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Blu-1

Has Anyone Found Anything That Helps With Memory Retrieval?

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Hello,

 

I have found ways to improve most of my symptoms but am at a loss on how to improve my memory. If I was to summarize my memory deficit it is an inability to retrieve words on cue. I also don't have much confidence in my ability to memorize new things either. My attention span is rather like a little kid running all over the place. I suspect I might be deficient in something. For example, if I don't take vitamin D I get peripheral neuropathy within a few days. Has anyone found anything that helps their memory apart from the obvious - don't eat gluten?  :)

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I was also strongly impacted in that area. At one point I thought I might even be developing some form of alzheimers. It did resolve for the most part but it did take a long time. I found sublingual B12 to be helpful and used to play some of the memory games that can be played for free on the internet. Sorry but I can't remember the names of the sites but a web search should bring some up.

I hope this resolves soon for you as it can be so very frustrating. 

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What were we talking about?

We were talking about memory issues. Something very serious and distressing to those of us who have neuro issues from gluten. My aphasia got so bad I had a hard time even holding a conversation and couldn't tell you what a fork was if you held it up in front of me. It was the most frightening symptom of celiac I had and greatly impacted my ability to even teach my children how to cook or clean a room. 

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This was one of my scariest symptoms too (that and walking into door frames and falling down stairs for no reason), and it's gotten better with time. I forgot days of the week, the names of colleagues I'd seen every day for years, and common nouns. Alzheimer's runs in my family, so although I'm only 38 I was really terrified that I had it. After a year gluten free my memory is still very bad, and I'm constantly trying to cover it up so that others don't notice it in conversation, but it still seems to be improving pretty steadily. I don't have an official celiac diagnosis and am still trying to sort out whether gluten is the sole cause of all my symptoms or just exacerbated another underlying condition (being tested for ulcerative colitis and Crohn's next week), but it does seem to be solely or primarily responsible for the neuro stuff. I'm not sure how long you've been gluten free, Blu-1, but hopefully your memory issues will improve with more time.

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What were we talking about?

 

I thought that was funny.  :lol:   Being affected by CRS for the last 20 years I find humor wherever I can since I can't remember jokes.

 

Don't know what CRS is?  Can't Remember Shit   :P

 

Colleen

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I thought that was funny.  :lol:   Being affected by CRS for the last 20 years I find humor wherever I can since I can't remember jokes.

 

Don't know what CRS is?  Can't Remember Shit   :P

 

Colleen

lolz - yeah, i resemble that remark :D

 

in my un-diagnosed years, i have chunks of time that are missing.  scaryyyy, because i raised 4 kids!  they are all like:  hey, mom, remember when we blah blah blah.  i'm like:  nope.  and then they go into great detail which includes some very out of the ordinary event <like, A NORMAL PERSON WOULD REMEMBER but i'm blank.  

 

they say your memories are still there............  that you just have to retrieve them.  maybe that's where the b12 (and i have heard ginko biloba but there is no proof that actually works - but how would they know that.  you would have to have a parallel universe.  and be twins lolz)  

 

i always considered crossword puzzles and thinking games a waste of time, but i have been doing the crosswords.  instead of cleaning hahahaha .....  j/k i wasn't gonna clean anyway....  lololz

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I found that talking out loud, to myself, helped.  Make up a topic and expound.  It helps you practice retrieving words.  Might want to do it in private - people will avoid you and look at you with fear if you are talking about Troops in Afghanistan or making up a story about witches and vampires while shopping at Walmart!   :lol:

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I am memory problems something fierce.  Six months ago I would have swore I was getting early onset Alzheimer's, I'm 37. I am still having problems, though they are not as bad.  I wasn't trying to offend anybody by trying to make light of the situation, sometimes that is the only way I know how to cope. We know it is our disease and hopefully those around us understand as well. 

