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

Brain Issues


cbrob

Recommended Posts

cbrob Newbie

Hello Peeps,

One of my most noticeable symptoms during my time with undiagnosed celiac was memory loss. It was mostly an issue with remembering faces. I am happy to say that being gluten free has restored my memory, and removed the social anxiety that comes with not remembering people you've know for years. I'm wondering what is the root cause of the neuro issues with celiac...Is it the auto-immune response attacking the brain or is it malnutrition from malabsorption that leads to the brain issues. Anyone know?


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

At the conferences I've attended, it's been pointed out that the blood flow to the frontal lobes is reduced in celiacs who eat gluten. Also, plaques can form throughout the brain. Take a look in the articles section of this site, because there are some interesting articles on neurological damage to the brain.

  • 3 weeks later...
MegRie Rookie

I have been thinking about this a lot lately. I have spent many years working with people with special needs and am continually finding links with gluten sensitivity and/or celiac disease. For example many people with Down Syndrome have Celiac Disease. I also read recently that women with Celiac Disease are more likely to have children with Autism.

I just finished reading a book, "Pretending to be Normal", about a woman who has Asperger's Syndrome but did not find out until she was an adult. It got me thinking about "weird quirks" I've had throughout my life. When I was a kid I hated wearing socks because "the seams hurt my feet" and to this day I literally can not stand the sound of people rubbing their feet on the carpet. These could be linked to Sensory Perception Disorder. My mother told me that when I was young I would throw the worst tantrums for hours over what seemed like absolutely nothing and that she could not get me to stop. It makes me wonder what link is here that we are missing, and if we could figure it out we might really be onto something. Also, a little off subject but what about scoliosis? Could this be due to celiac disease and malnourishment?

I know that is a whole lot of slightly disconnected thoughts, but it's just really been on my mind lately.

dilettantesteph Collaborator

I think that it is auto immune and not malabsorption since the symptoms come on quickly upon accidental ingestion of gluten.

cahill Collaborator

For me gluten ( and soy) has caused "brain" issues. My neurologist stopped short of diagnosing ataxia mainly because she could not believe my issues were caused by soy ( I had only been gluten free for about 8 months at the time) :rolleyes: .

All I know is when I am glutened or ingest soy I have memory/ataxia/ brain issues .

ravenwoodglass Mentor

I think that it is auto immune and not malabsorption since the symptoms come on quickly upon accidental ingestion of gluten.

That is the case for me also. I also have what are called UBO's, or Unidentified Bright Objects which are lesions that are diagnostic of the autoimmune attack on the brain.

megsybeth Enthusiast

I've been wondering about this too. My son has pretty bad motor delays and I've always been very clumsy, in addition to forgetful and flaky before my diagnosis. I know in young children fat is essential to the developing brain. So I do think the malabsorption of fats could play into it. I think the brain needs fats on an ongoing basis, so it might just shut some wings off, the way you would close rooms in a big house if you only had so much wood to burn.


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



Celiac.com Sponsor (A8-M):



Skysmom03 Newbie

My son has ADHD and scored "lower" on long term memory 92 even though his full scale IQ is 118. The doctor believes that his celiac was triggered two to three years ago which was exactly when we noticed a huge drop in reading scores and reading comprehension. Math no problems at all. All other scores at or above grade level. Reading/ memory in the second to early third grade range. He is in the fourth grade. So I definitely think celiac plays a huge role in all of this( oh and I must say that the testing was done 2 weeks prior to his official celiac diagnosis.

  • 2 weeks later...
Lady Eowyn Apprentice

Hi

A bit late coming to this, I know, but with gluten I used to have balance issues. Only a little but enough to be a nuisance and make me self conscious - comparable to getting up after a large glass of wine! Also slightly clumsy, knocking myself on things. I also do one morning a week requiring mental arithmatic and with gluten the numbers are in a thick soup in my brain. Happy to say without gluten my balance is fine and my brain agile.

I have taken this as a warning of what could happen in the future without being gluten free - gluten directly affects my brain!

IrishHeart Veteran

There are many articles about neurological impairment, gluten ataxia and celiac.

I think it may be both ---autoimmunity and the complications of long term UnDXed celiac disease and malabsorption.

Many vitamin, mineral and amino acid deficiencies can cause memory issues..

