Celiac's Disease

[Guest guest]

Hello--

I don't know much about the diet stuff, am new to the site trying to learn for

my LT 3 year old. If anyone has any further info for June (below) I'm sure she

would really appreciate it. This is all very new and upsetting to her.

Thanks--

I’m writing to try and get the word out. I’m sending this letter to every

group list I’m on, because I feel like if I reach even one person who might not

have otherwise known about Celiac Disease, and they have themselves or their

child tested, It’s been worth my time.

My 5 year old son was recently diagnosed with Celiac’s Disease. However, he had

none of the outward symptoms one normally associates with it, such as IBS or

bowel or digestive problems.

What he did have was severe developmental delays and severely pitted teeth and

weak tooth enamel.

We went through all the normal pathways, hearing tests, neurology tests and

meetings with the neurologists at Strong Memorial, and no one could tell us what

was wrong. He wasn’t “on the spectrum.” He was affectionate, active, and loved

trains.

Up until age 3 we watched and waited thinking he was just a “late talker.” When

he did finally start talking, we knew something was wrong. Even at 5 he is about

2 years behind his peers. We had almost resiged ourselves to the fact that he

was simply mentally retarded, and no one could tell us why.

We eat organic, use no chemical cleaners, and other than having some moderately

high blood pressure during my pregnancy with him, we couldn’t find any other

causes. We also didn’t vaccinate until he was 18 months old and then only the

DTAP. I nursed him until he was 18 months old.

Two weeks ago he had to go in under general anesthesia for extensive dental work

because of the weak tooth enamel. I asked our pediatrician at his pre-op exam to

run a complete panel of bloodwork, just to see if anything came up that might

give us a clue to his delays. What a gift and a godsend. He was off the charts

for gluten intolerance and all other aspects for Celiac’s as well as other food

intolerance’s that our pediatrician felt was related to the Celiac’s disease.

In short, his brain and his body have been starving for over 3 years since he

stopped getting what nutrients he could from easily digested breastmilk. Even

though he ate well, healthily and plenty, his body was not absorbing the

nutrients from the food and supplements we were giving him.

Celiac’s affects how vitamins and minerals are absorbed through the small

intestines. Your body basically attacks itself in an effort to attack the

gluten. Our doctor said for him, gluten is essentially poison.

So, we are now a gluten free home and the rest of my children and my husband and

myself will also be tested. It is genetic and can lay dormant or undetected in

families.

I’m sending this out there, because for those of you who have or know of

children with some of these symptoms who might otherwise not make the

connection, it’s worth the simple blood test. I only hope for us, during these

very important formative early “brain” years, that the damage done to his brain

isn’t going to be lifelong.

If anyone would like to contact me or ask questions, you can do so directly at

blessdbartos.

Thank you for listening.

Sincerely,

June

What the mother signs to the cradle goes all the way down to the coffin. - Henry

Ward Beecher

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