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

Brainfog

mm&j

By mm&j
in Coping with Celiac Disease

Recommended Posts

mm&j Apprentice
mm&j
Posted

This may sound stupid, so I probably have it...but could someone explain or elaborate on brainfog.

Thanks,

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
This may sound stupid, so I probably have it...but could someone explain or elaborate on brainfog.

Thanks,

Driving down the road and forgetting where you are going.

Starting a sentence and totally loosing your train of thought.

Not being able to verbalize the correct word of a discription.

Not being able to count money back, which you have done all you life and get a blank.

Lack of concentration.

Reading and not remembering what you have just read.

A feeling like you are in a cloud.

....just of few of my brain fog happenings or lack of.

mm&j Apprentice
mm&j
Posted
  • Author
Driving down the road and forgetting where you are going.

Starting a sentence and totally loosing your train of thought.

Not being able to verbalize the correct word of a discription.

Not being able to count money back, which you have done all you life and get a blank.

Lack of concentration.

Reading and not remembering what you have just read.

A feeling like you are in a cloud.

....just of few of my brain fog happenings or lack of.

Thanks, I have all of those but I just figured in my case it was because I am 50 years old with 6 and 8 year old talkative girls who have the tendency to never let me have a complete thought without asking for or telling me something. Maybe I'd better stop blaming them and realize it is a part of celiac...just diagnosed 2 weeks ago.

Thanks again

Nancym Enthusiast
Nancym
Posted

For me it felt like I was losing IQ. :P

mm&j Apprentice
mm&j
Posted
  • Author
For me it felt like I was losing IQ. :P

I've felt that way since I had my kids, of course that could be when the Celiac started.

Thanks.

Lisa Mentor
Lisa
Posted
For me it felt like I was losing IQ. :P

Oh yes, I agree with Nancy and that is a very scary place to be in. But let me add, lack of short-term memory. I am not the same person that I was before I became Celiac, but after almost two year I am pleased to reclaim some of what was lost. I may not ever be 100%, but still working on the rest. That is why is is SO VERY important to be diligent on your diet. Loosing brain cell, kinda sucks.

It is a common joke in our household, when I get glutened, my husband will ask me if I am dumber today than I was yesterday. I always answer yes. It's a light moment for us to understand each other.

mm&j Apprentice
mm&j
Posted
  • Author
Oh yes, I agree with Nancy and that is a very scary place to be in. But let me add, lack of short-term memory. I am not the same person that I was before I became Celiac, but after almost two year I am pleased to reclaim some of what was lost. I may not ever be 100%, but still working on the rest. That is why is is SO VERY important to be diligent on your diet. Loosing brain cell, kinda sucks.

It is a common joke in our household, when I get glutened, my husband will ask me if I am dumber today than I was yesterday. I always answer yes. It's a light moment for us to understand each other.

It is kind-of nice to know that there is a real reason for all the madness!

Thanks for answering.

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

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

It is like an out of body experience. I can see and hear everything that is going on around me but I am completely unable to connect with reality. The scariest times were when I was driving. It is a miracle I didn't kill somebody. It has been 2 1/2 years since I experienced brain fog and wouldn't wish it upon anyone.

Lisa Mentor
Lisa
Posted

I can attest that at times,Ithought to my self that I should not have been driving. We live in a very small community of 6,000, but the county is 14,000. Stop lights are few and traffic is slow. Good for me.

But, on the upside...it has improved with a good diet. Read, study, do mind games, exercise that head organ. Through malabsorption, it took a toll for me just like the other body issues, it will take some time to get back on track.

There is a light at the end of the tunnel. I have see it. I have experienced it.

cyberprof Enthusiast
cyberprof
Posted

I am in a very technical profession and finished my Masters in Finance in May 2005. Right after that I kept having problems understanding things at my job. It was one of the reasons my job went sour and I had to find a new job (which turned out to be a good thing). In my pre-diagnosis days, I'd look at a spreadsheet and tell myself "You have a Masters, you are not dumb, you will be able to figure this out", but I couldn't.

Pre-diagnosis, I ascribed my lack of brainpower to a combination of getting older, stress, lack of sleep and menopause. Of course, now I am still older, not getting enough sleep, still stressed and going through menopause, but I can think.

