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From:
Catherine Bertrand <[log in to unmask]>
Date:
Thu, 13 Jul 2000 16:06:32 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to everyone who gave their input on my "self-limited diet" query,
regarding my son.  Sorry it took me so long to summarize, but I kept
getting more and more replies!  Anyway, this is the gist of it:
Most of you commented that excessive thirst could point to diabetes and
recommended we have him tested for this, pointing to a high incidence of
co-morbidity.  A few also linked the thirst to anemia, which he does in
fact have.  He will be tested for diabetes as well though.

One mention was made of a child who literally didn't feel the hunger
sensation and was given an appetite stimulant, Periactin.

One mention was made of intestinal yeast, and yes, we have already
tested him for this, despite its controversiality, because of his
autism.  Most of the medical approaches for treating autism aren't
considered mainstream because doctors still have it in their heads that
it is a psychological disorder because its noticeable manifestations are
behavioral, rather than physiological disorder.  Funny then how
physiological treatments (GFCF diet, anti-yeast regimens, nutritional
supports, some drug therapies, secretin injections, etc) can ameliorate
some of most of the problems associated with it.  I have to remind
myself how long doctors used leeches and bleedings to treat illness when

I start to favor "medical opinion" over overwhelming parental  reports.
But that is neither here nor there.  According to his tests he had no
evidence of systemic yeast infection or fungal metabolites - which was a
big relief to me, since we had done a trial of Nystatin previously and
it affected his appetite so negatively - he actually stopped eating for
a few days, other days he would eat a grand total of one french fry.
Hardly enough for a growing boy.

One person mentioned Vitamin A deficiency and Cod Liver Oil.  That is
something we are looking into regarding his autism treatment as well,
but I am proceeding with extreme caution on that one because Vit A is
one of the ones you can overdose on, and he is one so many supplements
as it is (DMG, folic acid, magnesium, zinc, iron, calcium, a GF
multivitamin, Vit C, flax seed oil for the essential fatty acids, aloe
vera juice - I think I got them all there).  But that will likely be
something we try.

One mom mentioned that her celiac daughter is extremely picky and she
believes it is due to her realization that some foods make her feel
sick, so she is overly wary of food.  This makes a lot of sense.  But
the quandary for me is: does this mean there is some other offending
food in his diet that is still making him feel this way, or is it his
memory of how it felt to have gluten and casein in his diet?  Hm.
One mom sent a very helpful report on her son and their use of
pancreatic enzymes with him.  Since secretin is a pancreatic hormone,
and it has been very helpful for some (though not all) autistic
children, and there is clearly a gut-brain connection, the success of
this enzyme with her son is not surprising.  I believe digestive enzymes
will be our next step in treating his bowels, but I am concerned because
it is my understanding that you cannot break open a capsule and pour it
into a drink or on food since it will begin digesting the food on your
plate and can digest your mouth and esophagus as it passes through
each.  There is no way Ben can take a pill.  I'd be interested to hear
from anyone with experience giving a very young child digestive enzymes
safely.  This mom also recommended a stool fat test, which I will be
asking my son's doctor to order as soon as I get offline.  She also has
her kids on the Feingold diet, which we partially follow in that we have
eliminated all artificial colors, and most preservatives from his diet,
relying on natural foods to reduce the detoxification burden his body is
under.  We might all be healthier this way, eating only what our bodies
were meant to consume!  What a concept!  Her remark that, "I think the
excessive thirst is a clear signal that the body is trying to achieve a
balance or rid excess "toxins" of some sort," made a lot of sense.  It
is interesting that while his increased urine output (due to his
increased liquid intake) diluted his amino acids test, his CBC tests
tend to show normal values, indicating that despite dilute urine, he has
normal levels of these things.  Could it be that he would have
dangerously high concentrated levels of these elements if he did not
flush his system as he does?  Food for thought.

Many, many of you offered your thoughts on the children you regularly
deal with and their penchant for picky eating.  It is true that
toddler-hood is known for its selective diets and power struggles,
however this does go beyond that.  Way beyond.  I have a neuro-typical,
non-celiac daughter also and she was our "normal" picky eater, still
is.  This is an entirely different ball game, and there are dire
nutritional, and therefore developmental, implications.  It isn't merely
about variety in the diet, it's also quantity.  One french fry a day, or
one cookie a day, or one handful of popcorn a day, or nothing to eat at
all a day, for days, even months on end isn't healthy.  As I said, since
taking him off of casein he has increased his quantity and selection of
foods, but it is still way below the number of calories he needs to grow
and very low in fat, which young brains really need.  But I thank you
for the good will behind your suggestions.

One mom of an autistic son sympathized as she had difficult mealtimes as
well, and all the well-meaning advice of friends and general
pediatricians just didn't apply to her situation either.  Thanks for the
note.

Several of you indicated that additional food intolerances might be at
work here.  While that is the last thing I wanted to hear, it is also
highly likely to be true.  The hard part is doing the elimination diet
to figure out which one it is, and praying it isn't corn or soy, as some
derivative of corn or soy seems to be in everything, even many natural
foods.

One mom detailed how they extend dinner time over two hours, not because
of a power struggle but because of an awareness that her daughter's
stomach really takes that long to handle what is being put into it,
taking a few bites, then waiting about 10 minutes, throughout the whole
meal.  Wow, what patience!  I have noticed my son eats slowly, he could
be self regulating if this is his problem.  I will watch it more
closely.  I had noticed a while back that on some days when I allow him
to snack and run all day (usually very busy days for me) he would eat as
much as he would have at a meal, and there was a lot less heartache and
struggling.  And since nutrition, not proper manners is the goal here,
those days are becoming a lot more frequent:)

One mom thought it might be cross-contamination.  I found out a couple
of months ago that a brand I used a lot of, Bob's Red Mill was
cross-contaminated so I eliminated it right away (lots of money down the
drain).  But that was a couple of months ago.  One mom said that it
takes a year for the body to eliminate all gluten - I had previously
heard up to 3 months.  This first poster also said that the only truly
GF brands out there are Jowar and Authentic Foods.  This can't be right,
can it?  (Feedback please.)  I just ordered a whole bunch of Ener-g and
Glutano flours from a GF-only store.  In any case, I don't think there
is any remaining cross-contamination.  But it can't hurt to look more
closely.

I heard from one autistic adult, thank you.  She reminded me of the
possibility of it being a sensory issue.  And she brought out the fact
that his stools may never be completely resolved - not exactly
comforting, but realistic.  I guess there is some individuality to
everyone's stools, its just not something that comes up in conversation
very often, unless of course you are a celiac :) !  It was encouraging
to hear from someone with autism in particular.

Wow!  Was that long enough for you?  Hope I didn't forget anyone, and
thank you for your input.  I will let you all know how the tests/diet
trials come out.

Catherine

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