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From:    Sherill Roberts <[log in to unmask]>

> Although diagnosed with celiac in 1947 when I was a baby, it was not
> known that I should avoid gluten. After recovering from the crisis
> (during which I nearly died), I resumed a "normal" diet with no obvious
> symptoms of celiac. I lived my first 30 years just fine, and then all
> hell broke loose. I developed schizophrenia, complete with
> hallucinations and voices, I had killer headaches, convulsive seizures,
> itchy rashes (DH, I know now), anemia, catatonic depression and
> hysterical episodes. (Who wouldn't be hysterical after all that!?) The
> good doctor who rediagnosed me guessed that the wide range of my
> symptoms was the result of vitamin and mineral
> deficiencies as a result of years of malabsorbtion during my "latent"
> celiac disease.  I am now healthy again, after 20 years of a GF diet,
> and I have no desire to cheat.

Hi Sherill -

Your situation almost exactly resembles my father's.
He was born in '43, was very sick as an infant, went on a special
diet (but it wasn't GF), apparently got better, only to nearly die
almost 50 years later when the CS came back like a demon out of Hell...

I've been meaning to post his story, with a list of questions, for a
while now, but I've been the Bad Son and kept postponing it...
Part of me keeps hoping that he'll get better or something.

I don't live near my parents, so I don't have to see what my family
goes thru on a daily basis.  I guess I'm like an ostrich w/ it's head
in the sand... i.e. 'cause I don't see him, I just *hope* he's getting
better...

But enough with me and my failures as a son...

My dad has been on a GF diet for, dunno, 3, 4, years now.
Something like that...

My mom does the best she can, but I don't believe she's being
careful enough.  Not because she doesn't care, but more from lack of
information.  My dad *just* got a computer (like, last week), and
I'm hoping to get him on this list, once he gets past his fear of turning
the thing on...  In the meantime, I've been saving selected posts from
the list and mailing them home in bunches.

I really don't know if I've been a help or not.

Anyway, the one thing that you and my dad differ on is that, well,
he doesn't seem to be better... mentally, anyway.

I hate sharing this in public, but I have to.
Physically, well, his weight did go up.
He's 5'11 and never weighed more than 157 in his entire adulthood --
even when "healthy".  When he got sick 4 years ago, his weight
plummetted to around 120.  He was ghastly.
Through the GF diet, and Prednisone for a while ('cause he's
totally Refractory Sprue), he's gotten his weight back into the
mid-50's.  He's been off the Prednisone for a long while now, I believe.

He does have osteoporosis now, thanx to the malabsorption and the
Prednisone, and he's probably getting arthritis.

That's the physical aspects.

Mentally, he's gone on and off Zoloft numerous times.
Every time he went off, it was 'cause of an ego thing that, as a guy,
I guess, I can relate to; i.e. didn't want to have to take a drug,
thought it was clouding his mind, etc.

Well, I think he's been back on it for a while now, but, whereas
he used to be "ok" (and marginally so) in the past, I think he's
deteriorating.  He's had violent mood swings in the past that we
would jokingly call schizophrenia (we even named his different
personalities) -- but this is a little different now.  I wouldn't
say that he's a classic schizophrenic; i.e. he doesn't really assume
distinct personalities that have no knowledge of each other, etc.

He's just very moody.
And I'm sure alot of it has to do w/ the constant physical pain.

But there's other manifestations that aren't due to the pain.

<sigh>

Ok, another public statement...
I, myself, am Obsessive-Compulsive (which I'm on another list for).
My dad believes he passed it to me, because he's "mentally defective",
blah blah yada yada
Who knows.
I think most of my problems are "learned".
Dunno.
But enough about me, again.

Anyway, my dad has, in the past 4-5 months, gotten *very*
Obsessive-Compulsive about things.
This has been distressing me to no end, 'cause I battle it constantly,
and it pains me to see him slipping into *my* disorder.

He's become very reclusive, very distant, very moody...
He doesn't talk to my mom at all, really, and blames her for
weird things she didn't even do...

His OC has manifested itself in the form of Obsessive Hoarding.
I have to laugh a little here, 'cause you guys should see some of
the compulsions we share w/ each other on the OCD list...
But my dad is now totally whacked out about taping things off of
the TV/cable.  The house is rapidly becoming a library of VCR tapes...
And books.
We've always had lots of books.

But this VCR thing is totally new, and totally out of control -- to
the point where he's taping shows on 2 different VCRs, forbidding
people to touch the TV, having my mother get him up at like 4am
so that he can tape something he saw in the TV guide, etc.

...

I can't get to my list of question right now ('cause I'm OC, I'm a
damned perfectionist and have write up the perfect case history
about my dad -- I'm actually forcing myself to type this up, in
it's "non-perfect" form), but I was recently told about Effexor,
and am going to suggest that he look into it, or, dammit, just start
buying it for him.  I know you're supposed to switch meds after a while,
and, like I said before, I don't think he's ever tried anything but the
Zoloft.

So, my big question right now is about other Celiacs who's
suffered these same kinds of *mental* problems, and, assuming
their diet was totally GF, what they did for them in the way of
drugs, supplements, whatever.

Also, are there any Celiac support groups for *family* of Celiacs,
'cause I really think my mom could use it.
They live in upstate NY, btw, about an hour and a half NW of NYC.

Thanx for letting me vent, rant, ramble.
I hope to be able to share more next week.
I'm also going home next weekend, so I'll have another first-hand look
at his condition.
(although he's good at hiding it when other people are around...)

Take care, and thanx for listening and for any help.

Ron