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55 Comments

  1. 1

    Angie from the Land of Oz

    I 100% agree as most of my systems were related to the nervous system and/or behavioral issues. I eliminated gluten from my diet this past July. My mood has lifted, my anxiety is almost non-existent, my concentration issues are gone, my thoughts are clearer and I do not feel like they are racing through my mind. On top of all this, my daily headaches have disappeared. Previous to July – I had headaches almost every day and 2 – 3 migraines per month.

    Reply
    1. 1.1

      Angie from the Land of Oz

      Guess the brain fog reappeared – meant to say symptoms. :)

      Reply
    2. 1.2

      steph

      totally believe this, when i get glutened, i literally turn into an idiot. i can’t think straight and i can’t process information.. like.. i see a stop sign, and i know it says stop – but i can’t comprehend it, i drive through it. fucking gluten brain!

      Reply
  2. 2

    Doug

    I do believe there’s a connection. Before diagnosis I have a panoply of symptoms, one of which was the muscles in my legs randomly contracting when the legs otherwise at rest. That symptom went away a few months after going gluten free.

    Fast forward a couple of years. I was back on the road traveling and I got glutened a couple weeks in a row, and the leg symptom returned. (It must have been miserable to be the person in the airline seat in front of my flying from Kansas City to DC — I kept kicking his seat, and could not stop). I got glutened a couple more times the next month, and the leg symptoms stayed for a few months after that. Finally I went to see a celiac rock star doc, who told me that the most likely cause was hidden gluten in my diet stripping myelin off of the nerves, causing a short circuit. (The legs only jumped when at rest because no signal was going down the circuit t the time — if a signal was, it was powerful enough to make the legs obey it instead of the spurious signal.)

    He said that if he was right, it should take myelin about 6-8 months to regrow after I find and eliminate the gluten, and after the regrowth the movement in the legs should stop. In the meantime, I should see a neurologist.

    I found the hidden gluten — Hershey’s miniatures I bought during one of my trips and was still eating a couple at a time (contained a tiny amount of barley) — and eliminated it. I went to a neurologist that found white spots on the brain MRI but thought nothing of it. The spine MRI showed no nerve damage.

    After six months passed and the legs still jumping I thought maybe the rock star was wrong. But then, eight months after finding and eliminating the hidden gluten, the legs stopped jumping. And the only times they jumped since is when I’ve been glutened.

    Yes, I do believe gluten damages the brain.

    Reply
  3. 3

    Dick L.

    I have had several neurological symptoms clear up since going gluten free 13 months ago. One of the first was the near disappearance of leg cramps at night, which I attribute to food taking longer to pass through my digestive tract, allowing more absorption of potassium etc. Another was balance problems, which have mostly cleared up, albeit very slowly. I don’t know if elimination of a chronic cough was neurological or not. I’ve had a few occasionally itchy spots on my legs, and they don’t get itchy nearly as often anymore; I think they’re neurological in origin, but I haven’t been able to get a diagnosis from either my regular doctor or a dermatologist.

    But I doubt that those, except the balance problems, were in my head. But who knows? I’m just happy for the improvement.

    Reply
  4. 4

    Alessandra

    I had gluten ataxia and severe non-epileptic seizures several times a day before my diagnosis which completely disappeared after I went gluten-free. Luckily, my doctors appreciated that gluten must have been the instigator and were able to use that information to help a few other patients suffering with unexplained neurological symptoms! I, too, am just so happy that it’s being debated and being seen as a real issue – yay for awareness!

    Reply
  5. 5

    Sheena

    I have Celiac. If I get glutened, in addition to severe GI symptoms (its like food poisoning for me), I have anxiety symptoms that are off the charts, they go away once the GI symptoms subside.

    I tried to explain this to doctors but I don’t think they see the distinction that I see, which is that the anxiety is caused by the ingestion of gluten, not due to me being upset because I feel physically unwell.

    Reply
    1. 5.1

      Jennifer

      I agree! I tried to explain that to a doctor as well. The gluten was fueling my anxiety! I did not have anxiety about gluten. I just got that “look” from him like I was a “stressed out crazy person.” I never went back to that doctor.

      Reply
  6. 6

    el Hefe

    How bout let’s stop worshiping doctors? Ape technicians

    Reply
    1. 6.1

      K2

      I refer to them as body mechanics.

