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

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.