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My son was born with multiple problems: he had a diaphragmatic hernia, was
on a respirator for months, and an ECMO machine, which left him with more
problems. He is a great kid, but has never learned to eat, as a result of
all the treatments. He is beginning to taste food.

As a result, I've had complete control over his diet. Which is scary! He
would get diarrhea for weeks at a time, which is how I got into all this
food allergy stuff. I didn't really believe in it before. I started
experimenting on myself too: and discovered my body really doesn't like
gluten.

Anyway, when he gets any gluten, or anything else he is allergic to, he gets
these brown circles under his eyes. The next morning he coughs up tons of
phlegm and is fairly un-interested in food, might throw up.

Now, prior to "tweaking" his diet, he threw up 2-6 times a day, and had tons
of phlegm all the time. I was following the diet prescribed by the hospital.
It was supposedly gluten-free, or at least low on gluten. But it had lots of
soy, which I suspect is a problem also.

I had him allergy tested, because he was getting so many sinus infections
(constantly, and on constant antibiotics). He turned out to be allergic to
wheat (which, supposedly, he was never exposed to at that point!), and eggs.
But not to milk or soy. But he gets diarrhea from milk and soy, and not from
eggs. So I'm not sure about the allergy tests. I think they test for IgE
reactions, but most "food allergies" are really IgA or IgG reactions, and
those globulins are mostly in the intestinal tract, not the blood.

Now, I've started changing my daughters' diet too. We no longer have wheat
in the house, for the most part. There are SOOOO many issues with wheat
besides "celiac"! I would like to write a book myself, called "the long and
bloody history of wheat" if I could get the time to research it. Have you
ever stopped to wonder why the great strides in technology were all made in
the wheat-eating countries? Rice and millet are just as good calorie-wise. I
think wheat causes Aspergers (a type of Autism), and most of the great
engineering-types are Aspies.

Anyway, when she goes out and has wheat, SHE gets dark circles too. And
usually has one or two "violent" nonsensical episodes the next day (which is
unusual for her, she's a sweet girl). She ends up yelling "You aren't making
any sense! You are making it all too complicated!" and running off crying.
Interestingly, my husband used to say the same thing, when HE was eating
wheat (also in an angry way). We talked about it, and he seriously did not
understand my words. It's like his brain gets scrambled. Which is a typical
Aspie thing: both he and I are programmers (the typical Aspie type), and the
type that according to researchers is more likely to have Autistic kids. My
son had some of the Autistic traits (slow to talk, in his own world, can't
stand confusion or noise), but since we've changed his diet he is more
social and noisy.

So, all of us are on non-wheat diets. We DO eat desserts, homemade, made
with sorghum for the most part. Very tasty. Not low carb or low fat. But my
husband has lost 20 lbs, and my daughter has slimmed down (she grew up but
stayed the same weight). They do eat less and get full faster. My belief is
that the gluten in wheat gloms on to the villi. The villi are what controls
a lot of the appetite --- they absorb bits of liquid and your brain tries to
decide the nutrition content of the meal (which won't get really digested
for about 20 hours) and decide based on that how much you need to eat. The
gluten fouls that up big time. Casien might too. Have you noticed that about
ALL the diets that claim to do great things for your body lately cut out
gluten and casien?

The Lancet had a study (which I have not been able to get, so far) that
seems to indicate that gluten causes changes in EVERYONE'S villi, not just
celiacs (celiacs just get it worse). There are studies on mice which seem to
indicate the same thing. Which might be why there is such an epidemic of
IBS: the whole world has gone to wheat-based foods. Medscape has a GREAT
article on IBS: it is kind of a pandemic, at this point: it affects 20% of
the US population, and interestingly, MORE in other countries. I think wheat
is being introduced to a lot of populations that never had it before, and
are therefore more genetically susceptible.

If your villi get attacked, they don't do their job, which causes yeast
overgrowth. Which causes "leaky gut", which causes more allergies. Allergies
are on the rise too. The introduction of wheat, combined with the lack of
traditional "fermented" foods (which fight the yeast), are probably to
blame.

My theory anyway. My family gets lots of kefir and fermented vegies now, no
wheat. Everyone is much, much better. And happier. No more depressive
episodes (I should mention I had chronic depression and anxiety in the past,
which is also gone). My husband and I rarely fight any more. Kind of like a
"country music song played backward", as the joke goes.

###
Myself and family would be very interested in sharing information about my
brother Avery. He is autistic, however he is very high
functioning...basically he has behavior problems and had extreme speech
delay. He is very alergic to gluten, rye, casine, corn, and much more.
Although he at one time had leaky gut, he has not been diagnosed
celiac...but they said he had it until the leaky gut was cleared
up--basically they said he grew out of it...I know that that just doesn't
happen. He does not have stomache problems from eating his alergy foods, and
when it comes to gluten and rye...it is all behavior.

