Celiac disease is tough. And I don’t just mean it’s tough to have…which it is.
But the diagnosis itself can be really tough because the symptoms of celiac disease for one person can be totally different than the symptoms for the next person. I have heard from countless celiacs since I started my blog. And their symptoms before diagnosis were all over the map: stomach aches, diarrhea, weight loss, bad skin, bone pain, etc.
But many of them mentioned one maddening symptom above all else.
The one that is hard to put your finger on. The one that is so difficult for people without celiac disease to understand. And the one that is even more challenging to explain.
This symptom is brain fog.
What is brain fog?
Brain fog is the inability to think clearly.
It’s feeling a bit “off” without being able to clarify exactly what you’re feeling.
It’s the loss of your mental sharpness.
It’s the forgetting of words or names that should come to you easily but somehow now escape you.
It’s getting sidetracked mid-sentence and then forgetting what you were saying.
And it’s ungodly frustrating. As a matter of fact, I put this next to sheer exhaustion as my two worse symptoms when I get glutened.
I try to stay sharp; both physically and mentally. I do the NY Times crossword puzzle every morning to start my day. (Well…”attempt” to do would be more accurate. Still cannot even touch Saturday’s puzzle. I mean seriously? A four letter word for “catalan article”??)
I find this gets my brain challenged bright and early and sets me on the right mental path for the rest of the day.
But when I’m in a brain fog state? Forget about it. Nothing helps.
If you want to read an interesting article from the medical community about the gluten-brain connection, here you go. Here’s a sentence that jumped out at me:
“Many adult celiacs who have not been diagnosed and are not following a strict gluten-free diet have some of the same symptoms as persons diagnosed with schizophrenia and other mental, psychological, or emotional disorders.”
Yowsa! It still just blows me away that something that can be of absolutely no harm to so many people (I’m referring to gluten) can be so debilitating to the 1% with celiac disease.
So the next time you’re talking to me and you get the feeling that I’m just not there, it’s nothing personal I assure you. It’s just the fog of celiac disease.
Great post……how do those of us who strictly adhere to being gluten free deal with persistent symptoms of brain fog and fatigue?
Patience. Lots and lots of patience. And a few naps thrown in there for good measure.
I’ve been gluten free for like 2 weeks and I still have brain fog and my joints still ache a lot how long will it take to feel better ? Is it normal for the symptoms to last for more than 2 weeks
Great post loved it try to include a more in depth vuision in to the future of gluten next time THE GLUTEN DUDE thank you for blessing me with this post
My celiac disease was diagnosed about 5 years ago and from time to time I developed brain fog without attributing it to celiac disease. I’m also hypothyroid and I have taken Synthroid routinely for many years. Recently I have had to take increasing doses of Synthroid because my FSH was getting higher. Looking back, the brain fog seems to have started when I increased the thyroid. Does anybody else relate the brain fog to high doses of Synthroid (thyroid hormone)?
I know well of the brain fog. Been dealing with it for 8 years. I think it depends on how long you were undiagnosed and how much damage there is as to how fast you heal and the brainfog subsides. At first I.had to stop eating gluten, soy, dairy, cooking oils, corn coffee to avoid the brainfog. Now 4 years later I only get it when I accidentally eat gluten. There is hope but it takes time.
So can you eat unlimited amounts of dairy, corn, etc. now and still not get brain fog? I feel I’m in the same boat. What symptoms did you have when eating those like dairy? Reason I ask is cause I get brain fog, abdominal pain, mouth ulcers from dairy and wondering if that would possibly clear up and I can eat dairy again. Your post gives me hope.
I’ve been strictly gluten free (and grain free to be precise) for 8 months, and the ‘brain fog’ is still present, and I feel it is even getting a little worse. My coeliac disease went undiagnosed for around a decade, and I wonder if there are some long term cognitive effects?
