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Twizzel

How Long Til gluten-free Diet Shows Cognitive Improvements?

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I haven't been officially diagnosed with gluten intolerance or senitivity, but I have a huge list of symptoms that fit. These are symptoms I've had my whole life or nearly my whole life. Even though I tested negative with celiac blood test, my doctor told me to try the diet for 3 months because I didn't want a biopsy.

My question is this. I have been seeing immediate gastro relief (an amazingly asthma relief), but I want to know how long until I should see mental improvements? I feel like a crazy person and I am so sick of everything feeling far away and dark (for like 20+ years now). My memory is so awful and its really upsetting me these past few months.

I have been on the diet for 1 and a half months, but I messed up the first two weeks. So its more like a little over a month.

Can anyone tell me what their experience says should be the length of time I should start to feel somewhat better mentally?

I know there is a possibilty this is not gluten related, so I want to know how long till I pursue other things.

Thanks in advance.

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I do not know if I have mental symptoms, as mine were so severe GI symptoms, the relief of those gave me a clear head anyway! :) But I have several friends who have Celiac's disease, and they both have severe neurological symptoms. Their doctors said to stay off it for at least 6 months, to even begin to see results. Since you are already seeing significant changes, stick with it. But don't be afraid to get your neurological symptoms checked out if you haven't already. There could be something else at work too. Best of luck!

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I do not know if I have mental symptoms, as mine were so severe GI symptoms, the relief of those gave me a clear head anyway! :) But I have several friends who have Celiac's disease, and they both have severe neurological symptoms. Their doctors said to stay off it for at least 6 months, to even begin to see results. Since you are already seeing significant changes, stick with it. But don't be afraid to get your neurological symptoms checked out if you haven't already. There could be something else at work too. Best of luck!

Thanks for your response, Ciavyn

I have had my mental symptoms checked extensively. So, while I am not denying they could be a part of it...there are just some pretty upsetting symptoms (me feeling this distant from reality, forgetful and tired all the time) that can't be defined by anything me or my doctors have learned from testing, therapist sessions and reaction to medications.

Going the gluten free route for a few months was an alternate route, as I pretty much gave up hope that I would ever get better. I am not on any medications that I have to take everyday. I am still prepared to deal with me feeling like I am in a brain fog until I die. And that is not me being negative, its just I've had this feeling for over 18 years and I can't waste my entire life trying to fix it. All I can really do is focus on the great parts of my life and let myself forget that I have this condition that noone has figured out just yet. I have learned how to function like this as I have felt like this more than half my life. And I honestly do go for months not thinking that there is anthing wrong with me because what I remember was reality is almost gone now. Sometimes though it can get so bad its just puts itself in my face and I can't avoid it. Like everything just gets really fuzzy and dark and I feel so out of it no matter how much I relax. But its probably just my subcioncious locker saying "hey have you learned anything new yet, or should I just make you forget about it for another couple months?".

The point of what I am saying is that I have seen doctors, both physical and mental and nearly exhausted the routes they have had available to them. In the hard parts of my life, I have developed excellant coping skills, but not reallly gotten much for answers. I am so tired of being put on medications that people don't even know truly how they work, when its probably just a simple answer. And explainging that things feel "off" and "dark" and "fuzzy" all the time is really frustrating --Not many people can understand my symptoms, why they are disturbing and believe I am telling the truth.

But yeah, my original question is how long should I wait for results before I would say this isn't related to gluten. I am very optimistic as I have proven that I do have atleast a physical reaction to gluten. I know my intestines would have to heal. What I am understanding is 3-6months for that to start happening to the point where i'd notice it.

Anyones's experience on this would be so helpful. Thank you.

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You describe the neurological symptoms very well.

I had that dark, distant, "I'm not really here" feeling for 7 years. It was awful. I had no idea it could be related to gluten. I was on the anti-depressants and anti-anxiety to no avail. Prior to this setting in, I was very mentally sharp and socially interactive. When I got really sick, it was a complete shock as to what could possibly change my personality so much that I couldn't interact with others or tolerate mental stimulation.

