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Gemini

Gluten does WHAT to the brain?

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Thanks for posting I was just looking at this a short time ago. Something I found interesting was the last line of the article-

" The psychosis that the woman experienced was an extreme condition and very unique, Fasano said. "

While not common I am not sure that it is that unique.  There is a fair amount of research that has been done on the effects of gluten on the brains and nervous systems of celiacs.  Doing a search with the words neurological and celiac at places like Lancet, PubMed and the NIH can bring up some really interesting studies. Thankfully this impact is slowly becoming more common knowledge in the medical circles.

Many of us have experienced in our families or first hand the way that the antibodies can impact our mood and thinking. It does seem miraculous when the clouds finally lift. I wish more doctors would test for celiac before pulling out the prescription pad, especially with kids.

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My first thought was how many people that have been labeled as mentally ill or psychotic actually have Celiac Disease and never get diagnosed?  Their whole lives spent battling these conditions, being flooded with various meds and no one looks at their diet or does other testing!  It really is tragic.  I always wondered whether Patty Duke was an un-diagnosed Celiac.  She was finally diagnosed with bi-polar and ended up dying of a perforated intestine, at the young age of 69.  Ya gotta wonder........:(

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I saw this the other day too & like Karen, wondered at the last line of the article. The article had me once again thinking about my deceased brother who was dx'd paranoid schizophrenic in his late 20's. He also had alternating constipation/diarrhea  but "they" always blamed it on his meds for the schizophrenia. We, his family, knew he had those issues prior to him being prescribed the meds but there is no telling the medical community something when you're talking about a mental patient. 

Okay, I know the guy is selling something but the research noted in the article is valid:

http://articles.mercola.com/sites/articles/archive/2013/06/22/gluten-grains-cause-schizophrenia.aspx

We knew about this back in the 50's & going forward. They even coined the term for it "bread madness". Why have we not recognized this in the psychology/mental health/institutions community for all these many years? Why does it seem to have been just shoved under the rug like some dirty little secret? 

Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me.

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"Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me"

My sympathies that is just tragic, as this story is.  I hope you are at peace knowing you are aware of your celiac and help so many lost, scared, and confused celiacs here. It can never bring back your brother but I hope it can give soften some of what you feel that was/is beyond your control. His suffering and your loss has made you a better advocate to yourself and in your work helping us.

I don't like my body or my  brain on gluten either. I do fear that people overlook the toll inflammation takes on the brain. It likely may explain decades of mental illness that was brain based inflammation unknown until changes in technology advancement catch up. However consuming gluten to study how one enters psychosis may not be the best method. Do no harm.

 

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Your brother sounds like mine, Squirmy.  He was a Type 1 diabetic and had flaming celiac symptoms to boot but his docs always, always blamed his diabetes on everything.  He lived in the country and the docs in his state just were so far from being Celiac savvy.  I doubt they ever diagnosed one. His health was failing so badly that in the end, with the 3 MONTHS of non-stop diarrhea going on, he became so dehydrated that he had a heart attack and died last August 4th. His biggest mistake was trusting these idiots completely.  I think his brain was so messed up and confused that he just couldn't understand what I was trying to tell him.......that good ole brain fog.  He did what celiac's may do when left untreated for years and years.....they slowly fail and then die.  It still is extremely painful for me to think about because I was close to him. 

I still see many people in my life that I think have it because of their extreme symptoms. Listening to them complain that the doctors aren't helping them. Try suing them for malpractice too......it would be too hard to prove. And then we have those who know there is something very wrong but won't give up wheat bread because that is unfathomable to them.  This disease can drive anyone crazy, for many different reasons.  :blink:

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3 hours ago, Gemini said:

Your brother sounds like mine, Squirmy.  He was a Type 1 diabetic and had flaming celiac symptoms to boot but his docs always, always blamed his diabetes on everything.  He lived in the country and the docs in his state just were so far from being Celiac savvy.  I doubt they ever diagnosed one. His health was failing so badly that in the end, with the 3 MONTHS of non-stop diarrhea going on, he became so dehydrated that he had a heart attack and died last August 4th. His biggest mistake was trusting these idiots completely.  I think his brain was so messed up and confused that he just couldn't understand what I was trying to tell him.......that good ole brain fog.  He did what celiac's may do when left untreated for years and years.....they slowly fail and then die.  It still is extremely painful for me to think about because I was close to him. 

I still see many people in my life that I think have it because of their extreme symptoms. Listening to them complain that the doctors aren't helping them. Try suing them for malpractice too......it would be too hard to prove. And then we have those who know there is something very wrong but won't give up wheat bread because that is unfathomable to them.  This disease can drive anyone crazy, for many different reasons.  :blink:

Gemini...I'm so sorry about your brother.  (((Hugs)))

It's just awful...I too have relatives that I believe have celiac.  One uncle is deteriorating...and in and out of the hospital.  He hasn't been tested for celiac and no one wants to hear it.  

I also have a friend whose mom has been diagnosed with early onset alzheimers and end stage kidney disease.  She's not a drinker at all.  This is after surviving breast and lung cancer and she's never smoked.  Last year she was in the hospital with severe diarrhea and dehydration.  Has she been tested?  No.  I've talked to my friend and she says she doesn't think she'd go gluten free anyway.

Sigh...it makes me so sad.

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4 minutes ago, icelandgirl said:

Gemini...I'm so sorry about your brother.  (((Hugs)))

It's just awful...I too have relatives that I believe have celiac.  One uncle is deteriorating...and in and out of the hospital.  He hasn't been tested for celiac and no one wants to hear it.  