I’m grain free as well and the fog didn’t really start to clear until I gave up all dairy as well. Other additives and things to avoid as a suggestion would be carrageenan, aspartame, garlic… possibly can than gum. Stick to whole foods and honestly if you need calories like I do buy goya canned white red or black beans. Never had a problem with them but for some reason chickpeas bother me. Hopefully you figure this out. Good luck Tafa or Tara
I’ve been white flour free for 2 weeks now and mostly gluten free. I cannot BELIEVE how much less arthritis pain I have. My allergies have cleared up, brain fog is gone and the (easy) recipes I find online for a gluten free diet are endless, and on my ipod touch apps. Trust me, if I can go gluten free anyone can. I was a huge bread/pasta addict and something finally clicked. Now, I don’t crave it at all. I’m going to test out some recipes for gluten free breads, but for now I really enjoy Udi’s breads and bagels (gluten free). Make sure to defrost them in the micro. for 30 seconds, then toast them. Best of health to you all.
Thanks Happy….glad to hear it’s helping you.
Thanks a lot. Find your blog very helpful
If you have celiac and because of it brain fog,
does the brain fog always disappear when you are gluthen-free?
or does it last forever in some cases?
best,
katha
It goes away for me. Unless of course I’m just so used to it.
I had never heard about brain fog related to gluten. The term really hits it on the head for how I feel. I don’t have celiac, but am intolerant. I was tested 4 years ago and had the anti-bodies in my blood.
I felt much better taking gluten out of my diet even though it was really painful to do. Now it seems like I am feeling worse again and I am not sure why. I try to be gluten free in all things.
My allergies are flaring up again, the pain in my feet is back, intestines never seem right, swelling everywhere, very emotional, little bumps on my skin popping up all the time. It seems like I must be getting gluten in my system somehow, but can’t figure it out. Not sleeping well, really tired…Also, my weight has increased and I can’t seem to lose weight! The brain fog is awful. I feel so stupid.
Feeling very let down right now. I have survived many horrible things in my life (ovarian cancer, Adenomyosis , endometriosis, hyperemesis gravidarum) but am now not sure how/what to do to feel better. Everything is suffering- my family, work, me…I’m at a loss.
Any advice? Sound familiar to anyone? Thanks!
HAVE YOU BEEN TESTED FOR ADRENAL FATIGUE? YOU ARE STATING ALL THE USUAL SYMPTOMS FOR ADRENAL FATIGUE.
Also- Has anyone ever noticed that you have a different reaction to different kinds of gluten?
I know I have accidentally eaten gluten a few times. A couple times at restaurants, I had asked specifically about everything, but before the meal was over, I was clammy, felt like I had the flu- dizzy, nauseated, gassy, etc… this is why I am afraid to eat out! Besides the common “rolling of the eyes” and “you are so annoying “looks I get.
Other times, the reactions have been much more minor.
Just wondering if different types of gluten cause different reactions.
I am not sure but Last year I ate fresh rye bread and and Holly Hell the cramps and back end issues were so bad. Thats when I went to my doc and said I think I am celiac. Yup . That being said any other Gluten (wheat) encounters after that were nothing like that. Mostly feel like I have the flu. nausea, mild headache , aches and pains, fatigue. I have wondered about this though.
As a well controlled coeliac i have developed cough related asthma and understand that these diseases are linked but i also suffer from time to time with terrible itchyness of my feet. This is so bad that it drives me to distraction. As yet i have not had anyone identify with me re these symptoms. Does anyone else suffer ? I also get a rash but i can get the itching alone. It is definatlyely NOT fungal and my GP does not sympathise with me at all. Am i alone ??
Gluten free for two years. Ate a slice of pizza and its been terrible! It didn’t hit me right away but rather couple days later. Lightheaded foggy have the runs feel unsteady and feel like I’ve been hit by a bus. Vertigo! I can’t wait till the end of the day to go straight into my bed. This is horrible. Learned my lesson for sure. Not worth it! Any advice????
http://glutendude.com/celiac/help-i-have-two-days-to-heal/
Thank you!!!!!
Ugh!
I can relate to this so much! I used to get in trouble for “not paying attention” or “being lazy” when I was really exhausted & couldn’t focus… to the point where I couldn’t see very clearly!
