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Neurological Symptoms

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RejoicingL
RejoicingL Posts: 95 Member
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I am gluten intolerant, but after going completely off it for 6 weeks, I started feeling better, so I started slowly adding gluten back in. (dr says to go as I feel) I do OK (digestively speaking) unless I have an abundance of gluten. I cannot tollerate any whole wheat products or too much in one day.

But I am starting to wonder if the gluten is still affecting me in other ways, such as neurologically. I feel like I am loosing my mind some days!

Can anyone share their own personal experience with the neurological symptoms?
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  • bebe729
    bebe729 Posts: 20 Member
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    Before I went gluten free, one of the multitude of issues that I had was foggy brain, which definitely gave me the sense that I was losing my mind. I dealt with that for many years and always complained to my doctor about it. He didn't really have any good resolution. But once I went off of gluten, the fog cleared for the first time in many, many years and it has not returned. I have been "glutinated" accidentally several times but these were all single incidents and didn't impact my thinking although it did give me a headache. I have found that I have to be 100% off of gluten. Even a little bit causes nasty digestive issues for me. For a truly gluten intolerant person, even a little bit can be damaging. Certainly, having a little bit, particularly with any regularity, can impact you neurologically.
  • pdworkman
    pdworkman Posts: 1,342 Member
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    Absolutely. It can make you foggy, sleepy, anxious, depressed, confused, etc. It can make it difficult to speak. It can cause sensory symptoms, peripheral neuropathy, and even gluten ataxia. It can cause tremors and muscle spasms. I can cause migraines. My grandmother's atypical Parkinson's disease was probably celiac.

    Celiac nurse has a number of posts on possible connections between celiac and ALS.

    And of course, the malabsorption caused by celiac disease can also cause B12 deficiency, which causes permanent, irreversible nervous system damage.

    Here's another good article:

    http://www.celiaccentral.org/mental-health/

    My family tends to have more neurological symptoms with celiac than digestive.

    Please don't add back in gluten to see how much you can tolerate. You know that it is bothering you, and you could be doing irreparable harm. Even if you have had negative blood test and/or biopsy, you could still have celiac disease, and it really isn't worth your health and sanity to have "just a little" gluten.
  • Flab2fitfi
    Flab2fitfi Posts: 1,349 Member
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    Before I went gluten free, one of the multitude of issues that I had was foggy brain, which definitely gave me the sense that I was losing my mind. I dealt with that for many years and always complained to my doctor about it. He didn't really have any good resolution. But once I went off of gluten, the fog cleared for the first time in many, many years and it has not returned. I have been "glutinated" accidentally several times but these were all single incidents and didn't impact my thinking although it did give me a headache. I have found that I have to be 100% off of gluten. Even a little bit causes nasty digestive issues for me. For a truly gluten intolerant person, even a little bit can be damaging. Certainly, having a little bit, particularly with any regularity, can impact you neurologically.

    Ditto - I can remember that brain fog and also the depression. I don't about others but I also found myself being very clumsy.
  • lesliev523
    lesliev523 Posts: 368 Member
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    I had brain fog, loss of memory, insomnia.... then it went on to dizziness, loss of balance (typical gluten ataxia symptoms)....finally progressing to neuropathy and violent hand tremors! It was very scary!

    I have no desire to let gluten back into my life!
  • hungrybunni
    hungrybunni Posts: 66 Member
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    I never realised these kind of symptoms could be down to gluten! I've been putting them down to my diagnosis of labyrinthitis. foggy mind, depression etc etc. I've been gluten free to support my daughter but have found my IBS is so much better. I've had the odd bit of gluten, e.g. rolls, pringles and odd bit of bread and was feeling rough again.........I'm defo gonna stay gluten free now!!!
  • khaosstar
    khaosstar Posts: 26 Member
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    Everyone reacts differently, but I personally get extremely irritable the day after eating gluten. Migraines, fogginess, and anxiety/depression can last a few days afterward.