Almost all of it has resolved and I'm 4 months gluten free. I am now certain that it was all gluten related. I am improving more every day. Most days I am fine and I feel "connected" for lack of a better word. But there certainly things that are not 100% yet. I have read that the neurological symptoms take the longest to resolve and sometimes people do not get complete resolution of their neurological symptoms. But the worst of the spacy distant feelings were gone by the third month for me. Everyone is different, but I want you to have hope and know that it can improve.

Vitamin supplements help.

If I ever get gluten accidentally it all comes right back. It only lasts a few days, but it is a big reminder to be ever vigilant about gluten. Hope you see huge improvements the longer you are gluten free.

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Twizzel, you do describe the neurological symptoms very well. I have taken antidepressants, anti-anxiety, and even anti-psychotic meds on and off for years, with little to no improvement. I hate these feelings that I have, that are so difficult to explain, and sometimes you end up losing friends over because you just can't do things that everyone else does because you're stuck in this fog. I've been to such dark places. I, too, have developed some pretty good coping skills for some of the more serious issues I was dealing with, but it's a daily struggle with...myself!

I am only a few weeks gluten-free, so I'm sorry I can't offer any answers as to when these symptoms should clear up. I just wanted to say that I can't wait. It's so crazy to me to think that gluten may have been causing this struggle for so long. It makes sense by way of the GI problems I have, but I never knew that untreated celiac disease could result in neurological problems, too. I'm REALLY REALLY hoping I find some relief (I'm currently on two antidepressants/antianxioylytics and another one at night for insomnia), and that YOU DO, TOO!!!

Just a waiting game, I suppose...

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It depends on what's causing the cognitive symptoms. Going gluten-free might help, but sadly, there's also a chance that it won't help if your cognitive difficulties have a different underlying cause.

For me, going gluten-free only helped a little bit. After my first few months of being gluten-free, I noticed that I wasn't as irritable or depressed anymore, but the diet has had no impact at all on my concentration, brain fog, or memory. And I've been gluten-free for over a year and half now.

You'll just have to wait and see whether your difficulties are caused by gluten or not.

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Took a good 6 months for me but I had to not only get rid of the gluten but dairy and soy for me before the social anxiety disorder, clinical depression and bad brain fog that I had had for nearly 30 years went away for me.

I can only eat a whole foods diet. When I deviate the least little bit my depression and anxiety comes back with a vengeance.

Hang in there and give it time, you'll get there.

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Additionally, it may help to note that the one thing that has finally started to help me with the brain fog has been increased activity levels. And by that I mean increased activity for the mind and body. I've started taking on more tasks to keep my mind busy and occupied, and I've starting solving riddles and playing puzzle games in my spare time. I know that it sounds daunting when your brain feels stuck in the "off" mode, but exercising the brain helps. Increased physical activity - things as simple as taking more walks - can really help as well.

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Eatmeatn4good - that is very inspirational. Thanks

healinginprogres - I wish you good luck in your healing. I know it is really hard to deal with, but it seems you are on the right track.

txplowgirl - how did you come to the conclusion you had to remove soy and dairy from your diet? Its so overwhelming to see all these reactions to food causing similar things.

I wonder if I don't better in 6 months if I should try an elimination diet where all you eat is brown rice and then slowly add stuff. I guess I'll cross that bridge when I get to it.

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I was pretty badly impacted cognitively and suffered from deep periods of depression off and on since childhood. By the time I was diagnosed I couldn't read any longer because I couldn't remember a sentence long enough to be able to read the next one. I had trouble with speech often calling things by the wrong names or being unable to get the words even out of my mouth. I had always been very intelligent but by then felt so stupid that I basically withdrew from most of the world. I was diagnosed in 2002 and didn't have much hope at that time that I would ever recover mentally. But I did. It was a slow progress but I did find after a couple years that I could read again, within a few months talking was easier but it was awhile before I got my selfconfidence back. As far as the depression goes that lifted fairly quickly for me but everyone is different. While my thought processes and memory took longer to come back than it took for the depression to lift they did come back fully

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I wonder if I don't better in 6 months if I should try an elimination diet where all you eat is brown rice and then slowly add stuff. I guess I'll cross that bridge when I get to it.

