Who Has Or Has Had Brain Fog?

[zebaldwin]

One of my scariest and worst (in my opinion) symptoms is this "brain fog". I have had it for about 4 months that I can remember.

I was just curious how other people describe it...also, is all day 24/7 or sporadic? (mine has been constant...not a single minute of let up)

My blood test came back negative but they are trying to do a little more testing before I just go on the diet and try it. So I am kind of just fishing for some motivation that gluten is what it really is.

I would love to hear from other people who have suffered this ridiculous symptom

[ravenwoodglass]

My brain fog got so severe that I couldn't read any more because I couldn't remember one sentence when I would start another, I couldn't name a fork if you held it up in front of me and had times when I would get in my car and not know what to do with the keys in my hand. I was very fearful that I was developing dementia or something along those lines. I also had severe balance issues, ataxia caused by celiac related brain lesions. It did take a while to resolve but it did resolve after I had been gluten free for a few months. I did supplement with sublingual B12 for a long time after diagnosis and I feel that did help quite a bit.

[India]

I have it sporadically. It's a real pain that I don't know how useful or useless I'll be on any given day but it sounds like you have it much worse. Food intolerances - which, like the brain fog, only appeared after going gluten-free - seem to be the cause of mine and fructose is definitely one problem. Took me a while to figure that out because I was eating lots of fruit, trying to be all healthy. I would definitely look into whether you have other food issues. Hope things improve for you soon.

[India]

So sorry - just realised that you're not yet gluten-free. Hopefully that will improve things for you.

[zebaldwin]

I can usually function fine. It's almost like I can do things but don't really know how I did them after they are done. I am in college (my last year) and have been able to keep up in class...but it is just so scary.

Mine is all the time and I feel like I'm a little drunk...or getting a fever...or something. It's so hard to explain.

I'm just losing hope fast and feel like I'm losing complete grip on who I used to be.

By the way, I dont even have any possible answers after seeing many doctors, specialists, and therapists...this is almost my last hope.

[IrishHeart]

I can usually function fine. It's almost like I can do things but don't really know how I did them after they are done. I am in college (my last year) and have been able to keep up in class...but it is just so scary.

Mine is all the time and I feel like I'm a little drunk...or getting a fever...or something. It's so hard to explain.

I'm just losing hope fast and feel like I'm losing complete grip on who I used to be.

By the way, I dont even have any possible answers after seeing many doctors, specialists, and therapists...this is almost my last hope.

I really do know what you are feeling!!

It IS a very scary feeling! I am amazed that you are doing so well in school dealing with this "sensation." You are not losing your grip, hon; I bet it is the effect of gluten. Many of us on here have had this awful experience. And yes, I have been to all the specialists, too. My brain is "normal" on an MRI. I am "psychologically sound", yet I had this strange feeling like I was sleep walking in my own life. I felt the same way as you describe--- I did things, but later wondered how I did them or looked back on things as if they were "unreal". I felt like I was high or something. I became sad and felt "dark"... I am normally a very happy, vivacious, chatty person!!

I kept saying to my husband, I feel "surreal"...It came on slowly, starting in 2007 "off and on"...and by 2009, I was in real trouble.

It does feel a bit like being drunk, but without the fun. I told my sister I felt as if someone were poisoning me. Like I was drugged. I had it so bad at one point, I felt as if I were living in a bad dream inside my own life. I would walk into the kitchen to make dinner and have to THINK about what the hell I was doing in there. It made me frustrated and I would actually burst into tears because I couldn't handle more than one pot on a burner on the stove. (I am a gourmet cook for pete's sake!) Thinking about what to make for meals made me feel overwhelmed and anxious. Forget doing the bills--took all of my concentration and I made mistakes all the time. If someone were giving me NEW information, I had to write it all down. This was very upsetting to me. My short term memory suffered. (I am the trivial pursuit queen, so imagine my concern when I couldn't recall simple things)

I had to stop reading because I couldn't concentrate or retain what I had just read( This is my passion; I would read 3 books at a time!) I had trouble articulating and had to search for words (I was an English Prof. who spoke in front of large lecture halls without notes!) What the hell was going on??

Obviously, this brain fog affected my whole life!

Often, I would have to hold on to my husband's sleeve when I went out in public. (I have never been shy or afraid of anything in my whole life!)I kept saying "I don't feel like ME anymore". I developed anxiety so bad, I was shaking and would actually cry when he left me alone at home. I was so physically ill --losing 90 lbs. rapidly, my hair falling out, developing burning chronic pain--and to lose my brain function too, was more than I could bear. I thought "I'm going to die before someone figures out what's wrong with me."

I would sometimes walk sideways.

I had to stop driving. That really did me in.