I also have a friend whose mom has been diagnosed with early onset alzheimers and end stage kidney disease.  She's not a drinker at all.  This is after surviving breast and lung cancer and she's never smoked.  Last year she was in the hospital with severe diarrhea and dehydration.  Has she been tested?  No.  I've talked to my friend and she says she doesn't think she'd go gluten free anyway.

Sigh...it makes me so sad.

Thanks for your kind words about my brother, Icelandgirl.  So nice to hear from you again.  :)  Yes, this is what drives me crazy the most....people with obvious and potentially life threatening symptoms like diarrhea with severe dehydration.  I had that at the point when I was diagnosed but it wasn't the doctor's who suggested a Celiac panel, it was me.  I mean, WTF is wrong with them?  People do not have severe diarrhea and dehydration from mild problems.  Celiac is no longer an unheard of condition, gluten free is everywhere. And, don't even get me started on why so many people are developing Dementia and Alzheimer's today.  My father has Dementia and is at home with round the clock care. He has the body shape, like I did, of a classic Celiac. Bloated belly and stick arms and legs. My family will not have him tested, either.  They treat me like I am a crazy loon over that one.  I do not think he will make a miraculous recovery on the gluten-free diet but it could make his remaining time more comfortable.  When I bring him food, it is always gluten free and he cannot tell the difference.  He loved the gluten-free muffins I brought him and it made me sad to think I am the only one who cares.  Honestly, life is such a trial at times and it's because of difficult people who are afraid of change.

How are you doing?

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21 minutes ago, Gemini said:

Thanks for your kind words about my brother, Icelandgirl.  So nice to hear from you again.  :)  Yes, this is what drives me crazy the most....people with obvious and potentially life threatening symptoms like diarrhea with severe dehydration.  I had that at the point when I was diagnosed but it wasn't the doctor's who suggested a Celiac panel, it was me.  I mean, WTF is wrong with them?  People do not have severe diarrhea and dehydration from mild problems.  Celiac is no longer an unheard of condition, gluten free is everywhere. And, don't even get me started on why so many people are developing Dementia and Alzheimer's today.  My father has Dementia and is at home with round the clock care. He has the body shape, like I did, of a classic Celiac. Bloated belly and stick arms and legs. My family will not have him tested, either.  They treat me like I am a crazy loon over that one.  I do not think he will make a miraculous recovery on the gluten-free diet but it could make his remaining time more comfortable.  When I bring him food, it is always gluten free and he cannot tell the difference.  He loved the gluten-free muffins I brought him and it made me sad to think I am the only one who cares.  Honestly, life is such a trial at times and it's because of difficult people who are afraid of change.

How are you doing?

I get so frustrated!  My friend's mom is 67...there has to be a reason for this.  And all she says is, they have no idea how she can be in end stage liver disease!  

Anyway, I'm doing ok.  I got cc'd on vacation which stunk.  I had forgotten how terrible it feels.  Ugh!  The good news is that my vitamin D level is finally moving up...not inching.  It increased by 3 points in the last 6 months.  Previously, it was inching with increases of .5 or .6.  So I'm pleased that I'm absorbing better.

Bartie's passing really shook me up.  This disease is a scary thing as so many people go undiagnosed for so long.  Then other people have disappeared from the board(nvsmom), who were huge contributors and I worry that they aren't doing well.  But I am a worrier.

How are you?

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5 hours ago, icelandgirl said:

I get so frustrated!  My friend's mom is 67...there has to be a reason for this.  And all she says is, they have no idea how she can be in end stage liver disease!  

Anyway, I'm doing ok.  I got cc'd on vacation which stunk.  I had forgotten how terrible it feels.  Ugh!  The good news is that my vitamin D level is finally moving up...not inching.  It increased by 3 points in the last 6 months.  Previously, it was inching with increases of .5 or .6.  So I'm pleased that I'm absorbing better.

Bartie's passing really shook me up.  This disease is a scary thing as so many people go undiagnosed for so long.  Then other people have disappeared from the board(nvsmom), who were huge contributors and I worry that they aren't doing well.  But I am a worrier.

How are you?

I'm ok, just a little tired right now.  Lots of stress getting elderly parents and in-laws taken care of. My thyroid took a dip low (no surprise there) so I had to increase dose by a quarter grain. Overall, I am not dragging all day but waking up and getting going in the morning is slowwwwwwwww.  I'm sure you understand that!

Yeah........Barty.  I thought of her for DAYS on end and it just saddens me to no end that such good people are the ones being taken.  Sometimes life is just so unfair. We all know that but there are times when it really hits you in the gut. There are times I think they are the lucky ones with the way the world is going these days. This terrorism plague is unnerving and I am really getting mad about it. Dear God, please stop this shyte! 

I also miss nvsmom and others who have not been heard from. I hope she is feeling better and is just busy with life. 

I got glutened on vacation about 6 years ago on the first day in Liverpool.  Jeez, was I sick!  I know how you feel but take heart........that was the last time I was bagged on vacation.  The longer you are gluten free and heal, the faster you recover from hits. You also get very good at not being glutened. It has been almost 2 years since it happened to me last so after 11 years gluten-free, I think I am doing well with that. I still have a little work to do with the vitamin D levels but I work so seeing much sun isn't happening.  My levels have doubled but they are still under 50. This whole Celiac thing is a part time job!

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