I’ve always been teased about bumping into walls & corners and being really clumsy & forgetful like leaving stuff in the wrong places, not being able to find something right in front of me or remember what somebody just said, etc.
but after I was diagnosed this summer & went 100% gfree I swear all of that has gotten unbelieveably better, and the people close to me who used to make fun of me have noticed too. Some people have mentioned that I have more energy, more focus, and that my “eyes look clearer & brighter.”
I definitely can tell a difference myself! My grades went up by 2 letter grades this summer! It was SO much easier to focus in class (that might have had to do with the fact that my stomach was killing me everyday!)
Anyway – awesome post
<3 Megan
I was diagnosed with celiac disease almost 40 years ago. Method was a small intestine biopsy, and I have been on a gf diet all this time. Thankfully, there are many more food choices today.
I experience brain fog many days. I have RIPN, Radiation Induced Peripheral Neuropathy and lymphedema in my right arm and hand s/p breast cancer and lymph node removal in 1997.
The brain fog is very troublesome. And it is exhausting. I take levothyroid, anti-depressants and anti-anxiety meds daily. My psychiatrist started me on 60 mg cymbalta a month ago, and my energy level is improving greatly. But today is a brain fog day. Pooh!
Those of you taking meds might want to check out the website: http://www.glutenfreemeds.com, to make sure there is no gluten in what your taking.
How long does usually take for the brain fog to dissapear when going TOTALLY gluten free? I’ve been 8 weeks now strictly gluten free but I’m still suffering 24 brain fog. Sometimes it gets better, sometimes worse but this weird feeling in my whole head/mind stays with me all the time (short term memory loss, lack of concentration, lack of energy…) .
Thanks!
I’ve had these exact same issues and they’d gotten so bad the last five months, I thought I had the beginnings of Alzheimer’s. I started the 10 Day detox by dr hyman- designed to get you off of sugar which I eat boat loads of- and three days in I felt AMAZING. I also have watched no TV which helps tremendously. I watched some yesterday and felt the same lack of concentration that I was used to kick in once i was finished. today though, I had some gf almond meal by Red Mill today and literally three or four bites in my symptoms came back. (Discovered online they’re not so reputable). I was astonished. Dealing with it now. But before dinner, my mind was clear, I could think and be present and my focus was amazing. Bottom line: try no sugar, no gluten and no TV/iPod/iPhone/computer (minus simple work stuff) for ten days. I can’t tell you how good I felt by day four!!! Or try the 10 day detox. My god does it work. Hope this helps.
I am a medical doctor who qualified 30 years ago. Back then we were taught that coeliac disease presented as diarrhoea and weight loss, failure to thrive in children but never the bloating, flatulence, joint pains, headaches,brain fog,psychiatric problems, poor energy etc I have suffered.Well 30 years later I had an endoscopy in the workup for a gastric sleeve operation because I never do any of the exercise I recommend to patients because I never feel well and the duodenum was atrophic.That was all the persuasion I needed to go on a gluten free diet. A few weeks later feeling a lot better, but stuck in a hotel room at a conference where the minibar was not glutenfree I decided it was time for a gluten challenge. After 40 years of constipation I had 5 days of diarrhoea, and now my bowels move more than regularly. No one ever understood when I said I had brain fog, a term I think I picked up from a patient, certainly not through my medical training.
The brain fog is the worst. Followed by the heartburn. I think what is so frustrating about the fog is if you have accidentally ingested gluten and you have celiac disease, then that means you have at least several days of fog ahead. I am a writer and the fog is a total inspiration killer.
Thank you for writing this. Additionally, I get brain fog when I eat any of the myriad of food intolerances I developed during my long road through illness. It is very frustrating. I’ve thought about making a list of do’s and dont’s for during brain fog, (like, don’t have blind faith in anyone) but how would I remember there’s even a list?! It’s like being the scarecrow – if I only had a brain. Then I’m panicky because I have no control of the ship. Afterwards, I’m left with trying to undo some of those decisions made while walking headless into situations. I’m very grateful to now have clear days in between!! For much of my long life, that was not there.