I had so many of them myself for 3 horrible years and suffered what I call "gluten head" (and they come back if glutened accidentally)

One says:

"patients who develop neurological dysfunction should be carefully screened for these. However, malabsorption does not satisfactorily explain the pathophysiology and clinical course of many of the associated neurological disorders. Other mechanisms proposed include altered autoimmunity, heredity, and gluten toxicity"

That citation is found here:

Open Original Shared Link

Here are some other articles:

Open Original Shared Link

Open Original Shared Link

and

Open Original Shared Link

1desperateladysaved Proficient

I have been thinking when my body picks up gluten, or something else it doesn't like, it just shuts off getting nutrients.

Diana

Lady Eowyn Apprentice

"Gluten Head" - that's what it is !!! New medical term, I think :P .

IrishHeart Veteran

"Gluten Head" - that's what it is !!! New medical term, I think :P .

Copyrighted by IrishHeart 2011

first used in a conversation with EatMeat4Good.

(she'll vouch for me) :D

I call what I lived in Gluten Head Hell

(will probably be the title of my book.)

Cracked up my GI doc with that one. He asked if he "could use it". I said "Go for it dude"

but give me props when you do.

.

(not really funny back then "during it" --not funny at all)

kareng Grand Master

The Op hasn't been back since "he" posted this. Wonder if the "gluten head" caused him to forget his password? :)

This happened to me. I made a Facebook page and promptly forgot the password. Then realized I had entered the email wrong, too!

Lady Eowyn Apprentice

Another aspect of Gluten Head - when glutened on waking in morning I have to go through the days of the week to work out what day it is! Had no idea this was caused by gluten until gluten free!

anabananakins Explorer

I'd have conversations with my colleague, turn to my computer to start working on whatever we'd discussed (literally seconds late), and then have to ask her what we were talking about. Happily, 2 + years gluten free and I am now *much* better at remembering.

Hi

A bit late coming to this, I know, but with gluten I used to have balance issues. Only a little but enough to be a nuisance and make me self conscious - comparable to getting up after a large glass of wine! Also slightly clumsy, knocking myself on things. I also do one morning a week requiring mental arithmatic and with gluten the numbers are in a thick soup in my brain. Happy to say without gluten my balance is fine and my brain agile.

I have taken this as a warning of what could happen in the future without being gluten free - gluten directly affects my brain!

Me too. I used to crash into everything, I couldn't handle walking in crowds because I had so much trouble not walking into people who were walking towards me. It was really scary reading about gluten ataxia and how bad some people had it and it was what made me so dedicated to going strictly gluten free even without a diagnosis. It took about 6 months to resolve. Scary how it can affect the brain.

megsybeth Enthusiast

My motor issues have improved a lot in just a few weeks. The other day I was wearing shorts and I asked my husband if he noticed anything different. He looked down and immediately said, "There aren't any bruises on your legs"!

  • 4 years later...
cbrob Newbie

HA, just following up :)

Still feeling groovy and remember faces.

 

  • 3 weeks later...
ch88 Collaborator

I don't think anyone knows for sure. It is thought that there are lots of different ways gluten can effect the brain. Some of these are nutritional related and other are autoimmune related. The brain is super super complex. 

Interesting that you say you couldn't remember faces in particular.

I could remember faces before I went gluten free. Autism is a very wide spectrum and there is a lot of variation. Not being able to remember faces is a very common autistic trait. I could remember faces but I had tons of other autistic traits before I went gluten free. Memory was the only things that wasn't very effected in my brain by gluten. I still had some problems remembering things though. 

When I went gluten free people appeared a lot different visually to me. This included how peoples faces looked to me visually. I could tell at a glance what "style" or "look" people were going for. I couldn't do this before. The styles that people wore also seemed very exaggerated and extreme to me. 

Could you read facial expressions?

ch88 Collaborator

Ooops. I didn't see that this was a (newly updated) ancient thread. 

knitty kitty Grand Master

Here's one of my favorite articles on gluten's effects on the brain:

Open Original Shared Link

Do start a new topic if you would like to further discuss this.

Kitty

knitty kitty Grand Master
3 hours ago, ch88 said:

Ooops. I didn't see that this was a (newly updated) ancient thread. 

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,569
    • Most Online (within 30 mins)
      7,748

    lizz Z
    Newest Member
    lizz Z
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.