      Reply
  7. 7

    CD

    Beyond a shadow of a doubt………..yes. I suffered from severe depression and anxiety for 20+ years before I got my Celiac diagnosis. After I went gluten free the depression was 100% gone. I was given every psychiatric drug under the sun for depression and anxiety for 20 years. Now, I take nothing! I was told by doctors that I would never be able to “live” without medications. I can attest truly that my life is finally a life worth living because I no longer suffer from depression associated with gluten. No one can tell me that gluten does not affect the brain. It most certainly does.

    Reply
  8. 8

    Shannon

    I had a strange t”tumor” on the brain. I say strange because it didn’t really fall into normal parameters and my doctors were stumped. I ended up having two rounds of chemo and it shrank. Was it the chemo or the fact that during that time the only things I could keep down were ginger tea and bananas.
    When glutened now I ended up with migraines and my mood swings rival Dr. Jekyll and Mr. Hyde.

    Maybe it is all in my head. :)
    This research is great!

    Reply
  9. 9

    A grateful mom

    I was told by one doctor that my 1 year old son was autistic. He had been tested for CF and numerous other diseases but all were negative and still he failed to thrive. He went from a happy intreactive baby to a child who wouldn’t make eye contact, terrible skin infections, and stopped crying and vocalizing. I switched doctors and after taking a full history he suggested I remove food from his diet and return to exclusive breastfeeding. He began to recover almost immediately. As we reintroduced food he began to get sick again. The doctor suggestate a gluten free diet and he began thrive. His skin cleared up, his hearing restored and he began to gain weight. This was almost thirty years ago before most had hears of celiac. Had I listened to the first doctor and treated him for autism he would not have recovered. Today he is an awesome Jr high mathematics teacher.

    Reply
  10. 10

    Wendy T

    My symptoms involve deep depression (on top of the “normal” severe GI issues). As a teen, I was told it was bad PMS by friends and the school nurse. I was told just to cheer up. That’s what gluten does directly to my brain.
    The Celiac did other things. Before diagnosis, I lost concentration, memory, had zero energy, brain fog, etc. My labs indicated that I was deficient in EVERY vitamin and mineral they tested for (and that was a lot). The B12 deficiency I had was significant enough to display dementia symptoms by the time I was 30. It was estimated that if I had continued with those levels, I would have been institutionalized by the time I was 40.
    The damage done by long-term vitamin deficiencies are as reversed as they are going to get, but some of it is permanent. I have neurological pain, random tics, memory issues that never corrected themselves with proper nutrition.
    I do wonder how many people in care facilities have vitamin deficiencies causing neurological issues.

    Reply
  11. 11

    Alysa (@InspiredRD)

    My first symptoms of being “glutened” is an intense tingling in my brain, followed by confusion and an inability to speak coherently. So to any of the doctors who don’t think gluten affects the brain, I present myself as exhibit #1.

    Reply
  12. 12

    Sarah

    I had peripheral neuropathy before going gluten free. Completely with “foot drop” – a general term for difficulty lifting the front part of the foot. I’d trip over my toes regularly…

    Brain fog was a later symptom… But did clear up as well gluten free!

    THERE MAY BE HOPE!

    Reply
  13. 13

    Kathy C.

    I had terrible brain fog, I slurred my words, and felt like a complete idiot when I talked. I had nightly nightmares. It became so terribly frightening that I was sure I had dementia at 49 and would have to sell my business and quit work. I had tongue sores and the muscles in my throat wouldn’t work right for swallowing. 3 weeks off of gluten and the brain fog, the nightmares and tongue got completely better…Praise the Lord! The swallowing about 6 months to get better.

    Reply
    1. 13.1

      Dick L.

      Hmmm. Difficulty swallowing. It hadn’t occurred to me that it could have been the celiac disease, but before I went GF 13 months ago, I was having some difficulty swallowing. About three or four times a week I’d swallow wrong (usually something liquid), and spend the next five minutes coughing. Very annoying and somewhat embarrassing. I thought it was just a problem of advancing age (I’m in my 70’s). But the problem has almost cleared up now, so it could have been the CD.

      Reply
      1. 13.1.1

        Kathy

        I had the same issue. Definitely CD related. Plus, it can also mimic Sjogrens, causing a dry mouth, and that will also affect swallowing.
        Amazing, isn’t it?

