Is Gluten Killing My Brain Cells?

[cornbread]

Every time I'm glutened (or caseined in my case too), for the following week I get brain fog and neurological symptoms (sometimes even see bugs, flashing lights, etc. ), am very light and sound sensitive, am uncomfortable making eye contact, making conversations is a big struggle and when I do try to, words often come out wrong as if I'm drunk or verbally dyslexic.

This normally resolves when the glutening has worn off, but the last couple of times, I have noticed this lasting longer than other symptoms. I got caseined last Monday, felt sick until this Monday but have felt great since yesterday *except* I have been finding it difficult to think of the right word sometimes. I know that happens to us all every now and then, but for me not like this. The word I was looking for was "occur", ie: "it doesn't even occur to them" and I swear I could not think of that word! I knew what I wanted to say but I could not find the word. It was really scary. I was not tired and feeling great in every other way.

So here's my question - anyone else get this long-term, and am I being paranoid by thinking that every time I get glutened it is killing off some brain cells??!

[Guest CD_Surviver]

well i am doing my research paper for biology in school on the effects of gluten on the brain in some one who has celiac disease or gluten sensitivity or gluten intolerence. if you would like i can keep you up to date on what i am finding and there is a topic that i have posted called research question that i will be leaving messages when i find something useful to all that have brain fog and other thing accosiated.

Lauren

[Rachel--24]

Well I dont know the answer to your question but I know exactly what you are describing. When I was very sick (still eating gluten) I was the same way. I was extremely light sensitive (didnt see bugs though), I found it extremely hard to find words and avoided conversations and also avoided eye contact for some reason. This was SO unlike me because I normally have no problem findiNg words and most people would say I talk TOO much.

Anyways I was in that constant state of being for almost 3 years...it was scary.

I also would occasionally slur my words and sometimes it felt as if I didnt have control of my tongue or something. The last few months I think I've been getting small doses of gluten at least once a week and I notice some of these problems coming back only not nearly as severe as they used to be.

I dont have classic symptoms although I do lose weight when glutened and have very mild stomach discomforts. The other issues seem much more serious and uncomfortable to me. I have DQ1 and no celiac gene. There are some different complications that occur with this gene...mainly neurological. Were you ever gene tested?

[cornbread]

Lauren - Thank you. I saw that post and replied to it re: brain fog, as that is my most severe symptom. I had it almost every day for 13 years before diagnosis. Seems astonishing now, but when you always feel like that you just think that's normal. I'm looking forward to reading your findings. The neurological aspect of gluten is fascinating to me.

Rachel - Yes, I was gene tested. I have one DQ2 (celiac) and one DQ3 (gluten sensitive) gene. Dad has double DQ2's, Mum has double DQ3's, so I didn't really stand a chance!

Like you, my symptoms are mainly neurological.

I'm glad to hear I'm not the only one who has the eye contact / conversation problems when glutened. It's one of the symptoms (along with irritability) that it seems hard for my family and friends to believe is really all because of gluten. They see the change in me but I think they find it impossible to comprehend how all that can come from licking a stamp.

[nettiebeads]

I get the brain fog, but not as severe as yours, but I was giving myself a low level glutening every day by eating cold cereal with malt. I started to get numbness in my extremeties and a constant low level brain fog. My theory is that the celiac disease causes malabsorption and so the body doesn't get what it needs to keep your nerve cells healthy and firing properly. And your brain (and everything else) functions by nerve synapses. So if they don't fire properly, it's like putting really cheap gasoline in a high powered engine - it goes but not too well. (Sort of showing my age here- who remembers regular and premium gasoline and gas price wars when gas was $.27/gal?)

[jenvan]

cornbread... i'm no scientist... but i wouln't worry about your brain cells being killed. it is valid to be concerned about glutening for other reasons though. i also know what you are describing. i was amazed at the effects of being glutened post gluten-free, and the beginning months of being gluten-free. i became very forgetful and quite a few times got a verbal version of dyslexia... words in my sentences were literally switched around and i kept having trouble finding words. in my opinion, those are more symptoms than neurological damage...however i do believe that neurological damage can be done. there are quite a few here who have had neurological damage. if these issues keep persisting i would be more concerned, but if they come and go with the mistakes in your diet, i wouldn't be as concerned. however...i will say i don't know about seeing flashing lights... that could be something else. you might want to ask a doc about that one!

[Nantzie]

Actually you can get neurological damage, not just symptoms, from gluten. It's more rare, but there is even such a thing as gluten ataxia -

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PLEASE, please, please read this thread too, started by one of our members who has gluten ataxia. -

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I think that with celiac, even just your basic, mainly digestive symptoms celiac, you're going to have neurological symptoms like brain fog, etc. But there is a neurological type of gluten-caused disease out there that we need to be informed about as well. I'm guessing that the cerebellar damage is pretty rare, even in people with mainly neuro symptoms, so I wouldn't get too worried, but I would go see a neurologist for an evaluation.

From what I have seen written here by people with gluten sensitive genes is that they seem to have more neurological problems than people with celiac. So maybe gluten sensitive, even though it sounds like it's no big deal, is more a sign of the neuro complications being of greater concern.

For me, the neuro problems are what are seeming to get worse, so I'm a lot more worried about that stuff than I am the digestive. I have a cousin who has MS, and I've read that gluten ataxia can be misdiagnosed as MS, so I'm concerned about her as well.

I've had brain fog, bad memory, difficulty finding words, for a long time. Always figured I had adult ADD because my dad had it and I was always so much like him when it came to that stuff. I've also had balance problems since having mono, which was probably my trigger. Now, I'm starting to have some problems with speech, like my tongue seems too big or less controllable, ESPECIALLY after I've had gluten.

The other day, without thinking about it or meaning to because I'm still eating gluten for testing, I ate gluten-free for most of the day. Then in the late afternoon/evening, I had gluten, and all my neuro symptoms came right up. I didn't even realize I hadn't had them all day until after I had the gluten. Scary.

Nancy