I can do percentages in my head and remember strings of numbers, like I could five years ago. I can calculate percentages on the spot, faster than my coworkers can on their calculators. I'll say "it's 82%" on a seven-figure number and the calculator will say it's 83%. I'm pleased that I am getting better, slowly.

~Laura

This may sound stupid, so I probably have it...but could someone explain or elaborate on brainfog.

Thanks,

Nantzie Collaborator
Nantzie
Posted

I had a really scary brainfog driving experience probably a month before I found out celiac even existed. Leaving my neighborhood, it took me a minute to remember what color on the streetlight was the green one. Yep. Turned around and went home.

Nancy

alamaz Collaborator
alamaz
Posted

lack of short term memory. i had to call my husband and ask him what year we were married in - 2003 or 2004 (yes, we haven't been married very long). Atleast I could remember the date!

deesmith Apprentice
deesmith
Posted
lack of short term memory. i had to call my husband and ask him what year we were married in - 2003 or 2004 (yes, we haven't been married very long). Atleast I could remember the date!

Oh thank God I'm not alone! I felt so stupid the day I saw Dr. Green at the Celiac Center. He asked how old I was and I said "I don't remember, 43 or 44, one of those! haha-- so glad we can all laugh at ourselves here!

surrender Newbie
surrender
Posted

For years I have been SOOO frustrated with my husband cuz he can't remember something we talked about 3 or 5 or 15 minutes ago. It's nice to realize there is a reason for it and that it may go away. Repeating myself over and over again drives me nuts!

jmd3 Contributor
jmd3
Posted
I had a really scary brainfog driving experience probably a month before I found out celiac even existed. Leaving my neighborhood, it took me a minute to remember what color on the streetlight was the green one. Yep. Turned around and went home.

Nancy

I had run a red light after I was done working one evening - didn't even realize I had to stop for anything - couldn't remember what the lights were for, the other time I ran a stop sign. Stopped driving for a while until I could think and talk better. There were days when I wanted to say something...and I couldn't remember how to get the words out...I would just end up crying. Bad thing was my work consisited of driving to give presentations - about 18 days a month - There were days that it even effected my eye sight, seeing double, and blurry. (that is all gone, and my eyes are the same before I got sick - according to the eye doc!)

Now, I am doing so much better at least my husband says I am getting better - got to believe him. I am now back to giving my presentations about 2 times a month. I rest the whole day before I go, and them do nothing the entire next day. It's slow going, but everyone on the board is giving me hope right now!

mm&j Apprentice
mm&j
Posted
  • Author

Hi, I haven't been on since yesterday (gardening all day here in PA, just gorgeous today after some snow and cold in late April) and I appreciate everyone who responded. It's really exciting for me :rolleyes: to get answers. I'm new to any kind of message boards and I am getting hooked. I feel better about brainfog. I can relate to it ALL.

Thanks again,

mm&j (Susie)

Lisa Mentor
Lisa
Posted
Hi, I haven't been on since yesterday (gardening all day here in PA, just gorgeous today after some snow and cold in late April) and I appreciate everyone who responded. It's really exciting for me :rolleyes: to get answers. I'm new to any kind of message boards and I am getting hooked. I feel better about brainfog. I can relate to it ALL.

Thanks again,

mm&j (Susie)

Susie:

You will soon find, if not already, that whatever you need to know about celiac can be found here, with wonderful support from really great, knowledgeable, giving people.

mm&j Apprentice
mm&j
Posted
  • Author
Susie:

You will soon find, if not already, that whatever you need to know about celiac can be found here, with wonderful support from really great, knowledgeable, giving people.

From what I've seen so far that has been true, and you seem to be at the top of the list, always answering and helping people out (especially the new ones)

Thanks...and your goslings are gorgeous!

Susie

Lisa Mentor
Lisa
Posted
From what I've seen so far that has been true, and you seem to be at the top of the list, always answering and helping people out (especially the new ones)

Thanks...and your goslings are gorgeous!