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I am memory problems something fierce.  Six months ago I would have swore I was getting early onset Alzheimer's, I'm 37. I am still having problems, though they are not as bad.  I wasn't trying to offend anybody by trying to make light of the situation, sometimes that is the only way I know how to cope. We know it is our disease and hopefully those around us understand as well. 

i thought it was funny :D  i have been accused of having adhd (not by a doctor...  )  but i have always had a short attention...  o look a squirrel...!  ;)

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I also have memory problems and at age 28 that is frightening to me. It is well known by family and friends that if I don't remember it's OK - because you just don't expect her to.

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I also have CRS, but I'm turning 70 next month. People tend to cut me some slack because of age! I have a sweat shirt with the Greek letters Chi Rho Sigma on the front. Looks just like a sorority shirt, but people who "get it" seem to like it! 

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I had severe memory issues for about a decade prior to celiac diagnosis...it was one of the first things that made my family notice things were deteriorating because I had an excellent memory for my first 35 years...so when I started saying regularly...."I don't remember that" my family and close friends couldn't believe it. Also had the can't pull the correct words out of the brain-itis for a very long time and it returns when I flare.

Thankfully, my memory has returned and I am enjoying reliving many fond ones lately. It did take a very long time to recover from my memory issues and there are still a few holes...hoping to get even more back with time.

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I think B12 helps... or at least it helps the brain-fog, which... umm... what was I going to say...?

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I had severe memory issues for about a decade prior to celiac diagnosis...it was one of the first things that made my family notice things were deteriorating because I had an excellent memory for my first 35 years...so when I started saying regularly...."I don't remember that" my family and close friends couldn't believe it. Also had the can't pull the correct words out of the brain-itis for a very long time and it returns when I flare.

Thankfully, my memory has returned and I am enjoying reliving many fond ones lately. It did take a very long time to recover from my memory issues and there are still a few holes...hoping to get even more back with time.

That gives me hope as I have had difficulty retrieving memories and words over the past few years.  8 months post-diagnosis and I don't stumble over words like I did a year ago, but memory issues seem to linger and it's quite annoying.

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That gives me hope as I have had difficulty retrieving memories and words over the past few years.  8 months post-diagnosis and I don't stumble over words like I did a year ago, but memory issues seem to linger and it's quite annoying.

Hang in there....for a very long time I didn't think this would improve. It did and still is :)

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Hang in there....for a very long time I didn't think this would improve. It did and still is :)

 

 

I echo this. My family knows not to ask me about 2008-2010. I have a great brain for trivial pursuit and I can remember stuff from my childhood very vividly , but those few years in what I call gluten head hell....one big scary bad dream. Some of that is a bit of a blur, but I kept a journal the entire time because I knew something was wrong and until I was diagnosed, it was very scary. I knew it wasn't Alzheimer's because I know how it manifests, but I did have trouble with numbers, (messed up the check book a few times) fumbled for words, my concentration was shot and I could not  retain new information....and I forgot how to cook. That's impossible. I am an excellent cook. That made me cry more than once.  I read 3 or 4 books at a time, but at one point, I could not read a paragraph without having to go back and read it over and over for it to make sense. It was an awful time, but once I started to heal and vitamin deficiencies were resolved, things got much better and my memory is as sharp as it was....at least I think so.

 

 

Hang in there...it gets better, I promise. 

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I would go to the store and buy everything but what I went there for, sometimes I never even made it to the store at all.  I started calling my boyfriend by my ex-husband's name, never once doing it in the three years previous that we have been together.  I didn't even know it did it.  I was given a different position at work and during the training they thought I was a complete moron because they had to explain things over and over to me.  I finally quit, I had already missed so much work because I was getting too sick.  I suddenly became dyslexic, and in everything.  I would write my words backwards, talk backwards when I could even talk at all.  I pointed a lot, asking my boyfriend to turn on the..................................................that thing over there on the table, you know....that thing with the thing........... oh, the lamp. I was afraid to go out in public, afraid to talk on the phone.  I was getting terrified. Looking up all sorts of things on the internet, never quite coming across anything that fit.  If only I would have thought food problems. That was two and a half months ago and now it only happens with a glutening and when I am really tired.  I am awaiting the days where it doesn't happen hardly at all.

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