Can You Please Describe Your Feeling Of Brain Fog?

[azmom3]

The title says it all. I'd love to hear how everyone experiencing this feels to see if it sounds like me. I feel like a hypochondriac. I am not gluten-free (yet). This is still very new to me, but I am educating myself and will be trying the gluten-free diet. I have not been diagnosed celiac (haven't been tested yet), but my son had a positive blood test.

[Nancym]

I felt like I was getting dumber as I aged. My memory was horrible. I'd come to work and sit in front of the keyboard trying to remember my passwords. I felt sleepy and tired ALL the time, no matter how much I slept. Learning something new was about impossible. Memorizing anything wasn't working either.

It was like someone had replaced my brain with a block of jello.

Honestly, since going gluten-free and DF I feel like my IQ increased at least 20 points.

[DingoGirl]

Nancy described it very well. I remember toward the end, almost losing blocks of time, too. Having entire conversations that I didn't even remember. And, could no longer read books, and I'd been an avid reader, but couldn't follow and retain plots any more. I was down to the simplest of magazines in my reading, many days found it too arduous to even read the newspaper, and didn't remember the contents of articles in magazines just days later. I have never felt dumber in my life, the last year or two before dx.....it is SO good to be reading again, and remembering things!

The brain fog, when it does happen now (rarely), also comes with a bit of depression, but it is generally not severe. Just lethargy and sluggishness....

[Rachel--24]

Brainfog...it was probably my worst and most frightening symptom. Nancy and Susan described it well...for me it feels like I'm trapped....my mind just wont cooperate and even the most simple tasks seem undoable. I couldnt read because my memory was terrible and after one paragraph I'd forget what I'd read and have to start over. I could never get past page one.

I couldnt pay my bills or balance my checkbook....everything that had once come easy to me was all of a sudden an unbearable task. Driving was a nightmare...I'd frequently forget where I was going and if I had a passenger I couldnt hold a conversation and drive at the same time. It was hard enough doing one or the other but two things at once was just too much for me. A couple times I ran red lights because I was in a total fog and even though I saw the lights were red my reaction was too slow and I just never stopped. The memory loss was really bad for me but all of this has improved immensely...actually brainfog and depression were the first symptoms to improve...it was a dramatic improvement only a few days into the diet.

I dont have problems communicating any more...I was finding it hard to keep a conversation because my mind would go totally blank. It always reminded me of an Etch-a-Sketch (remember those?)....like whatever picture or thoughts I had were completely wiped away and I was unable to get them back. If I lost my thoughts mid-conversation....that was it....didnt matter if someone were to "remind" me of what I'd been saying...I still couldnt resume where I'd left off. It was scary stuff.

[Aerin328]

I'm glad to hear I'm not the only one who suffers "brain fog" as a primary symptom! (I just hope it clears up completely - I've only been gluten-free for 25 days, and it has improved some, but I'm also utterly frustrated that my mind is not working like it used to!)

[Rachel--24]

I'm glad to hear I'm not the only one who suffers "brain fog" as a primary symptom! (I just hope it clears up completely - I've only been gluten-free for 25 days, and it has improved some, but I'm also utterly frustrated that my mind is not working like it used to!)

Give it some time....I still have some "foggy" days but nothing like before. Its frusterating though...I know how you feel. It will definately get better with time and adherance to the diet. You will get your mind back.

[Guest cassidy]

A couple of examples:

I am driving and I don't realize the light is green (I never do this otherwise) and I have to turn off the radio so I can concentrate on driving.

I actually put diesel fuel in my non-diesel car. I don't recommend this one.

If people ask me questions (simple ones) I feel overwhelmed and I can't think of the answer.

I wear suits to work and I got out of the car wearing flip flops with my suit (not a good look).

I put the cereal in the fridge.

I feel like I could go on a long road trip and just sit in the car for 10 hours and be perfectly ok with it. I am typically a very responsible person and I feel like I have to double and triple check everything because I make very stupid mistakes and I don't realize it.

[azmom3]

Did any of you have problems in school because of this? I look back to high school and college... I got good grades overall, but sometimes I would re-read the same thing over and over and over again, and each time it seemed new....ask me any questions about it and I couldn't tell you the answers. I always spent so much more time on homework than my friends. I always questioned that maybe I had some sort of learning disability as I just couldn't seem to process the information. It didn't happen all the time but very often. Also, You know how you drive the same route every single day and when you get there, you think...I dont' remember any details of getting here...did I run a stop sign, etc.?? This is how I feel like my day goes. It seems like everything's a blur. I have to rely on a list every single day to get things done and sometimes I'll just stare at the list, not being able to figure out what I should do next. I also have a big sleep problem, can't fall alseep, can't stay asleep and I'm exhausted every day. Is this the same thing?