The article you cite here leaves me with no unanswered questions. That’s a plus 🙂 Thank you again!
I was diagnosed with Celiac last year. Ever since September I have felt these EXACT ‘Brain Fog’ symptoms you describe. It has halved my quality of life. I never associated this with Celiac Disease until now! I’ve often cheated with my diet so I’m going to go 100% gluten free and see if the condition improves. I’ve been convinced this was the early warning sign of Schizophrenia and completely stopped smoking weed as a result of that. Thank you very much for the insightful article.
Brain fog just flat ass sucks.on top of it I’ve lost major hearing and vision.hard to get out of bed.getting very depressed.have terrible nerve damage.cant remember the feeling of being a husband and a father,just feel like a damn patient.been going on for two years.tinnitus is so bad it’s driving me nuts,eyes blurry and out of focus. Been to the mayo clinic,Swedish clinic in Seattle, university of Kentucky and vanderbelt in Nashville.they think I have more than just celiac but that’s all they have ruled in.my newest neurogist said I don’t have a vestibular disorder.im in a 24/7 panic! I feel like I’m living in a dream. I used to love to hunt and fish and take my family with. Shit,now I have a hard time remembering the last time I ate or drank water. This disease is horrible and I pray to the lord Jesus that he will heal me.
I feel your pain man. Celiac disease is a truly life changing, and there’s so little awareness about it’s fogging symptoms out there. Just recently I started taking heavy-duty Vitamin D supplements to clear the Brain Fog. This, alongside a complete gluten-free diet has helped an unspeakable amount. Even a trace amount of gluten can stop you absorbing this vital vitamin and starve your brain of the fuel it needs. Sounds cliché, but drink plenty of water as this helps blood circulation, and will therefore get more vitamin D to your brain. Stay strong mate, I hope this helps you.
I feel your pain man. Hope you’re coping okay. Brain fog is truly life-changing. I’ve just recently started taking 20,000 IU Vitamin D supplements (That’s heavy duty) This has improved the condition an unspeakable amount. Even a trace amount of gluten starves your brain of vital nutrients it needs to function at it’s highest speed. Taking vitamin D, alongside a completely gluten free diet may help you too. Also, it’s cliché but try drinking copious amounts of water to help your blood circulation, which will therefore get more vitamin D to your brain. Good luck out there mate and I hope this helps you.
I’ll tell you this,if it wasn’t for the gluten dude and the efforts he puts to listening and truly understanding this shitty disease I don’t think I would be here. My hats off to you bud.you help people more than you probably know man!!! Thanks for being who you are man!!!!
Been having bad brain fog. Cant hardly think at times to form a thought. Tryng gluten free i hope it works. Love reading comments.
Yes to everything about brain fog! Beyond frustrating and hard to explain. So glad I found your page!
In addition to the brain fog I get stinging out of focus eyes – when it’s really bad I need to splash water on my eyes every 15 minutes or so and when I look across a room it’s like my vision is jumping and I can’t pan smoothly across the view. Over the years the doctors have just told me to get my eyes tested but I now know it’s the gluten that causes it. I’ve been off gluten for 2 months now but yesterday I thought I’d risk it when a business associate had ordered a bacon roll when we met for a breakfast meeting; within 2 hours my eyes were red and stinging and I had the worst ever brain fog and fatigue. It was like having flu, completely exhausted, unable to think straight and unable even to bend down to pick up a piece of paper at one stage. But then I was gluten free the rest of the day and at 7.30am this morning I was out on the hills of the Scottish Borders doing bootcamp in the snow with 18 other mad Scots and feeling back to normal, sprinting up the hill and doing press-ups and squats. Amazing how intense it was after 2 months off the gluten, but the good news for me was how quickly I recovered, feeling full of energy today and no ongoing symptoms. I will never risk eating gluten again out of politeness, just not worth it.
I’ve noticed, if you still have brain fog while off gluten, try eliminating grains, dairy, corn and soy and eat a more whole foods type of diet. Those of us that are more heavily damaged may need to avoid these to really heal. As someone else posted, they had to avoid many foods at first and than they got better and could reintroduce problematic foods. There is also a study on refractory Celiac’s who only got better on a Paleo diet, than who could revert to a standard gluten free diet without symptoms returning. Gives some hope. Good luck guys, this is a genuine struggle and we are all in it together.