    The irritability, though.. it's not as widely discussed but it's horrible for me. I become a real shebeast in the morning and have to meditate and actively keep myself calm throughout the day.

    I'm only intolerant but will nevertheless go back to gluten. It's not worth it at all. I've only been gluten free for a little over a month, though, and never heard it could cause tremors. Learn something new every day! My hands shake so badly and constantly that I couldn't take a clear picture to save my life. Here's to hoping that one clears up soon!
  • Bola17
    Bola17 Posts: 120 Member
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    I really think your Dr. is giving you bad advice. I was told by gastro specialists that even eating small amounts of gluten can silently harm my intestines causing malnutrition, osteporosis, high cancer risk,and neurological dammage. Just to name a few. Of course I have celiac disease but have only been diagnosed 7 years ago. Before that I had many of the symptom you all describe.
  • janessafantasma
    janessafantasma Posts: 312 Member
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    I have suffered from migraines and painful inflammation all over my body. Doctors thought I had celiacs, given all my symptoms. My test was negative, but I've been advised to go gluten free and keep track of all of my symptoms and if there is a reduction in them. I never realized that my inflammation, pain, migraines, exhaustion, etc could all be side effects of a gluten intolerance.

    I'm so excited to get home (recovering from oral surgery) and start my gluten free life!
  • JanLeb
    JanLeb Posts: 316 Member
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    I am also gluten intolerant and every now and then I 'slip' thinking I am feeling fine so for some reason I feel like I need to "test" it.
    Always turns out to be a bad idea. Depending on what I have the symptoms may very. If I eat bread, cakes or pasties my stomach does not take long to let me know it is not happy with me.

    I also find with small amounts I get migraines, brain fog, concentration problems, body aches, trouble sleeping, anxiety and mood swings just to name the ones that come to mind right now.

    I try very hard not to touch gluten anymore, it just isn't worth it. But there are times that I slip, or do not realize I have had it and I always regret it.
  • dovek11
    dovek11 Posts: 94 Member
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    I am another who lived in a brain fog that many times bordered on thinking I was mentally ill. I couldn't stand myself, so I am sure family couldn't! I am a happy bubbly person now that I am GF. Its been like Dr Jekyll/ Mr Hyde.
    I also suffered a great deal of inflammation in my body, some of which took months to go away.

    I agree to cut it out of your life altogether. Life is NOT over without gluten, or even all grain. I promise!

    May I add another note, I have found I am also intolerant to any form of corn and soy. It too will cause headaches, pressure and grumpiness in me. So you may need to check further than the gluten, to finally feel better.

    May your quest be successful!
  • Debbiedebbiey
    Debbiedebbiey Posts: 824 Member
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    Bump for my mom to read
  • Jesstruhan
    Jesstruhan Posts: 331 Member
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    Before I went gluten free, one of the multitude of issues that I had was foggy brain, which definitely gave me the sense that I was losing my mind. I dealt with that for many years and always complained to my doctor about it. He didn't really have any good resolution. But once I went off of gluten, the fog cleared for the first time in many, many years and it has not returned. I have been "glutinated" accidentally several times but these were all single incidents and didn't impact my thinking although it did give me a headache. I have found that I have to be 100% off of gluten. Even a little bit causes nasty digestive issues for me. For a truly gluten intolerant person, even a little bit can be damaging. Certainly, having a little bit, particularly with any regularity, can impact you neurologically.

    Ditto - I can remember that brain fog and also the depression. I don't about others but I also found myself being very clumsy.

    Me Three!! Tired, groggy, can't think...My friends would joke with me that I would cross words together all the time that had similar meanings - and that has largely stopped. My super foggy-brain and ever-present down-feelings are largely gone now, too. Just more reasons to stay away from the "evil glutens". I can tolerate some small amounts of wheat, but even the little bit must do something to me if having more makes my stomach gurgle and my mind to stop working as it should.
  • Jesstruhan
    Jesstruhan Posts: 331 Member
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    I am also gluten intolerant and every now and then I 'slip' thinking I am feeling fine so for some reason I feel like I need to "test" it.
    Always turns out to be a bad idea. Depending on what I have the symptoms may very. If I eat bread, cakes or pasties my stomach does not take long to let me know it is not happy with me.

