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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Brain Fog
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70 posts in this topic

Whenever I talk about brain fog and celiac, my husband takes on this skeptical aire and scoffs a bit (well, a lot really). Tonight, he explained that everytime I mention it, he remembers the movie Joe Vs the Volcano and in particular the scene where Meg Ryan says, "You didn't get a second opinion for something called a "brain cloud?"" He still doesn't quite "get it." I haven't even been gluten-free yet 2 weeks after all. :P

I was hoping to get all of your experiences with brain fog in one place so that I can convieniently share it with him, and maybe he'll take it a little more seriously. ;)

Thanks! :D

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Just to say firstly, my test hasn't come through yet, but I have all the symptoms and a daughter who's tested positive.

I have brain fog too. It feels like I've got stuffing in my head. Like its just full of it, so much so it's hard to think or concentrate on anything. I'm constantly tired. It feels like its hard work to think and concentrate fully. Its like I'm not really 'here'. Desperate for a clear head. Some days are worse/better than others. Todays a bad day :(

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Aha the brain fog scoff, i too have been there! Sigh! My brain fog is almost like i can't concentrate on anything, i can sit doing nothing for a couple of hours without noticing, almost like swimming through time. Like that state between being asleep and awake, almost physically shaking your head to get rid of a fog, but it doesnt go. A heady drunkeness without being drunk!

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For me it was an inability to come up with words. After going gluten-free the thought went through my head that I felt like I had just had a "vocabulary infusion".

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Me too, I'm a lot more switched on since I went gluten-free. I'd been struggling at work for a few months before I got DX'd. My workmates have noticed a return to the old me since I've gone gluten free, without a doubt. In fact If I think back a bit, I've been making jokes for years that I felt I was losing more braincells than most people my age.

Don't know if anyone here watches The Simpsons, but I feel like Homer when he had the crayon removed from his brain. :D

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For me, it is inability to focus and retain information. My kids could tell me which friends they were going to, and five minutes later I would have to ask them again. Sometimes, I have no recollection of people telling me things that they swear they told me.

It's walking down the garden to the freezer, and forgetting what on earth it was I wanted from there.

It's standing in front of the ATM for five minutes before I finally recall my PIN number.

It's getting stressed in a room full of people because everyone is talking, and it makes it even harder to focus. There is just a total overload of random information and it feels like there is so much I cannot process any of it.

Whole days can pass by, and I will not know how on earth it got to that time. I can't particularly recall doing anything time consuming, but then tasks seem to take a lot longer than they would normally probably due to lack of focus.

At it's absolute worst, I felt so overwhelmed that I didn't feel like I was on the same planet as other people anymore. It's hard to laugh at a joke, when you need to hear it three times to process what you are being told.

When things are really bad, I also feel emotionless - like nothing really matters and it can all just pass me by and will sort itself out.

I would need to reread the same page of a book over and over to understand the story, and have often had to skip back on a movie because I didn't process what was just said.

I also found myself having to stop halfway through saying something, because I couldn't for the life of me think what I was talking about.

It seemed to me that my spacial awareness was all out of whack too. I would pass through a door and smack my shoulder or wrist on the doorframe, trip over things I was trying to walk around or step over, knock things over etc.

And the tiredness. Always that nagging exhaustion, no matter how much sleep you had.

I suspect that I have gone into shops/banks and have been so spaced out that they probably thought I was on drugs.

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Mine felt very physical (like the stuffing description). I would find myself physically shaking my head to try and clear it. . . as if I could shake it away.

Also had problems with memory (did I eat lunch? what did I have?)

and do dumb stuff like go out and get the mail, and then absent-mindedly place it in the fridge when I went there next to get something. I'd go back hours later and wonder why the mail was in the fridge.

Cara

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I had my blood test yesterday so I haven't had a diagnosis yet, but mine is like having compressed air at the back of my head. Everything feels heavy. My thoughts conflict with one another. I also have OCD when I eat wheat/gluten and think of terrifying and anxious thoughts. Thoughts that make no sense. Everyone is supposed to get random though traffic but it's as if my thoughts do not "flow freely" when I'm glutened/wheated up. Everything comes crashing down and appears to be doom and gloom. I'm incredibly angry, too, and I have been known to jump down people's throats.

