Every mother has a story and this story began May 5th, 2002 at 9:51
P.M.
After a long
hard day of labor, I held in my arms for the first time, the most beautiful
baby girl that I had ever laid eyes on. She was perfect in every way, with
gorgeous blue eyes and shiny black hair that would later turn to blond. The
minute that I held her I realized that I was holding a miracle sent straight
from God.
Life changed
from that moment on. I now had this precious little person to care for. I
was on a mission and I still am, to keep her safe and healthy. It is
natural for us as moms to try to teach our children all that we can. Our
values and a sense of right and wrong are a part of parenting that keeps us
striving to have our children grow-up with all that we believe to be the
best in life. We want our children’s lives to be better than ours.
In our case
there was dance, gymnastics and pony school along with the very best private
school and whatever I could offer in the way of instruction at home. Other
than a few nagging little problems, I thought of our lives at the time, as
ideal. My daughter was a healthy baby girl, she had developed in a normal way (or
so it appeared). She walked, talked and potty trained the way she was
supposed to, maybe even a little bit early. She was given regular medical
checkups and at first, all seemed right.
We breast fed
and at about 2 months old she began to get her first two bottom teeth. The
teeth looked good, grew in normally and were adorable. About that same time
I would try giving her formula and it was not something that agreed with her
system as she would get sick from it.
I mentioned
the teething and that for the first several months her teeth looked normal.
It was around ten months of age that I noticed that pieces of the enamel
(outer coating) of her teeth were beginning to break off. This was very
disconcerting and we took her to the Dentist, then several Dentists before
we found one that came up with a plan to help her teeth, as they were
literally crumbling out of her mouth.
The plan was
to grind down the teeth and put caps or veneers on them. This seemed like a
workable plan and we went ahead with it, all the while wondering what was
causing this very alarming condition.
I remember at
the time being told that the condition was caused by the teeth not fully
developing in the first trimester. I was then told
that the condition was seen occasionally and wasn’t as uncommon as
one might think. The Dentist also asked
about sugar consumption, alluding to this as a remotely possible cause. It
didn’t matter how much she brushed or what the sugar intake was, each dental
visit would bring several cavities and further visible deterioration of her
teeth. It was distressing and there was no controlling it.
I accepted
the situation and worked through it, although it left more questions than
not and in the back of my mind there was this constant fear that there
were more problems ahead.
When I look
back, the breast feeding and the way her diet developed would turn out to be
the most important clue on our way to solving this. My daughter breast fed
until three years of age and all through the development of her digestive
system, she really never had what could be considered a
normal bowel movement. When trying to
wean her from breast milk to solid food, she would complain of severe tummy
pain. She went from diarrhea any time she received breast milk, right to
chronic constipation whenever she ate whole food.
It was very embarrassing for her as she didn’t know if there would be an
explosion or very severe pain from her bowels not being able to move food
through.
Trips to the
Doctor over this were the most frustrating as they usually ended with me
being criticized as a mom for not feeding her a proper diet. We sought the
opinion of several Doctors and there was blood work, ultrasounds, medication
and special diets. Each visit would end with a piece of paper that
contained a diet and instructions to give a fiber laxative daily…oh and also
the admonition from the Doc that “you’re not feeding her a proper diet”.
This was just the guilt trip that I didn’t need and only added to the
problem. Other symptoms appeared that I only recently discovered were
clues. There was separation anxiety. She
just didn’t want to be with other kids and would not interact unless I was
around. I think this had to do with her nagging fear that she could have an
embarrassing episode. She also had much shorter bursts of energy than other
kids and that was followed by longer periods of just wanting to cling to
mom. There were mouth sores and little skin
eruptions that did not seem to be normal for such a beautiful little girl.
She had gone from explosions as a baby on breast milk, to no bowel movement
for a week, to now no bowel movement for up to two and a half weeks and a
very hard and somewhat
distended little tummy. She had a constant urge to urinate but couldn’t
because of the pressure. She would go into the bathroom sometimes once every
five minutes only to come out frustrated that nothing would happen. I was
frightened and I prayed for relief, because I knew that my beautiful little
girl was in trouble and I felt truly helpless.
A
breakthrough occurred at the beginning of first grade. I was driving a
carpool for the kids in the area and we were talking about what the kids had
in their lunches that day. A little boy mentioned that he had a sandwich
made with special bread. I asked him why his bread was special and he said
that it was gluten free. I asked him why he had that kind of bread and he
said that regular bread made his tummy hurt. This led to me talking with
his mother and the breakthrough began. I listed all of the problems that my
daughter had and these were things that the little boy had been through or
his mother had read about during her research into his problems. The boy
had severe Gluten Intolerance!
Now I had
something to work with and I got very busy right away. I began to do
research on the web and in the library. I read about countless cases of
parents that were trying to figure out what was wrong with their children
and a whole range of symptoms, that I had a hard time believing could come
from one source. I called the Doctor and although she was skeptical, she
agreed to do a blood test. The blood test came back negative. According to
the Doctor, my daughter didn’t have gluten sensitivity because it didn’t
show up in the “Gold Standard”, which was the defining test for Celiac
Disease. She actually seemed annoyed when I insisted that my research had
shown that there was no doubt about the source of her problems anymore.
I believed that she was Gluten Intolerent!
After a
negative experience with the Doctor, I again began talking with the little
boy’s mom. We were beginning to become friends as the shared stories about
our children were binding us together. She told me about Entero Laboratory in
Texas that would receive stool samples from
individuals and that they would test for gluten intolerance and do
genetic tests to determine the source of the
problem. Later I found out that it is only in the severest cases and after
the damage is done, that blood tests are effective. So I sent in samples
for my daughter and because of the genetic results of her test,
eventually myself and my husband were also tested. Those results indicated
that we too were Gluten Intolerant.
We found out
the following: My daughter had sever gluten intolerance and this is how part
of her test read…”
Intestinal antigliadin IgA antibody was elevated, indicating that you have
active dietary gluten sensitivity. For optimal health, resolution of
symptoms (if you have them), and prevention of small intestinal damage and
malnutrition, osteoporosis, and damage to
other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other
glands, skin, liver, spleen, among others), it is recommended that you
follow a strict and permanent gluten free diet.
As gluten sensitivity is a genetic syndrome,
you may want to have your relatives screened as well”.