What I think helps me for some reason is a lot of pineapple. I don’t know why but when I’ve been glutened I normally have this and it really helps.
I feel like am not really in the world is that brain fog .I don’t know what am experiencing right now I have gut related problems could that be a sign of gluten intolerance.this thing is ruining my life .please help
I’ve been suffering with these exact symptoms for almost years now. I’ve been for a brain scan and got the all clear. Nothing physically wrong with my mind. Doctors think I have some form of disassociation disorder such as depersonalization. Everybody’s different and you guys may not have this issue, but it could be worth looking into. It is known to severely affect your thinking. A lot of sufferers have trouble with their internal monologue, naming names, motor skills, vision etc. It’s coping mechanism that disassociates you from your own thoughts, if you’re seperated from your own thoughts, you will find they are dumber and harder to control because there’s a certain inability to focus on them. It’s an anxiety illness, so excising and drinking a lot of water always helps, and as the issue is not being able to focus on one’s own thoughts, sleeping and eating brain foods help as these things improve focus. Anxiety pills also help. You have to find the right one though as some anxiety pills worsen your cognitive abilities during time you’re on them. Keep a positive attitude as this helps reduce anxiety. You’ve gotta avoid gluten if you’re celiac, and you could try avoiding diary too. I’ve noticed how much these things help so far, so I’m gonna try them rigorously and update you all in a few months. Everyone on this page is fighting their own tremendous battle and doing a fantastic job at it. For this I have ever lasting respect for you all. Good luck to you, chances are theres nothing physically wrong with your brain just like there isn’t with mine, and with the right attitude and determination I know you can snap out of it.
almost 2 years*.
Your comment hit the spot. That’s what my doctors has told me too with the depersonalization. Crazy huh? I’ve tried their meds but have had terrible experiences with both that I have tried. The first one nearly killed me because I had a reaction to it. So I’ve been off of it now trying to figure it out naturally, started a gluten free diet. It has been about a week and a half.
Sorry to hear about that mate. Strange feeling isn’t it, you just wanna throw freezing water over your face and snap out of it but its impossible. Out of interest what meds were you prescribed? I’ve found anti-anxiety pills work really well for me. Really improved my cognitive abilities and brought me closer to reality.
Does anyone with brain fog have a good day bad day pattern ?..one day your fog is dibilitating the next day you can just about function and it goes in this pattern but never getting more than 50% on good days. I would be interested in knowing if anyone else experiences this pattern
Collette….I just stumbled upon your comment and I this is me to a T! I have what I call a good day…and the next….brain fog.
I was diagnosed with celiac at 1 year of age…my parents were planning my funeral as a doctor from Ames Iowa wouldn’t give up. I weighed 14 pounds at 2 years old, when I got that diagnosis, we were told it’s possible to overcome and grow out of. As I did quit having any problems, I started to come in contact with food, and everyday household items nothing bothered me and my body was doing great, minus my memory and my teeth, and some major depression and anger that I couldn’t explain. I am 29 now 30 in march and I now have a reaction that I never would wish on anyone I gave my kids crackers and my hand broke our first and all downhill from there. I can’t remember where my keys go right after I put them down. My eye sight is horrible and I lost 68 pounds in 3 months. I can’t begin to explain my fear my family is a case study well they should be, celiac 1 -intestinal cancer – never knew until it was to late celiac 2 – 12% kidney function waiting for transplant never knew just thought it was diabetes. Celiac 3 melanoma stage 4 – in remission but now diagnosed with celiac my 2 out of three kids now diagnosed early on (God gave me a break) No one can truly understand the heartbreak of this life my son barely hit me yesterday playing and my throat is covered in a bruise ….I can’t tell you what happened or why he told me ….I’ve been to doctors all over Iowa …..2 time diagnosis is an eye roller around here …..Midwest doctors any ideas ?
Poop