A couple of examples:

I am driving and I don't realize the light is green (I never do this otherwise) and I have to turn off the radio so I can concentrate on driving.

I actually put diesel fuel in my non-diesel car. I don't recommend this one.

If people ask me questions (simple ones) I feel overwhelmed and I can't think of the answer.

I wear suits to work and I got out of the car wearing flip flops with my suit (not a good look).

I put the cereal in the fridge.

I feel like I could go on a long road trip and just sit in the car for 10 hours and be perfectly ok with it. I am typically a very responsible person and I feel like I have to double and triple check everything because I make very stupid mistakes and I don't realize it.

This sounds like me! I can't listen to the radio and I make the kids be quiet when I feel like this so I can concentrate. I have driven past my exit (the same one I always take) on many occasions just because I feel like I'm in a "zone" or something. I've put cold stuff in the pantry and pantry items in the fridge. I've thrown dishes in the garbage can....

[Aerin328]

Give it some time....I still have some "foggy" days but nothing like before. Its frusterating though...I know how you feel. It will definately get better with time and adherance to the diet. You will get your mind back.

Thanks. That's very good to know. How long do you estimate it took you on the gluten-free diet to pass the majority of your brian fog??

[Nancym]

Did any of you have problems in school because of this? I look back to high school and college... I got good grades overall, but sometimes I would re-read the same thing over and over and over again, and each time it seemed new....ask me any questions about it and I couldn't tell you the answers. I always spent so much more time on homework than my friends. I always questioned that maybe I had some sort of learning disability as I just couldn't seem to process the information. It didn't happen all the time but very often. Also, You know how you drive the same route every single day and when you get there, you think...I dont' remember any details of getting here...did I run a stop sign, etc.??

It didn't hit me until I was out of school, the worst of it came on this new job I had when I couldn't seem to learn the new stuff I needed. It was a monumental task and nothing would stick in my head. I always had a great memory and excellent concetration when I was young.

The driving thing, I think that happens to some extent to everyone, brain fog or not. Sometimes my brain goes on "automatic" and I get to where I'm going with my mind fully engaged in thinking about something else.

My improvement was gradual and I had to figure out other things that were getting to me too, Diary and Soy. Over the 6 months I've been Dairy free and nearly year I've been gluten free, it just got better week by week.

[CarlaB]

I've had the same symptoms as everyone describes. It's really frustrating that I'm an avid reader and like the classics, but you have to have a brain to read them, and mine's gone right now. I had been doing well, but something's getting me the past couple weeks ... I think it's the soy. I hadn't been eating soy, but since I cut out dairy, I added soy. Ugh.

Anyway, if you're not following this post, you now know what brain fog is! I feel like I've had a couple alcoholic beverages, but have not.

My kids will ask me questions a few times before It'll even register that they are talking!

I'm perfectly happy just sitting and doing nothing when normally I'm very active and energetic. It's like being drugged or stoned.

As far as in school, I have my 25th high school reunion this year, so it's been a while! I remember going through high school and college in a daze. Very tired all the time. However, good grades always came easy, I guess my good memory made up for my fog.

[ianm]

It is like an out of body experience. i could see and hear everything going on around me but was completely unable to connect with reality. Driving was the worst. the light would be red and I knew I was supposed to stop but my brain could not make me lift my foot off the accelerator and onto the brake. I would then proceed to go right through the red light. It is a miracle that I didn't kill someone. I was put into special ed because the brain fog was so bad.

[Rachel--24]

Thanks. That's very good to know. How long do you estimate it took you on the gluten-free diet to pass the majority of your brian fog??

Initially...improvement was dramatic and immediate (within one week) but at the time I was very ill, unable to work and just not functioning well at all so the affects of the diet change were very noticeable back then. I've been gluten-free over a year now and still have bouts of brainfog...unrelated to gluten though. I have other intolerances which cause the same "fogginess" but nothing like I went through prior to the diet. It seems like most people here have dealt with brainfog to some degree and I think pretty much everyone does recover from it but it doesnt happen overnight. You'll have good and bad days throughout the healing process but eventually you'll notice fewer bad days and more of the good ones. It'll happen gradually...but one day you'll notice that you dont feel as bad as you once did. Everyone heals differently so you may notice you feel great in a few months....or it may take longer. Hang in there...it does get better.

It is like an out of body experience. i could see and hear everything going on around me but was completely unable to connect with reality. Driving was the worst. the light would be red and I knew I was supposed to stop but my brain could not make me lift my foot off the accelerator and onto the brake. I would then proceed to go right through the red light. It is a miracle that I didn't kill someone. I was put into special ed because the brain fog was so bad.