When I'm off gluten, none of the above happens and I am a peaceful, happy and calm person. It's as if I'm Jekkyl and Hyde. :huh:

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It seemed to me that my spacial awareness was all out of whack too. I would pass through a door and smack my shoulder or wrist on the doorframe, trip over things I was trying to walk around or step over, knock things over etc.

This.

I've had this for the last few months. I'm constantly smacking my shoulder off doorframes, dropping cards, keys etc. I'm generally very good with spacial awareness, I was always very sporty, but since the celiac disease came on it's been a clumsy-fest. I'm hoping that'll go away as things heal though.

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These are excellent descriptions and a big help to me as many of them describe my trouble too. Keep 'em comin' and I'll have my hubby read this thread tonight. I may even send the link to my sis who laughs and says "that's just you!" :rolleyes:

Thanks soooo much! :D

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Ask your husband if he ever took an antihistamine that left him feeling "out of it", like his head wasn't attached to the rest of him. If he has, then he knows what it was like for me 24/7 - yes, I'd wake up in the middle of the night with brain fog. When it was at it's worst, it was nothing short of frightening, and I am no hypochondriac like Joe in the movie. In fact, I'm a bit of a hard head when it comes to consulting with doctors. But I would get it so severely that my eyes wouldn't focus. Gluten was attacking my brain, most probably a plaque that was forming as a result of repeatedly ingesting something my body couldn't handle.

Within a few months of being gluten free, I was free of brain fog. It's also the first thing to return if I am cross contaminated.

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For me, it is inability to focus and retain information. My kids could tell me which friends they were going to, and five minutes later I would have to ask them again. Sometimes, I have no recollection of people telling me things that they swear they told me.

It's walking down the garden to the freezer, and forgetting what on earth it was I wanted from there.

It's standing in front of the ATM for five minutes before I finally recall my PIN number.

It's getting stressed in a room full of people because everyone is talking, and it makes it even harder to focus. There is just a total overload of random information and it feels like there is so much I cannot process any of it.

Whole days can pass by, and I will not know how on earth it got to that time. I can't particularly recall doing anything time consuming, but then tasks seem to take a lot longer than they would normally probably due to lack of focus.

At it's absolute worst, I felt so overwhelmed that I didn't feel like I was on the same planet as other people anymore. It's hard to laugh at a joke, when you need to hear it three times to process what you are being told.

When things are really bad, I also feel emotionless - like nothing really matters and it can all just pass me by and will sort itself out.

I would need to reread the same page of a book over and over to understand the story, and have often had to skip back on a movie because I didn't process what was just said.

I also found myself having to stop halfway through saying something, because I couldn't for the life of me think what I was talking about.

It seemed to me that my spacial awareness was all out of whack too. I would pass through a door and smack my shoulder or wrist on the doorframe, trip over things I was trying to walk around or step over, knock things over etc.

And the tiredness. Always that nagging exhaustion, no matter how much sleep you had.

I suspect that I have gone into shops/banks and have been so spaced out that they probably thought I was on drugs.

Hawthorn, I nodded to myself all through your post, my experiences were exactly the same.

I am particularly thrilled to no longer be hitting the edges of door frames or smacking into the photocopier as I walked around it, I used to always have bruises.

I couldn't handle having people walk towards me in a narrow corridor, it made my brain nearly explode as I tried to concentrate on not walking into them. And my friends are used to me tipping in their path as we walk side by side.

For me I'd forget things from seconds ago. I was unable to look at a number and then turn the page and write it. Yet I have no problem remembering things in great detail from years ago.

I have so much more energy, I actually have problems managing it. I'm used to coming home from work so tired that I'd be falling asleep by 8.30pm. Now it's 11pm and I know I have to get to sleep because the alarm will go off early, but I'm wide awake. I need to reconcile ingrained habits learned due to constant fatigue with the reality of how much better I actually feel now.

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For me, brain fog is very much like that muzzy-headed feeling you get when you're sick with a flu or virus. I can't focus, can't concentrate, can't remember a damn thing. I can't learn anything new, and I often can't recall things I should know, even to the point of fishing for words. I am "spacey" and can barely get out of the house with everything I need for work... as if I'm any use there. It feels like someone replaced my brain with cotton.

