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):

  • Join Our eNewsletter:
    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. Scott Adams
      - Scott Adams replied to yellowstone's topic in Coping with Celiac Disease
      3

      Has someone experienced discrimination because of their illness?

      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:
    2. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

      It's too bad relationships end because of this disease, but I suppose that being healthy may be more important than being married or living with someone who isn't on board with the gluten-free diet.
    3. Flash1970
      - Flash1970 commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

      This is a huge topic. My ex husband didn't care. Even though I had my own area where his food wasn't allowed, I'd find crumbs. I was always constantly cleaning. I threw a lot of food away because I wouldn't be sure if he had contaminated it. It really showed what a narcissistic person he was and is. Now I'm in my own home. Much better. I do have dogs...
    4. Russ H
      - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number...
    5. suek54
      - suek54 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      46

      Shaking/Tremors and Off Balance

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly. I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,941
    • Most Online (within 30 mins)
      10,442
    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:  
    • Russ H
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Russ H · Posted

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Shaking/Tremors and Off Balance

      By suek54 · Posted

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      HLA-DQ2 POSITIVE it's nothing

      By Scott Adams · Posted

      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
×
×
  • 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.