        Reply
  14. 14

    Terrie

    Gluten not only affects me physically but just a little bit makes me flip between being angry and weepy. I hate that feeling.

    Reply
  15. 15

    Joanna

    absolutely – look no further for a good example LOL.

    Wreaked havoc on my life – totally destroyed it actually, and the bad decisions, etc., that went along with the other stuff, well, nightmare.

    BUT – this is changing and slowly I am rebuilding. Still have my moments, but this is no longer a way of life forr me – big difference.

    so yes yes yes a thousand times yes there is a strong connection…..

    Reply
  16. 16

    Gloria @ glutenfreepoodlehome

    Before my diagnosis my memory had gotten so bad that I could not remember which color was my toothbrush so I started keeping it in the bedroom, but then forgot where it was. After diagnosis I obtained two science degrees.

    Reply
    1. 16.1

      Gloria @ glutenfreepoodlehome

      There were a few steps and years between those two LOL.

      Reply
  17. 17

    Deb

    I think there is a connection to Alzheimer’s and to Parkinson’s. When I was diagnosed, I was losing my memory fast. I also had severe cramping of my entire body that people thought was seizures but I could still talk. Granted, it was through my tightly clamped jaws, so I was hard to understand, but I could manage to tell people I was aware of what was happening. I couldn’t add or subtract or remember my phone number or address, even right after someone told me what they were. I couldn’t remember words. Someone had to go to the doctor with me to talk for me. I would try to talk but would forget words. Like, instead of “I walked down the road” I would say “I walked dow … dow … dow …” and someone had to guess what word I was trying to say until they got it. When my Uncle got Parkinson’s, I tried to convince him it was the gluten. He had short stature (his relatives weren’t short) gum disease and tooth decay (even though he cared for his teeth and went to a dentist yearly) and often had bloating after a meal. Of course, I didn’t know what I was talking about. His doctors knew what was wrong. When I heard MJ Fox had Parkinson’s I tried to figure out how to contact him to tell him about Celiac. Wasn’t successful. I think a lot of sick people are suffering from gluten issues, but I don’t think the medical community wants to believe that a food could actually be the cause of many diseases. Celiac, in my opinion, is absolutely in our heads … and our endocrine systems, our muscles, our nerves, etc., etc. I was really glad to read the Times article. More mainstream media needs to start running similar reports. People need to know all this disease can do.

    Reply
  18. 18

    Christine

    Can gluten affect the brain?! Holy shiznit, can it ever. I’m usually a quick thinker, but when I’ve ingested gliadin, I develop a major brain fog. I also have trouble staying awake. And don’t get me started on wheat-based foods and the blistering rashes. I go there EVERY SINGLE TIME I TOUCH Wheat. So to those who say that Celiac Disease is “all in my head”, I say, GET STUFFED!!!

    Reply
  19. 19

    Kathy

    All the stories sound so familiar.
    Anxiety, food intollerances and rashes in my childhood and teens.
    Add on vision/balance and GI problems in college years.
    In my 20s I was told I “most likely” had MS. I had classic symptoms, white matter brain lesions, but all the other tests did not measure up, and the lesions were in the “wrong” spots.
    Over the next 20 years I was poked, prodden, stuck, x-rayed, tested. Told I had MS, peripheral neuropathy, myasthenia gravis, migraines, IBS, demyalinating disease, and who knows what else. Yes you have it, no you don’t. And an encounter with a neurologist who told me to stop wasting his time and come back when I had “real symptoms”.
    The ataxia was debilitating at times. I fell several times. No one knew why. Until a wonderful dermatological nurse saw my rash and said “That’s not eczema.”
    The ataxia comes back when I get glutened. I still have a problem with word retrieval, amd I get exhausted when I have to carry on long conversations. That really hasn’t gotten better in the 5 years since my dx. Maybe it still will. But at least I know why.

