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From:
Niko Antalffy <[log in to unmask]>
Date:
Sat, 15 Apr 2000 16:37:26 +1000
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear List,

I got so many amazing responses, thank you all. It took me this long to
tackle the task of summerizing.

My impression of the answers is that almost everyone thinks that there
is at least the possibility of a body-mind connection when reacting to
gluten. Many of you have sent me personal stories often refering to more
than one person in the family (including the sender) who experiences
mental/cognitive/emotional reactions. The intersting thing is that those
who experience stronger mental reaction to gluten tend to be the ones
who are diagnosed under another rubric, like schizophrenia or MS, or
'self-diagnosed' or those whose digestive response is not as distinctive
(my case belongs here too)... but this is a generalization of an
impression. If it was even vaguely true, I was hypothesizing for a
moment, maybe there are those of us who strongly react in the gut but
not so much in the mind, and those who strongly react mentally but not
so much in the gut. So those who react more in the gut would have a much
'easier' time getting a diagnosis as the medical establishment's gaze is
fixated on the digestive system in relation to gluten. Pity.

I haven't differentiated between biopsy diagnosed and 'self-diagnosed'
people as I think it matters little for the uncovering of this
connection and makes the tally very messy. There are those of us who
can't or don't want to achieve an official diagnosis, including myself,
for many different reasons (I went gf way early and refuse to torture
myself now for another sloppy biopsy as I'd get so psychotic and sick
that I might suicide, what's the point?), but who still do everything
(follow lists, campaign, experiment, volunteer, put in work, inform and
scrupulously adhere to a gf diet!) and suffer everything that all the
others do. Anyway, I'll stop there and just give you the results (I
included myself in the tally):

Sender's reaction to gluten:
Anxiety/freaky feeling: 2
Autistic-like symptoms: 1
Body jerks: 2
Clinically depressed: 1
Concentration lapses: 2
Depressed: 9
Euphoria after lifting of symptoms: 2
'Fuzzy' feeling: 1
Hearing voices/auditory hallucinations: 4
Irritable: 4
Less motivation/lethargic: 1
Migraines: 3
Mood swings: 10
Obsessive: 1
Psychotic/'mental': 2
Visual hallucinations: 2
Waves of fast heartbeat: 1

Family member's reaction to gluten:
Bipolar/schizophrenia/psychotic: 3
Concentration lapses: 1
Hallucination: 2
Irritable and angry: 1
Mood swings: 3
Motor skills decrease: 1
Nightmares: 1
Paranoid: 1
Violent: 1

I'm sure though that if the whole list was given to everyone many more
ticks would come together as you tended to describe the whole experience
under one or two umbrella terms. Sorry for overlapping descriptions.

There were also four people who had CD and had family members with
schizophrenia who wouldn't try a gf diet (or attempt a diagnosis) so no
connection cannnot be established. Some of you mentioned that up to 6
family members are celiac while one or a few 'only' have/had
schizophrenia without an attempt at diagnosing celiac. What a terrible
shame that some people don't get a chance to be saved by a gf diet...
literally.

Some of you have pointed out that some of these connections are very
well documented indeed (and sent abstracts of, and links to articles),
among them gluten's effect on serotonin metabolism that in turn causes
migraines, depression and so on.

It was also brought to my attention that in med school some of these
symptoms are taught as 'Celiac Psychosis', it's good to know, but why
don't doctors know then I wonder? I haven't been validated once yet by a
medico, but at least I know now from all of you who kindly answered,
that I'm really not alone, I'm not going mad, or, well, I am actually
going mad if I don't watch my diet.

Well, the message seems to be clear enough: KEEP SANE BY BEING GF!
Niko

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