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

Research Question


Guest CD_Surviver

Recommended Posts

taweavmo3 Enthusiast

Just wanted to throw another idea your way. I'm fascinated with the "Opioid Excess Theory" and the neurological impairments it incurs. This may be related to brain fog as well, not completely sure. I believe the opiate effect is why my little girl is so developmentally delayed, and also why her speech regresses when glutened.

My dd's pedi GI told me he has a teenage patient that reverts back to stuttering when he gets glutened. He hasn't stuttered in eight years, but it comes back w/gluten. I find that mind boggling. Good luck with your paper!


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



Celiac.com Sponsor (A8-M):



  • Replies 55
  • Created
  • Last Reply
darlindeb25 Collaborator

Wow, 4 yrs gluten free and I never heard anyone before describe how I used to feel and I never connected it to gluten. I used to feel I was floating around a room--this is the perfect description: I can see and hear everything going on around me but I cannot connect or respond to any of it. Another description is like having my head wrapped in an airtight box--exactly Ianm, exactly. Wow, all that time it was gluten and I thought it was panic--well, my panic was caused by my celiacs--I am amazed at this. Learn something everyday! Deb

darlindeb25 Collaborator

Honest, you guys brought tears to my eyes--I was told it was all in my head--that was back when I had panic attacks and I felt just the way you are describing. It is such a relief to know it wasnt me--I believed it was in my head like they told me for so long. I feel like a weight has been lifted from my shoulders. Thank you so much! Deb

Rachel--24 Collaborator

Wow Deb! I'm glad you're feeling better about knowing after all this time. I'm very shocked you never heard of the brainfog/gluten link. I think its a very common symptom. Well...better late than never right!! :)

jerseyangel Proficient

I feel the same way! I never knew what the heck it was, either. It was such a relief to know that thats what it was and that I'm not alone and not going crazy. Its easy to look back and say "ok, I understand it now" but when you're actually going through it, its scary. Head wrapped in an airtight box--exactly.

Jen H Contributor

Brain fog to me feels very much the way Ian M described it. I feel as if I'm in a different zone, or in a bubble. People talk to me and I don't hear them. I also can't concentrate when I have brain fog.

kevsmom Contributor

How about malabsorbtion as a topic? I was severely anemic, my platelet count was way off and My body was not retaining Vitamin K. As a result of that, I had bruises all over my body for no known reason. I developed a nose bleed that lasted for 4 hour and ended up in the hospital overnight to get blood and plasma. :(


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



Celiac.com Sponsor (A8-M):



cornbread Explorer

Without making it sound like fun, brain fog can feel quite similar to being drunk, or at least under sedation. Imagine being drunk but trying to do something complicated, and how frustrating it is that your brain and body won't cooperate with each other! :D And how you don't feel like you're really there - like if someone snapped their fingers they could wake you up and tell you you had been dreaming. I also find my speech can slur a little with brain fog, or my words will come out wrong. I also find it too much like hard work to have a conversation - I don't have the mental focus to put any feeling or volume into my voice. I also hear a ringing in my ears sometimes, like I can hear the silence. :ph34r: And I find that normal noises sound too loud normal lights seem too bright. :unsure: It sucks!! The worst part about getting glutened (or caseined) for me is the knowledge that I have a week's worth of living in a bubble ahead of me. :( This usually goes hand in hand with chronic fatigue, but the times that I overcome that the brain fog still remains.

darlindeb25 Collaborator

I have always known there was brain fog--I have always heard about it--I just never realized it effected me. Ianm said the exact words I used to describe the feeling I had, exactly. I remember feeling like I was floating around the room and could hear everything that was said, but could not talk. I was in a room with the school principal, a social worker, 3 teachers, and my son Mike--it was an IEPC meeting for my son. Later I described the experience exactly as Ianm did. All these years I thought I was crazy--the mental health clinic told me I was. Put me on Xanax and Paxil--grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. That experience was the first of many and it was 17 yrs ago--I have thought there was something wrong with my head since then. I was worried that one day I would lose it totally. It was such a relief to hear someone say exactly how I felt. Then Cornbread mentioned that she gets the fog with a casein accident--so I wonder now if I get it with soy/corn probs. I get the ringing in my ears--this last weekend it was terrible and I do have times where I feel I just cant put my thoughts together. This has been one of the most informative threads ever for me--thank you so much--all of you! ?Deb

VydorScope Proficient

You know I never thoguht about it much till jsut now, often when I would drive places... I would arrive there and not know how I got there. litterly I would sit in my car at my house/work/etc, then all of a sudden I was at where I was going, and the proper amount of time elapse...Never was able to figure that out... wonder if its connected to this fog stuff?

Guest Viola
:lol: I'll bet it is connected to brain fog. I would leave Slocan Park and the next thing I know I'm in Winlaw ... and what happened to Passmore and Vallican? :o I'm just afraid that someday I won't react quickly enough to a deer crossing the road, or worse yet a child on a bike. I really try not to drive at all if I have the symptoms before I leave home. Hard to do though if I get contaminated in town.
Guest CD_Surviver

Thank you all for the information and i have your permission and if i do end up doing this topic. i would like to use all of you for my paper in some any way possible.

Lauren

VydorScope Proficient
Thank you all for the information and i have your permission and if i do end up doing this topic. i would like to use all of you for my paper in some any way possible.

Lauren

<{POST_SNAPBACK}>

Don think I offer much, but use it at will :)

Guest CD_Surviver
Don think I offer much, but use it at will :)

<{POST_SNAPBACK}>

Thanks for the permission! :D

Carriefaith Enthusiast

you can use any info I have :)

darlindeb25 Collaborator

Use away! Deb

Rachel--24 Collaborator

You can't use anything I've written!!

Naw....just kidding! :lol::lol:

I dont know if I wrote anything useful but feel free to use whatever you want. :D

Guest CD_Surviver
You can't use anything I've written!!

Naw....just kidding!  :lol:  :lol:

I dont know if I wrote anything useful but feel free to use whatever you want.  :D

<{POST_SNAPBACK}>

Thanks bunches! :D

Lauren

kevsmom Contributor

Help yourself. I hope I have been helpful to you.

Cindy

jerseyangel Proficient

Add me to the list--glad to help.

Guest CD_Surviver
Help yourself.  I hope I have been helpful to you.

Cindy

<{POST_SNAPBACK}>

thank you!

Lauren

Carriefaith Enthusiast

Let us know when you decide on your topic :)

Guest CD_Surviver

well the ? was due today but she did not get to me today to tell me if the ? was good or not and if she thought it was good so i will know in the few days and on friday i am going on the genetics confrece with alot of the biology students that should be pretty helpful i hope.

Guest Viola

:o I just got home from dog training :D

You can certainly use anything I've written as well, and if you have any questions from any of us ... ask away :lol:

Guest CD_Surviver

thnks guy for all your imput it is definately helpful. she still hasnt looked at so i dont know what she is going to say about it but i will let you know as soon as i can.

Lauren

Archived

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

  • 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. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    5. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,234
    • Most Online (within 30 mins)
      7,748

    AjaxandLynda
    Newest Member
    AjaxandLynda
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
×
×
  • 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.