I was trying to add 12 + 8 and honest to god had to count on my fingers. I have a doctorate in a computational field - it shouldn't be that hard! I was going home the other day, and totally lost track of which freeway I was on. I had no memory of taking the exit. Like Cara, I too have put my mail in the fridge. I laughed out loud when I read that because I had done the same thing.

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I would forget what I was saying a lot. I could be in the middle of a story (or sometimes in the middle of a sentence) and just get lost or completely not remember what I was talking about. I think it's gotten a little better, although sometimes I wonder if it's real brain fog or just me being spacey :rolleyes:

There was one really bad day last month - do you all know those fake cobwebs you buy for kids parties on Halloween? It felt like my thoughts and brain were swimming through thick layers of that. AND I had to teach a yoga class that night. I thought, "Oh my goodness, how do I teach and make what I'm saying sound profound? It's just going to come out in broken sentences and sound like nonsense!" But I wrote some important points down and made it through okay. ;)

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As someone with mostly inattentive-type ADD, I have this to say: the brain fog from gluten produces some of the poor working memory/distractibility/poor focus symptoms I get from the ADD. The difference: the gluten fog feels, well, like fog in my head. When I went gluten-free it was like returning to my normal ADD baseline - the gluten exposure had made all those symptoms much worse and not realized it. I am now getting my ADD treated, and interestingly when I got hit with the gluten brain fog a few months ago it was completely unresponsive to Ritalin. Normally the meds make the ole noggin functionally fairly normally until they wear off.

to sum all that up: gluten-induced brain fog may mimic some ADD symptoms, but it feels psychologically different (the 'heavy' or 'foggy' thoughts), and it is unresponsive to Ritalin (methylphenidate). I can't say if the amphetamine (Adderall, Dexedrine) class of drugs is more effective since I haven't tried them. Now if they did there would be an interesting proposition - use the amphetamine ADD drugs to help get through a gluten exposure.

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I can't focus, can't concentrate, can't remember a damn thing.

I had to call my sister the other day. She has lived at her home now for 8 years or so. Numbers never used to be a problem to me. I was like a walking telephone directory and could recall telephone numbers/mobile numbers easily. I had to get the telephone directory out to find the number, then realised I couldn't remember her surname either :blink:

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to sum all that up: gluten-induced brain fog may mimic some ADD symptoms, but it feels psychologically different (the 'heavy' or 'foggy' thoughts), and it is unresponsive to Ritalin (methylphenidate). I can't say if the amphetamine (Adderall, Dexedrine) class of drugs is more effective since I haven't tried them. Now if they did there would be an interesting proposition - use the amphetamine ADD drugs to help get through a gluten exposure.

That's really interesting. I remember watching a documentary about ADD a few years ago and thinking I shared so many of the attention issues they were describing (tendency to just stare off into space, inability to concentrate) but it also seemed odd to me since I wasn't like that as a child, it was adult me relating. Now I realise it was brain fog. It's interesting to read that you find the symptoms similar but unresponsive to your medication. Have to wonder about so many of those kids out there.

Also, this sounds weird but sharing these particular symptoms with you all makes me feel warm and fuzzy. Most people can relate at least on some level to the gastro stuff etc, but for SO many years I was the only person I knew who couldn't walk in a straight line without walking into something.

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Hubby hasn't read this thread yet. I was so sick last night after being glutened, he did most of the work entertaining the boys and putting them to bed. The poor guy was beat! He'll try to read it tonight. I'll be able to take care of the boys more as my cramping is not as intense. :P

In relation to my own topic... I was reading Gluten-Free for Dummies today, and I spent about 2 minutes re-reading a paragraph. When I finally was able to focus enough to comprehend it, it was just a simple overview about avoiding cc in the kitchen. But you would have thought I was trying to read Chaucer in Middle English! :blink:

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Mine felt very physical (like the stuffing description). I would find myself physically shaking my head to try and clear it. . . as if I could shake it away.

Also had problems with memory (did I eat lunch? what did I have?)

and do dumb stuff like go out and get the mail, and then absent-mindedly place it in the fridge when I went there next to get something. I'd go back hours later and wonder why the mail was in the fridge.