Susie

You are very kind and thank you. :)

There are so, so many that have a much greater knowledge than I. It is always interesting to read and learn. I am glad that you feel at home here, as I hope others do as well.

ginap73 Apprentice
ginap73
Posted

Going gluten free helped my art. my sculptures went from ok, to great overnight :P . on days i eat gluten accidentally, i can't think well enough to do much of anything. :(

I think it's deffinitly related to gluten.

num1habsfan Rising Star
num1habsfan
Posted
Driving down the road and forgetting where you are going.

Starting a sentence and totally loosing your train of thought.

Not being able to verbalize the correct word of a discription.

Not being able to count money back, which you have done all you life and get a blank.

Lack of concentration.

Reading and not remembering what you have just read.

A feeling like you are in a cloud.

....just of few of my brain fog happenings or lack of.

Couldnt have said it better!! Thats exactly the troubles I have (even the one dealing with money since you know...thats almost my career)..I can also add putting something down and then within a couple of minutes forgetting where you placed it even tho you put it in a place you know you'd remember...'

My biggest challenge with brainfog os try explaining something like this to teachers or fellow classmates :blink: They all think its just a poor excuse not to do my food and a poor excuse for doing bad on exams or whatever!!

~ Lisa ~

mm&j Apprentice
mm&j
Posted
  • Author

It has been 2 1/2 weeks for me of gluten-free eating. I still feel quite "fogged' (now that I understand what brainfog is)...what do you think the time aspect shoud be? I just have no idea as to when I will have my "old" mind back. Maybe never! Maybe I'm still getting some gluten somewhere, or maybe still detoxing, I don't know. I'm still very fatigued and does anyone have extreme back pain? Haven't heard that mentioned much and maybe it is unrelated.

Thanks,

mm&j (Susie)

Lisa Mentor
Lisa
Posted

Susie:

I would recommend getting some B-12 Sublingual tablets. You put them under your tongue and it goes directly into your blood stream. Or you can request some B-12 shots from your doctor. That helped me tremendously. I had shots weekly for about a month, then once a month. Now I take the tablets daily. I am sure that you will see a great improvement in your fatigue and brain fog. I have been gluten free for almost two year and I am about 95% back to normal. It takes time.

You may need to look into being anemic as well.

Regarding your backache...It was chronic for me for many years, but after being gluten free, I have had no pain (other than gardener's pain <_< )

It will take some time to heal and to get your body back. But everyday gluten free is one day closer to better health in all aspects.

mm&j Apprentice
mm&j
Posted
  • Author
Susie:

I would recommend getting some B-12 Sublingual tablets. You put them under your tongue and it goes directly into your blood stream. Or you can request some B-12 shots from your doctor. That helped me tremendously. I had shots weekly for about a month, then once a month. Now I take the tablets daily. I am sure that you will see a great improvement in your fatigue and brain fog. I have been gluten free for almost two year and I am about 95% back to normal. It takes time.

You may need to look into being anemic as well.

Regarding your backache...It was chronic for me for many years, but after being gluten free, I have had no pain (other than gardener's pain <_< )

It will take some time to heal and to get your body back. But everyday gluten free is one day closer to better health in all aspects.

You are such a help! Thanks again.

I did order some of those B12 tablets so they probably need a little more time to work, (and I have been gardening a lot lately, also).

I will keep with everything and realize that it does take TIME.

Susie

JNBunnie1 Community Regular
JNBunnie1
Posted

I have a good one. I have always worn glasses, since second grade. My vision is so poor that without my glasses, I literally can't walk around unfamiliar places without assistance. One day I went to go look for my glasses, spent about five minutes frantically searching, AND THEY WERE ON MY FACE. Yeah. I know what you mean about the brain fog.....

I also had some back pain issues, Susie, but I actually found that it went away the more exercise I got, so it's probably different than your 'normal' back pain. I had it in the upper back too, which is unusual. I also feel more energetic when I eat lots of eggs. If you tolerate them, organic or cage free eggs are a very good source of energy and vitamins, as long as you eat the yolk. MY favorite is scrambled eggs with cheese and diced tomato and avocado. It works if you take out any of the ingredients too, like no cheese or no avocado. It's a really nice easy dinner. I eat eggs five days a week usually and I've never felt better.

Archived

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

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


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.