    Reply
  20. 20

    Linsylu

    I definitely agree with the idea that gluten and Celiac disease messes with one’s head. Neurological symptoms, plus anemia, and some nausea, were how I presented before I got diagnosed. Also, my pre-teen daughter seemed depressed to the point of me considering counselling or other interventions. Six months post-diagnosis, she is happier than I have EVER seen her. She was a challenging child to raise, and while still rather emotional (she’s pre-teen after all!) I have enjoyed getting to know this “new” daughter of mine! :)

    Reply
  21. 21

    Connie

    “- In 2011, Johns Hopkins University scientists found that nearly one-quarter of serum samples from some 1,400 schizophrenia patients had anti-gliadin antibodies, compared with just 3 percent of healthy controls. Of the subset with those antibodies, one-fifth also had those antibodies to transglutaminase 6 linked with neurological dysfunction, compared with 6 percent of healthy controls.

    Dude note: Anybody have an English translation for this?”

    Serum is blood plasma without the red and white blood cells. You basically remove all the red and white blood cells and see what’s left. In this case, there were anti-gliadin antibodies (the famous IgA, IgG, IgE) that typically mark someone to get a colonoscopy to look for villi damage typical in celiac disease. I use the word marker in layman’s terms to describe it, because they show the evidence that the body is reacting to gluten somehow, not a definite diagnosis of celiac disease.

    So basically the report says of 1,400 schizophrenia patients, 97% had markers for potential celiac disease, and 20% of the 97% also had markers for neurological issues, which is much, much more than expected (expected was the 6%).

    Which would then mean that there could potentially be a link between reactions to gluten and neurological disorders (as we would say: duh!) but more studies are needed.

    Reply
    1. 21.1

      Gloria @ glutenfreepoodlehome

      25% have the markers, not 97%, so about 350 of the 1400. Celiac patients also need an EGD of their small intestine, and not a colonoscopy.

      Reply
      1. 21.1.1

        Connie

        thank you! I wrote that before I had my coffee and missed the right statistic :-)

        Reply
  22. 22

    Amy Raslevich

    I’m not a scientist, but I analyze a lot of scientific articles as part of my work. So here’s my shorthand stab:
    ——————————————————————————————-
    – In 2011, Johns Hopkins University scientists found that nearly one-quarter of serum samples from some 1,400 schizophrenia patients had anti-gliadin antibodies, compared with just 3 percent of healthy controls. Of the subset with those antibodies, one-fifth also had those antibodies to transglutaminase 6 linked with neurological dysfunction, compared with 6 percent of healthy controls.

    Dude note: Anybody have an English translation for this?
    —————————————————————————————-
    Of 1400 people with schizophrenia, almost 350 showed abnormal levels of IgA, IgG or IgE antibodies — the ones they look for with celiac disease. In a healthy population (assuming one of the same size), only about 42 people showed these antibodies.

    Of the 350 people in the schizophrenic group, 70 specifically showed an abnormal level of TGM6 (which is already specifically linked to neurological problems). Of the 42 people in the healthy group, only 2 had this antibody.

    This means that even though they have not yet verified a connection and cannot say if it is a cause or effect, schizophrenics in this study were much more likely to have antibodies in their blood related to celiac disease, and specifically those linked to neurological symptoms. The differences were big enough to be ‘statistically significant’ (outside of random chance). So they don’t know why, but they do know something is different, and that is a start.

    Reply
  23. 23

    Musicmidget

    Dude, how can you say that it’s all in our heads? You of all people should understand! I can’t believe you would even write something like this! After all the assurances that you are really on our side…..wait, what? Oh….sorry, didn’t read past the title. Please continue.

    Reply
    1. 23.1

      Musicmidget

      Ok, technical glitch caused the rest of my comment not to post…..and ruined my joke. Boo!

      Reply
      1. 23.1.1
      2. 23.1.2

        Musicmidget

        And it happened again. It only seems to take the first paragraph. Help!

        Reply
        1. 23.1.2.1

          John

          Just a thought: perhaps your comment is sending after you press when you only mean to start a new paragraph with this action? If this is the case then try for a new paragraph and reserve only for sending. This happens a lot on facebook.

          Reply
          1. 23.1.2.1.1

            John

            Oops, let me try that again:

            Just a thought: perhaps your comment is sending after you press {Enter} when you only mean to start a new paragraph with this action? If this is the case then try {Shift}{Enter} for a new paragraph and reserve {Enter} only for sending. This happens a lot on facebook.

            (On my first attempt to send this I enclosed the key commands with the less and greater arrows but it ended up suppressing those arrows (and the words within them) on posting! Weird one, oh well.)

