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

By Guest CD_Surviver
in Related Issues & Disorders

Recommended Posts

taweavmo3 Enthusiast
taweavmo3
Posted

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
darlindeb25
Posted

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
darlindeb25
Posted

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
Rachel--24
Posted

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
jerseyangel
Posted

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
Jen H
Posted

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
kevsmom
Posted

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
cornbread
Posted

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
darlindeb25
Posted

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
VydorScope
Posted

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
Guest Viola
Posted
: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
Guest CD_Surviver
Posted

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

<{POST_SNAPBACK}>

Thanks for the permission! :D

Carriefaith Enthusiast
Carriefaith
Posted

you can use any info I have :)

darlindeb25 Collaborator
darlindeb25
Posted

Use away! Deb

Rachel--24 Collaborator
Rachel--24
Posted

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
Guest CD_Surviver
Posted
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
kevsmom
Posted

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

Cindy

jerseyangel Proficient
jerseyangel
Posted

Add me to the list--glad to help.

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

Cindy

<{POST_SNAPBACK}>

thank you!

Lauren

Carriefaith Enthusiast
Carriefaith
Posted

Let us know when you decide on your topic :)

Guest CD_Surviver
Guest CD_Surviver
Posted

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
Guest Viola
Posted

: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
Guest CD_Surviver
Posted

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.

Go to topic listing

  • 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. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    2. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    3. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
    4. Scott Adams
      - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune...
    5. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Am I nuts?

      By Scott Adams · Posted

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.