    ^ This! Panko breading. I miss calamari so much, but the panko FLOORS me for an entire night. No more little "tests" for me.
  • monicalosesweight
    monicalosesweight Posts: 1,173 Member
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    I have what they call a true wheat allergy (which means it's not an absorption issue so much as my body completely rejects wheat and fights it). I get headaches and massive skin rashes if I eat too much. I've even noticed cold symptoms and sinus pain and a bit of brain fog sometimes. I'm doing my best to stay away from wheat and gluten and it's tough.
  • possibri
    possibri Posts: 158 Member
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    I am also gluten intolerant and every now and then I 'slip' thinking I am feeling fine so for some reason I feel like I need to "test" it.
    Always turns out to be a bad idea. Depending on what I have the symptoms may very. If I eat bread, cakes or pasties my stomach does not take long to let me know it is not happy with me.

    ^ This! Panko breading. I miss calamari so much, but the panko FLOORS me for an entire night. No more little "tests" for me.

    FYI, I was looking for a gf panko substitute... apparently Kinnikinnick has a gf Panko-style bread crumb product, and I've read good things about it. I've been making gf chicken nuggets with quinoa flour, but they don't have quite the texture I want, so I'm hoping these crumbs are the solution! I'll try to remember to report back whether or not they tasted good, stayed crispy, etc.
  • idauria
    idauria Posts: 1,037 Member
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    My sister is gluten/wheat intolerant and she only has the neurological symptoms. Brain fog is definitely one of them. Plus she gets weird eye tics and anxiety. This all goes away when she eliminates gluten completely.
  • kelbelzz
    kelbelzz Posts: 92 Member
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    Everyone reacts differently, but I personally get extremely irritable the day after eating gluten. Migraines, fogginess, and anxiety/depression can last a few days afterward.

    The irritability, though.. it's not as widely discussed but it's horrible for me. I become a real shebeast in the morning and have to meditate and actively keep myself calm throughout the day.

    I'm only intolerant but will nevertheless go back to gluten. It's not worth it at all. I've only been gluten free for a little over a month, though, and never heard it could cause tremors. Learn something new every day! My hands shake so badly and constantly that I couldn't take a clear picture to save my life. Here's to hoping that one clears up soon!

    I definitely hear that! I get extremely irritable after eating gluten. Not just the next day though, it'll last for a week or more.

    I didn't know I was gluten-intolerant, and had been eating it for twenty-one years.. Which explains why I was so impossible to deal with. Even two days after not eating gluten, I feel noticably happier, less confused/foggy. I get fewer migraines, and feel less depressed/anxious.

    I can't imagine wanting to introduce gluten back into my life, I'm fine without it!
  • Maintain4Life
    Maintain4Life Posts: 11
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    When I get accidentally glutened, my first symptom is nightmares that night. It's really horrible. If it's a lot of gluten, I can have panic attacks for days. If it's just a bit of gluten, my anxiety disorder reappears and I'm at a constant 8/10 on an anxiety scale for about 3 days -- in addition to the GI symptoms. It's horrible. I have a fear of eating gluten now.
  • Mezzie1024
    Mezzie1024 Posts: 380 Member
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    When I get glutened, the neurological symptoms are worse than the digestive ones (though those aren't fun, either). I get brain fog, anxiety, extra-bad insomnia, irritable, and depressed, and it lasts for days. :ohwell:
  • staceybrewer
    staceybrewer Posts: 36 Member
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    Gluten becomes a neurotoxin when we don't digest it properly. If you are sensitive to it, you probably should not go back and add it in. I would consider that bad advice.

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