My doctor recommended a psychiatrist!!. The psychiatrist, sensing I was not really mentally ill, when I kept insisting "I don't have anything to be anxious about; something is making me ill", asked me finally... "Do you have food intolerances, by any chance?" (she has them herself)...that's when I started researching, which was very difficult as I had to read things over and over again. I repeated myself while talking and in my writing....I KNEW I was doing it, yet couldn't seem to stop it.

I would ask my family members and friends..."Am I making sense? I feel like I am not speaking properly." They assured me I was...but I felt so weird.

I felt as if my brain were dipped in vaseline. I felt like I was hallucinating sometimes and I was awake half the night for a year and a half because of bizarre dreams. Looking back, 2009-2010 was very difficult and frightening sometimes.

BUT...it has gotten sooo much better in just a few months since going gluten free!

I KNOW when I am accidentally glutened because the first thing that I notice is....I feel strange and "cloudy" in my head and my mood drops like a stone. That's proof enough for me.

I hope you get answers soon! My celiac blood work was NEG. My doctor told me I was right to go gluten-free and that the test is often wrong. I will never eat gluten again because for the first time in three years, I am starting to feel "like me" again.

[zebaldwin]

IrishHeart,

that is so encouraging! And sounds exactly like how I feel! (but it sounds like it was longer for you)

Honestly, the one thing pushing me through right now is my amazement at how I can do things (and sometimes even well) without having any energy or even real sense of what's going on! So if I can do well now, who knows what I could do healthy! (at least that's what I tell myself)

All these symptoms and all the empty answers really are taking a toll...and it's hard not to give up.

I am actually scared to go on the diet just in fear that it wont work and my one hope is gone...but I suppose that's stupid.

Thanks for your reply! And hopefully at some point I can post a happy message on here

Zack

[IrishHeart]

IrishHeart,

that is so encouraging! And sounds exactly like how I feel! (but it sounds like it was longer for you)

Honestly, the one thing pushing me through right now is my amazement at how I can do things (and sometimes even well) without having any energy or even real sense of what's going on! So if I can do well now, who knows what I could do healthy! (at least that's what I tell myself)

All these symptoms and all the empty answers really are taking a toll...and it's hard not to give up.

I am actually scared to go on the diet just in fear that it wont work and my one hope is gone...but I suppose that's stupid.

Thanks for your reply! And hopefully at some point I can post a happy message on here

Zack

Zack,

Yup, me too! I did many things just fine, yet could not recall entirely HOW the hell I did them because I felt like I was exhausted and spacey.

I often wonder how much "smarter" I would have been with full brain power LOL.

And I DO get that part about the fear. It's not stupid to feel that way---I don't blame you one bit. I always say "what if THIS (going gluten-free) isn't it?"...but then, I realize I have made improvements, not only in the brain stuff, but the bowels, too (do not mean to be gross, just honest) -- so I stay the course. Plus, several others have told me they cleared their brains, so THAT encourages me greatly! And frankly, the way things WERE was no way to live.

Hope things improve for you. PLEASE do let me know how things are going!! I am always happy to hear that others are getting better. Plus, it gives me more encouragement, too!!

Cheers,

Ginny

[Jestgar]

Honestly, the one thing pushing me through right now is my amazement at how I can do things (and sometimes even well) without having any energy or even real sense of what's going on! So if I can do well now, who knows what I could do healthy! (at least that's what I tell myself)

This has been my experience. The most difficult, exhausting, brain-taxing things are a snap compared to merely existing while on gluten.

My brain fog was temporally tied to when I ate gluten. By the time I was heading home from work, the lunch fog was starting to clear. If this is the case for you, you could skip the morning gluten and see if you are clearer during classes. Pizza for dinner should keep adequate amounts of gluten in your system for any testing.

[AerinA]

I'm still waiting for the rest of my brain fog to clear. I used to read ALL the time, I was working my way down a long list of classic lit. I haven't been able to read in a year at least. My memory is still pretty bad, but improving--I don't know if I'll ever get those years of my life back, I couldn't have told you what I'd eaten for breakfast most days. It made life pretty hard for everyone. I still sort of wander and move things without realizing it (and then can't find them later), and people have to keep re-explaining TV plots to me because I can't remember who the people are long enough to get through an episode. But I feel much more "alive" now. Hopefully it will continue to get better.

I'm pretty sure that once you're gluten free for awhile, you'll feel better too. It doesn't seem like a very brain-friendly substance.

[zebaldwin]

Thanks again guys...this is all very encouraging!

[Sparks]

I had terrible brain fog. I couldn't even remember the word "iceberg"! I felt like I was getting dementia at 28. Luckily, that seems to be in remission.