well. Thank you all

Link to comment
Share on other sites
mushroom Proficient

Good luck with the aftermath :rolleyes:

Link to comment
Share on other sites
Molly R Newbie

Info in this thread is so helpful to me. I am new to all this and have been a bit confused since I tested negative to celiac disease thru blood testing and biopsy, but a stool sample showed I am gluten intolerant from one of my parents.

My symptoms are all neurological, but after reading all of this I'll be doing much more reading up on how someone can be gluten intolerant and not have celiac disease. I've experienced some frightening moments myself over the last few years and while I just removed gluten, dairy and even soy from my diet a couple weeks ago, I feel like I am going through withdrawal. I have a cousin who was in rehab for drugs a number of years ago and she swears that what I am going through is the same. I didn't believe her until I came upon this post.

Thanks.

Link to comment
Share on other sites
revenant Enthusiast

Hey Molly, I'm glad my bad experience had a positive outcome one way or another :D

It is great that you discovered you are gluten intolerant. Gluten certainly can have some horribly impressive effects on the nervous system. Impressive, in a very bad way! The way I see it is that Celiac disease is just one form of gluten intolerance. I remember reading somewhere (In a book?) That there are at least 5? (I think it was 5.. So unspecific I am) other types which can be equally as treacherous but in different ways. It's just that celiac disease is the only one the traditional doctors test for.

Withdrawal is a toughie. Good luck!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
    • ekelsay
      Today, I received the results of my Tissue Transglutaminase (tTG) Ab, IgA test. I am not sure how to interpret the results. I have left a message for the doctor that requested the test but have not heard back. The results stated that the normal range is from 0.00 - 4.99 FLU. My results came back at 92.08. Is this concerning? This seems extremely high for someone who has reached the age of 50 before finding out he has celiac disease.  The reason that I was administered the test in the first place is due to bloating issues that started about a year ago. I met with a Gastroenterologist and after a short question and answer session she wanted to test me for celiac disease and a bacteria test via the H. Pylori Breath Test. She seemed more concerned with the fact that I am a healthy male suffering from Anemia. Is it possible the anemia could be a result of celiac disease? I have been on an iron supplement for the better part of 5 years.      
×
×
  • Create New...