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

By cbrob
in Coping with Celiac Disease

Recommended Posts

cbrob Newbie
cbrob
Posted

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
rosetapper23
Posted

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
MegRie
Posted

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
dilettantesteph
Posted

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

cahill Collaborator
cahill
Posted

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
ravenwoodglass
Posted

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
megsybeth
Posted

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
Skysmom03
Posted

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
Lady Eowyn
Posted

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
IrishHeart
Posted

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
1desperateladysaved
Posted

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
Lady Eowyn
Posted

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

IrishHeart Veteran
IrishHeart
Posted

"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
kareng
Posted

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
Lady Eowyn
Posted

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
anabananakins
Posted

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
megsybeth
Posted

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
cbrob
Posted
  • Author

HA, just following up :)

Still feeling groovy and remember faces.

 

  • 3 weeks later...
ch88 Collaborator
ch88
Posted

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
ch88
Posted

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

knitty kitty Grand Master
knitty kitty
Posted

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
knitty kitty
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748
    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    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

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.