The last time he ate Rye, he made the decision that he would never eat it
again. He had so little physical control over his body and his behavior,
that he even aggravated himself. His body shook so bad, he could not grab
things. It was as if someone was holding his waste and and was shaking him
full strength. Couldn't brush his teeth, because he couldn't get the tooth
brush in his mouth.

As for wheat gluten, it is like a drug for him. His visual perception
changes, and he stims like crazy. Putting his fingers close to his eyes,
crossing his eyes, spitting (raspberries), stomping...all sorts of wacky
behavior. The credits from a movie, gets him right up to the screen stimming
and stomping and more spitting. He actually used to steal bread and stuff a
piece or two in his mouth when no one was looking...then drive everyone
nuts. He knows if it is coming on, and had told me when I have had him out,
that he was needing to stim and asked if we could get home.

He now takes special digestive enzymes, and very rarely does this
happen...unless my mother takes him out, and forgets to bring the enzymes
with her and he eats something. Then he starts all sorts of trouble,
depending upon what he eats. Some of his other alergies cause less stimming
and more mischevious behavior. Like teasing my sisters and my daughter.
Trying to do anything to anger the adults. Just to cause havoc. It is really
incredible....

###

My son was in fourth grade (before my diagnosis) and his teacher and
pediatrician on the teachers insistence decided he was ADHD. After going GF
he was fine. He still gets ADHD symptoms when he has a mistake in ingesting
gluten. His pediatrician was glad to diagnose his gluten intolerance when
she realized he no longer presented any symptoms when he was on the diet.
But and this is a big BUT only after my diagnosis. It is now my gut feeling
that many things like ADD, ADHD, and autism can be eliminated or helped by
the GF diet.

###
In these CD stories, I am the first child.
>From very early, I was afflicted with separation anxiety. My mother had to
sit outside the classroom door in Kindergarten for 6 months. I would scream
and often check to see if she was there. All through my childhood I was
depressed and filled with anxiety for which there was little cause. I was
learning disabled and dyslexic. I could not read. I found it hard to
concentrate. Math was a real problem because I could not carry figures in my
head long enough to add them up. When I was 9 we went to Norway by ship. The
ship's engines failed and we were adrift for over a month. At that time my
mother tried to get me to practice my reading. During this time the ship's
galley was out of bread. They had flour and made some yeastless bread that
tasted so bad that I would not eat it. One day I opened the book and I still
remember that I could read the whole book. All the the lessons that I had
been taught stayed with me and came together and I could read instantly. It
was not until I discovered that I had CD at age 55, that i could begin to
understand the phenomena that the gluten was messing up my thought patterns.
I remember feeling really happy and not at all anxious (like the adults
were) as we drifted dangerously without power, which would have made us
helpless if a storm blew in. When we reached land, again we started to eat
bread. I became obsessive compulsive. Years later, when I went off of
gluten, all the anxiety I experienced all my life disappeared within 3
weeks. This is a quick condensation of the story. (Despite this background I
graduated Magna Cum Laude from Trenton State College/the College of NJ)

Child # 2. Learning disabled/attention deficit. Did not learn to read until
10th grade in High School. Emotional problems. Obsessive compulsive. During
one illness she had schizophrenic symptoms and began to see herself walking
toward herself (out of body experiences) On GF diet, learned to read,
graduated Magna Cum Laude from College and no more emotional or
psychological problems or attention deficit problems

Child # 3 Daydreamed in school all the time. Was attention deficit, poor
grades.

Grandchild # 4. Had trouble in school concentrating. On GF diet ther was a
notable improvement seen by teacher in completion of work and concentration
levels. (Called home ask mother if she was doing anything different at home)
This child when he was 1 1/2 began to develop sleep apnea and needed a
monitor which went off all night when he stopped breathing. When he ate
bananas he would go "crazy" whirling and becoming very hyperactive. When
this connection was made between behavior and bananas, not only was the
behavior cured, but so was the sleep apnea.

Grandchild # 5 Was very young, asthma, would run around outside without
clothing, would not listen, seemed to be deaf, language delayed, severe
attention deficit/hyperactivity and would always eat non-edible things,
making him a favorite at the poison control center. Always sick. 40 doctor's
visits in one year. After going GF a age of 2 1/2, with one week he
immediately began to talk, began to respond when spoken to, could stay on
task and had only one well visit the next year and no more calls to poison
control. Now a healthy active normal GF child.

Grandchild # 6 Very hyperactive, especially when tired. Began whirling,
spinning, tumbling and all sorts of activity that had no direction or
purpose. Always sick in 2 week cycles. The doctors did not know what to do
with him. Often sullen and wanted to be alone, having difficulty with
overstimulation of too much activity. Went GF in Nov 2001. Did not have any
illness over the holiday season. His father did not believe that gluten was
the problem and bought him a pizza. He was in a storm of emotion within an
hour afterward and sick with an earache the next day. Now GF, (with parents
believing) and is doing exceptionally well at the age of 7.

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