Yeah...this was my experience too. Ian and I both had very crippling brainfog but I didnt have it all my life....it came on suddenly 3 years ago along with all the other symptoms.

[Kaycee]

I get brain fog too.

It feels like I am there but I am not. A bit like being off my face (whatever that feels like), and it is not pleasant. I get a bit unsociable, I can't contribute anything noteworhty to any conversation and my sense of humour just disappears out the window. It is like I am withdrawing into myself. At work I will be on auto pilot, but any new tasks will not be learnt or dealt with on days like that.

In some ways now I feel it more now when I get glutened than before. I know at the end of my gluten eating years, I was beginning to wonder if I was just getting a bit too old to try new things. I tried doing a new number puzzle sudoku, and I realy believed that was beyond me. My sense of humour had desserted me and I sometimes had a complex about people being against me. I think I might have been a bit unsociable then.

But now it is much much better and I can contribute a lot more, and this is only 6 months down the gluten free path. I am re learning who I am, and so are a lot of other people.

Cathy

[Nancym]

I also want to add, I've been supplementing every sort of B vitamin I can. I have sublingual B12/Folate and a B-50 supplement. That might have also helped me.

[StrongerToday]

I felt stoned. Like when the dr. has you on codeine and you're trying really hard to concentrate but you just can't quite do it. I'd read the ame paragraph over and over and finally give up.

I was definitely on automatic pilot... the worst epsisode was when I was driving and I found myself exiting the freeway. Problem was - I didn't know where I was!!

[Helena]

Haven't been definitively diagnosed with celiac yet---am going to have a biopsy after a positive blood test result--I have experienced some "brain fog" but not as serious as some of the posters here. Has anyone had a mild case of it? I tend to be absentminded . . . have a tendency to leave the stovetop on, my keys in the door, etc. I have a difficult time finding everything I need before leaving my apartment in the morning (or any other time for that matter). Also have a difficult time multitasking or following conversations . . . but since I've gone off wheat, my mom said she noticed that I'm a better listener. Still not good at multitasking, but I've improved.

[eleep]

I definitely lost my sense of humor from brain fog! I was also really irritable and had trouble making decisions -- even at the most minute level. For instance, I would literally find myself occasionally getting into a tizzy about whether I wanted to make breakfast or shower first on mornings when I didn't have somewhere to be immediately!

eleep

[elonwy]

I've always described it as that feeling when you first wake up after a bad night and your brain is all fuzzy and cloudy and stupid, only it doesn't go away. I got glutened last night by some Amy's and I just put my coffee cup in the bathroom sink and walked away. B12 really, really helps. I also get really depressed and lethargic.

grrrr.

Elonwy

Just corrected 8 spelling errors in this. I won a regional spelling bee in high school, but when I'm glutened I can't spell to save my life.

[eleep]

I got glutened last night by some Amy's and I just put my coffee cup in the bathroom sink and walked away.

This sounds exactly like me on gluten!

eleep

[queenofhearts]

Great thread, I missed this the when it first came up, but it's definitely one of the worst symptoms for me, along with fatigue. Both are s-l-o-w-l-y abating, & it's so great, because for years I thought it was just going to go downhill from here on out & I could see myself in a rocking chair with dementia in a few years.

I could still concentrate when I really worked at it, but one little distraction & I was...

Getting lost on the way home from my mother's house (we live an easy 35 minutes away & visit often)

Forgetting names of people I knew well

Getting my clients mixed up (very embarrassing!!!)

Completely blanking out in midsentence, losing words, &c.

Can't wait til it's all gone & I have my brain back!

Leah

[laurelfla]

my brain fog was on the milder side -- i did slowly drive through a red light once and realized it on the other side, but other than that i just mainly felt dumb. in conversations i couldn't remember what i had said when the other person finished responding, and i felt like i was on autopilot sometimes during the day. i guess memory problems were my main symptom. i teach Spanish, and any time a student interrupted the lesson with a question, they had to tell me what i'd been teaching to get me back on track!

[bklynceliac]

I think my most vivid experience with the fog was when playing trivial pursuit with friends. For some reason I could handle the questions fine, but when I tried to roll the dice and move my piece I just couldn't do it correctly. I would move 5 spaces confidently, then realize it was only 4. I'd try it again, and screw it up again. It was like I couldn't get it right no matter how hard I tried to concentrate. It's an awful feeling, like your brain just won't cooperate. My friends still joke that I was cheating on purpose.

Oh, and FYI, when I met with the famed Dr. Susie Lee from the Columbia Celiac Disease Center, she told me brain fog was a much over-rated sympton of Celiac. I beg to differ...