            Reply
  24. 24

    Gloria @ glutenfreepoodlehome

    I read a book in 1992 that I still have. “Can a Gluten-Free Diet Help? How?” By Lloyd Rosenvold MD I think he was ahead of his time. He connects MS, dementia, schizophrenia, depression, etc. To quote him from the book, he says, “Many end up being placed on various tranquilizer-type drugs and may be subjected to multiple and extended counseling sessions at a huge expense.” He goes on to say that no amount of counseling will cure real physical distress. 1992!! Did anyone listen to him? He also quotes Dr’s from the 60’s, 70’s, 80’s. (He quotes Dr Dohan from Pennsylvania in 1966 and his observations of celiac and schizophrenia) I wonder if he is still alive and what he thinks of this “recent” news.

    Reply
  25. 25

    Nancy H

    Gliadin and Tissue transglutaminase antibodies are produced by the body when they identify gluten as “foreign” and want to attack it and remove it from the body. The symptoms of celiac are basically the body’s reaction to this war that is going on. Lab tests can identify these antibodies in patient serum, and are a tool for clinicians to use to help diagnose celiac patients. One caveat: if a person has self-diagnosed themselves with a gluten sensitivity and removed it from their diet for any length of time, these antibodies will disappear from the bloodstream, and the tests will appear negative, thus causing doctors to proclaim you perfectly health! Which is what keeps happening to me…..

    Reply
  26. 26

    Jennifer

    For a decade I suffered, as a child, with depression, anxiety, OCD symptoms, ADD, and that brain fog so many of us talk about. When a gluten free diet was new to me, the moment I realized my depression had been absent about as long as I’d been gluten free to the best of my ability (about a month) I knew I would never go back. In college I cried every day – seemingly for no reason. Nearly every time I get “glutenized” a wave of depression comes back, plus all those other symptoms I mentioned I had suffered with. Now, after six years of healing, these waves are MUCH weaker, and I am much more prepared and practiced at handling those emotions and feelings. My best tips: breathing deeeeeeep breaths down through my toes, especially through the gut, and up through my shoulders to the top of my head, using essential oils in a hot bath: eucalyptus, lavender, clary sage, and speaking affirmations, like: “My body is healthy, balanced, and healing,” “I am happy!” and using techniques I’ve learned from laughter yoga to just laugh, at nothing! Hey, I used to cry about nothing – so this silly step is a HUGE 180 in the right direction :0)

    Reply
    1. 26.1

      Groucho

      Same story here, excepts when I feels a surge of depression, I just nap it out. Always worked great, my brain kind of «wash» itself off.

      I also fasts a few hours and drink a lot of water to help the body cleans whatever mess my hazardous gluten intake did. Anyway, I FEEL like it helps, but I cannot be 100% sure.

      Reply
  27. 27

    Elizabeth

    I have celiac. Since going gluten free I have gained about 60 pounds over a 2 year period. I can’t lose weight. What am I doing wrong. I’m gluten free an dairy free. Yes it affects my brain an nervous system. I see a NES practice an she says mine stems from a virus of the brain encephalitis that started generations before me. I need any advice you may have. Thanks

    Reply
    1. 27.1

      Wendy T.

      Elizabeth,

      I haven’t been able to lose weight in decades. There could be any number of reasons why you can’t. Mine seems to be a combination of slow metabolism, forgetting to eat (before I started logging my food regularly I would go all day without eating anything), thyroid problems (not uncommon in Celiacs including Hashimotos which is another autoimmune), etc.
      So far we haven’t found a solution to my weight issue, so I’m just focusing on feeling healthy and accomplishing my goals without worrying about the scale. I’m a lot happier since I gave up on a weight goal number and just keep track of when and how much I eat so I can make sure to have enough in my system to have the energy I need to do the things I want.
      Good luck!

      Reply
      1. 27.1.1

        Groucho

        Before discovering gluten as a *major* irritant, I was terribly thin. I could eat a tremendous amount of food and still never take a kilo. From what I gather, since my sleep was troubled and my anxiety level off the roof, my basic metabolism was most likely burning way more calories than the regular Joe/Jane.