You might want to eliminate soy and dairy now for a bit. Then when you have been feeling better for a while add them back in one at a time for at least a week and watch for a return of symptoms.

If you do decide to do an elimination diet if you can get an allergist or naturopathic doctor to guide you that is a better way to go then dropping everything. The doctor will be able to give you a starting 5 or so foods that will have adaquate nutrients and calories. Just eating brown rice to start is IMHO not a real good idea.

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eatmeat4good, you have described the way I have felt off and on for more than 10 years.

Sometimes I feel like I'm "inside my head"... like I'm not really there... like I"m watching a movie of my life, or that I'm sitting in a seat in my head while things just happen and I simultaneously feel like I'm there and not.

I've tried to describe this to people, but most don't "get" it. I assumed it was related to my migraines because... well, when you can't explain something you blame it on something that you can't explain (like that makes any sense).

It's such a bummer to know that I could have made thing better years ago if I had only known... but at the same time, I'll take the view that what doesn't kill us makes us stronger... or at least deeper, maybe?

The biggest regret I have is in remembrance of all the opportunities I missed because I was so tired/sick/antisocial to pursue them. Not the big opportunities--it would be hard to keep me from keepin' on keepin' on... but the little ones. Not returning phone calls. Declining outings with friends. Reluctance to travel because of the fear that I would feel sick in a place where I wouldn't know where to run to if I got too tired/sick/miserable.

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The biggest regret I have is in remembrance of all the opportunities I missed because I was so tired/sick/antisocial to pursue them. Not the big opportunities--it would be hard to keep me from keepin' on keepin' on... but the little ones. Not returning phone calls. Declining outings with friends. Reluctance to travel because of the fear that I would feel sick in a place where I wouldn't know where to run to if I got too tired/sick/miserable.

Wow, this is so exactly how I feel...I honestly felt like such a bad person, or at least a bad friend, a hermit, lame, etc. And then I would just get mad at myself, blame myself, what's wrong with me. Thinking I was crazy or why couldn't I be this way or that way. And of course feeling like I was the only person feeling this way...I NEVER for a second thought that it was caused by some underlying problem...other than depression, but then why didn't meds seem to help all that much? Hearing that other people have felt this way and feel better after going gluten-free (even if it takes a while) gives me hope that I will have a life again :P

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txplowgirl - how did you come to the conclusion you had to remove soy and dairy from your diet? Its so overwhelming to see all these reactions to food causing similar things.

I did an elimination diet.

I had already kicked the gluten out and was feeling ok but still having problems. So I started with nothing but chicken, brown rice and carrots because I knew for a fact those didn't bother me. I ate that for 3 solid weeks, bleah, boring and not very appetising but I felt great. Then I introduced dairy first, bad reactions within 2 hours, lasted 2 days. Went back on my chicken and rice for another 2 weeks then added soy. Same thing. So on and so on for almost 6 months. It was slow going but I feel a lot better than I have in a long time.

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It is a common reaction to be very impatient for improvement at first. You have to realize that it took a long while to get there and it is going to take a while to recover from where you are at. You can't just turn off the switch and expect everything to be all right. The body has a lot of healing to do and it does it in its own good time, different for everyone. I wish you fast healing and much health and happiness, and I wish you the patience to wait for it. :) It may or may not take the elimination of other foods, but it is better to eliminate them early rather than later (speaking from the perspective of one who didn't know this at the time). It does speed things up to get down to a basic diet that doesn't bother you and then add things back in rather than try and figure it out willy nilly.

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My depression and mood has gotten so bad everyone says I'm negative all the time. And I am. I wont' deny it.

Just can't recall when it actually started, but it for sure has gotten worse. To the point of not being able to enjoy anything in life. Night out with friends becomes unbearable, not wanting to spend time with my kids, or listen to their problems. I found myself having to force interest in things I should enjoy.

Even my work, which i have always found interested has taken a back seat to me just loathing in self pity. And I've never been like that before the last year or so. Just muddling through each day like 'who gives a poop'.

Its no way to live for sure. and I'm sick of feeling this way.

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