Cara

Lol I've done things like that, but managed to stop short of following through with it. A few times I've nearly put the kettle in the fridge (going to get milk out or putting it back from making a coffee). I can't think of other egs but I've done it quite a bit. Also walked into things and into rooms and forgetting why I was there.

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:lol: Just now, I gave my 1 year old his sippy cup and totally forgot to put the rubber stopper in it that keeps it from leaking. I heard, "trickle, trickle." He was so enthrawled with watching the juice pour out onto the floor! As annoying as that was, he was so cute! :lol:
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I can remeber setting down to lunch one day, picking my fork up and forgetting what it was for then there was a time I forgot what the tv remote was used for and several times I would pull out of my driveway to go to work and forget which way to go. I only lived 5 miles away. Now that was scary.

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I can remeber setting down to lunch one day, picking my fork up and forgetting what it was for then there was a time I forgot what the tv remote was used for and several times I would pull out of my driveway to go to work and forget which way to go. I only lived 5 miles away. Now that was scary.

:blink: No kidding! Should you have been behind the wheel?!

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That's really interesting. I remember watching a documentary about ADD a few years ago and thinking I shared so many of the attention issues they were describing (tendency to just stare off into space, inability to concentrate) but it also seemed odd to me since I wasn't like that as a child, it was adult me relating. Now I realise it was brain fog. It's interesting to read that you find the symptoms similar but unresponsive to your medication. Have to wonder about so many of those kids out there.

It's just occurred to me that there's a statistic that something like 20% of ADD patients are unresponsive to medication...who knows, maybe someone out there is working on research on gastro-related ADD type symptoms?

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My experience is the same as rgarton. For months, I could not figure out why I couldn't concentrate at work after lunch. I just thought I was hitting my afternoon wall. But then, all the GI symptoms, the weight loss, pointed elswhere. Since I've been gluten free almost four months, I can concentrate MUCH better. I noticed that the next monthly cycle at work, I got my work done twice as fast, no exageration. 10 days!!

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My brain fog manifest(s/ed) itself:

  • Problems typing (type the wrong word/misspelling simple words) - go to correct and type the same wrong word, transpose letters and have to retype. My normal typing speed is about 70wpm. When I'm brain fogged I maybe can type 20-30 if I'm lucky.
  • Reading aloud - I'm a very fast reader and normally don't have a problem reading aloud. When fogged in, I can't read a sentence ahead anymore, I have to speak what I'm actually reading, not the words I read 5 words ago.
  • Reading comprehension - severely degraded. Normally I can skim a page of text in a few seconds and extract the relevant points well enough to summarize the page. When fogged this is virtually impossible for me to do.
  • Signing - Have trouble finger spelling words, use wrong pronouns
  • Critical thinking/problem analysis - My logic circuits break down. I have to write things down that I normally would be able to analyze mentally to arrive at a correct conclusion
  • Reflexes/Reaction - I develop a significant lag between stimuli and motor response (respond to a threat or action much slower than I should).
  • Pattern recognition - Becomes very poor, which as a Information Assurance/InfoSec/Information Systems Specialist impacts my ability to spot patterns in log files and data streams.
  • Speaking - Stumble over words, can't remember words, can't remember names, when really badly fogged I can forget what I'm saying in the middle of a conversation.
  • Music - I play several instruments but the worst one affected is percussion. I play mostly at church, but with some excellent, high-caliber, professional {read high-expectation :) } musicians. Brain fog kills my timing, improvisational skills, and look-ahead skills. Also I find that I often have trouble remembering how songs start.
  • Situational Awareness/Analysis - Have distinct trouble integrating multiple inputs and actions of others and/or environment to arrive at a good overall understanding of the environmental context.
  • Stupid/scary stuff :) - Putting cereal in the fridge and milk in the cupboard, forgetting that I just walked the dog and walking her again, forgetting repeatedly what the date when paying bills, and having to ask my wife five times in a row (once for each check I was writing).

I've learned not to run the chainsaw (or any saw for that matter) when in this condition.

The best way I describe it is that it is like how I would feel after staying up for 72 hours straight, working regular shifts at a mentally demanding job the entire time - which I have done. How I feel at the end of that time is exactly how brain fog feels to me.

Edited by Korwyn
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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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