        Now it’s different, IF I was eating as much as before, I’d be enormous, no doubt about it. Otherwise, the classic tricks are to sleep as much as your body wants you too, having some sort of exercise routine and eating WAY more vegetables than indicated by the Health Agencies.

        Reply
  28. 28

    Jennifer

    I am glad this is finally be discussed outside of the celiac circles. I KNOW that gluten affects the brain. I had headaches, brain fog, chronic dizziness, …but the worst was the constant anxiety and reoccurring panic attacks. Before going gluten free, I remember laying in bed trying to convince myself that I wasn’t dying (panic attack) and that I didn’t need to go to the emergency room (I had already been there twice). I felt weak and, quite frankly, crazy most of the time. After going gluten free, within a few weeks my anxiety came way, way down to what I would consider normal and I haven’t had a panic attack since (18 months so far). The daily headaches, constant brain fog, and dizziness have also disappeared. Driving is much easier now that I feel like I can cross bridges without freaking out (yea, I know, that’s a weird one, but it was true for awhile).

    Reply
  29. 29

    el Hefe

    OK, so who has done the studies demonstrating a safe level of gluten for neural health in Celiacs?

    Start writing your grant proposals, geniuses.

    Reply
  30. 30

    Ken

    It actually explains the constant bouts I’ve had with anxiety and brain fog all of my life.
    Interestingly, I know I get glutened now because I’ll have a panic attack. It’s usually at the most inopportune time too.

    Reply
  31. 31

    Gill

    For over 20 years I had suffered dreadful tummy & toilet issues….diagnosed with gallstones (gall bladder removed)! diverticulitis, hiatus hernia, irritable bowel….skin problems…under skin spots & boils….mouth ulcers, and last but certainly not least vertigo & BRAIN FOG, accompanied by depression, irrational behaviour, amongst a whole load of other stuff. 5 years gluten free….5 years free from all the above

    Reply
  32. 32

    Marie

    Hopefully, I am not too late to the party but wanted to add our son’s story here. I just read the NYT article and this post and had never heard of associating reverse autism to CD before.
    Last year, same time our son was scheduled to go to the ‘autism clinic’ since he had many the signs( almost no eye contact, hand flapping, head, etc.) except that they felt non linear to us parents( some days were much worse than others, some days he had no signs at all). Because he was also complaining bra out his tummy aches, knee pain, weakness in legs, I asked his new pediatrician about Celiac( had asked previous one, got him tested, was told our son did not have CD turned out he was not given the Celiac panel). Well long story short:
    After a very strong positive on blood tests results( we were told that in Europe it would have been enough to diagnose with CD) and a confirmation through biopsy, he has been GF for 10 months. No more hitting his head, his eye contact is normal for his age, no more ADD signs, shooting pain in legs and arms, his speech has progressed back to almost normal for age( he just was discharged from special ed in September). None of his therapists who’ve known him for two or three years can believe it is the same child. They had never seen such an abrupt change. People who did not know him before do not realize where he is coming from. Yep, Celiac affects the brain, we believe it.

    Reply
    1. 32.1

      Gluten Dude

      Wow. Seriously…just wow! So great for you and your family that you found the culprit.

      Reply
      1. 32.1.1

        Marie

        We are definitely relieved even though there is still lots of work ahead but knowing what we are actually fighting against makes a big difference. Our son is still delayed in speech and still gets therapy for that but is no longer qualified as special ed. He is learning so much by the day and we are thankful for/ thrilled about that.
        His school has been great and let me give a little presentation to faculty and staff about Celiac disease( I used some of the info from your site) and he now has a 504 in place for it. I tried to emphasize the neurological presentation of the disease, as it what we are dealing with most, and wished I had a solid article about ‘reverse autism’ at the time.
        The neurological side of Celiac disease is very much still misunderstood. His current pediatrician( the one who finally gave him the correct blood test) thought it was ‘only a gut issue’ and before the tests also said it was highly unlikely our son has Celiac because he is above the growth charts. The pediatrician has since been educating himself more about it, which is good. Talking with his GI has also been a relief as he is also in the research side of things and is up to date on the subject.
        Talking with other people with Celiac disease also helps us understand/ help our son better. My husband’s aunts, both diagnosed, have taught us a lot about commonly ignored( by the ones not dealing with it) symptoms: brain fog, depression, anxiety.
        Anyway, LOTS to say. We are very happy/ thankful for websites like yours.

        Reply
  33. 33

    Theresa

    Interesting, one of the (many) symptoms that had me worrying something was happening was the brain fog and starting to get forgetful. I was 49 at the time and beginning to worry that I might be getting Alzheimers….I would be in the middle of a conversation and completely lose words, so mid sentence I couldn’t think of the word I needed for something – and I’m not talking about obscure words, for example if I was trying to say “Did you see the movie Castaway with Tom Hanks” it would come out “Did you see the movie uh..what was it called…oh yeah… Castaway with …uh…..[insert embarrassing silence here] what’s that guy…. uh……..”

    And I had the mood swings too, I could go from content to depressed within 20 minutes….and I had constant anxiety…..and don’t get me started in the irritability – although I confess I still have that – which could be hormonal at this point…. :-p

    Reply
    1. 33.1

      Wendy T.

      My grandmother had dementia at the end of her life. Some of my family say it was Alzheimers. I don’t know. What I do know is that she had a SEVERE B12 deficiency and that can cause dementia. I had just been diagnosed with CD and my aunt in charge of my grandmother’s care refused to get her tested. With my pre-dx memory loss and vitamin deficiency issues (all directly caused by the CD), I am sure that the deficiencies were causing the dementia… why they never looked for the cause of those deficiencies, I don’t quite understand.

      Reply
  34. 34

    Michael

    This is my first time commenting on your site Dude. I have celiac and gluten ataxia, as well as several other autoimmune diseases including MS. I suffered brain damage after each of three significant accidental ingestions of hidden gluten after going gluten-free in late 2007. The last was after 7 months with no mistakes. It wiped out much of my memory, rendered me unable to speak for quite a time, and I had to essentially relearn to spell everything, as well as to relearn smells. A neurologist said I had 44% traumatic brain injury. It is great to read so many stories of recovery. I am commenting because there seems to be a need for greater understanding.

    Dr. Rodney Ford, Gastroenterologist in New Zealand, who has written more books on gluten than anyone, says that celiac disease is primarily a neurological disease. Let me state that more precisely. Gluten is more likely to affect your brain than any other part of you. That goes for everyone, not just those with celiac disease. Neurologist Dr. Marios Hadjivassiliou said Dr. Tom O’Bryan’s Gluten Summit that the vast majority of celiacs have symptoms of ataxia. HLA-DQ5 and DQ6 are gluten ataxia genes as well as DQ2 and DQ8. Most Caucasian Americans have a gluten ataxia gene. I have DQ2.5 (DQA 05 01 and DQB 02 01) which over 90% of celiacs have, and is the second most common haplotype among Caucasian Americans, and also puts you at risk for MS. That also means that I have DR3, and DR3 DQ2.5 puts you at risk for more autoimmune diseases than any other DR DQ haplotype. My other DQB gene is DQ 0602, which is a gluten ataxia gene, as well as an MS gene. This gene is part of the most common HLA haplotype among Caucasian Americans.

    Immunologist Dr. Aristo Vojdani says that it only takes a sequence of three identical amino acids for molecular mimicry. If you have high antibodies to gliadin, those antibodies can attach to cerebellar tissue, which is what causes gluten ataxia. Dr. Hadjivassiliou said that most end up in a wheelchair before they are diagnosed, and those with ataxia have to be extra careful to avoid any contamination. What does that mean? For me that means that if I am in a grocery store with a bakery, or am downwind of a restaurant, and am smelling strongly something with gluten, like bread, pizza or fried chicken, inhaling more than 2 lungful of that air will have me experiencing ataxia the next day, dropping and breaking stuff in the kitchen, falling over, and having trouble speaking and typing. Every incident takes me longer to recover, and that is up to 4 months now.

    Dr. Tom O’Bryan recently revealed that he has non-celiac gluten sensitivity and that he had high antibodies to cerebellar tissue (cause of ataxia), myelin basic protein (cause of multiple sclerosis), and gangliosides (this relates to general neuron destruction). He also said that he tested 31 consecutive patients who walked through his door and found that 8 (26%) had high cerebellar antibodies. He said “This is scary huge.”

    I hope I have shed some light on how gluten affects our brains.

    Reply
    1. 34.1

      Samuel Pé

      Thanks Michael, great info.

      Reply

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