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Hi All,
I have a big problem. I would appreciate it if the list could put its
collective mind to the task of solving it.

I met a little girl, about 3 or 4  years old, a few weeks ago. She has the
most beautiful, intense, dark blue eyes you've ever seen. They are quite
disarming. She had been diagnosed as having a neuromuscular disorder, in
the city she and her folks just moved away from. They now live here in
Calgary.

The nature of her ailment is that she just seems to fall down several times
every hour. She doesn't seem to hurt herself. She just gets up again and
goes on about her business.

This little girl also has a pot belly, and flabby muscles. Her mom tells me
that her stools look the color of oatmeal, and they float.

While she seems petite, her mom is quite small too, so I wouldn't think
that her size is a very meaningful consideration.

Being more than a bit of a busybody, and a "gluten nut," I suggested to the
mom that she get her tested for celiac. I gave her the name of a local
pediatric gastro who has a high level of suspicion for cd.

So the mom took her to a pediatrician and asked for a referral to the gastro.

The pediatrition refused to refer the child because he didn't think the
child had celiac disease. (I know how stupid that is. I'm just reporting
the facts.) So this pediatrician gave her the diagnosis of cerebral palsy.

He is perfectly prepared to label this child with an untreatable, vague,
meaningless diagnosis that relegates her to a hopeless condition for the
rest of her life. But he wouldn't give her a referral to have cd investigated.

Now, the mom knows I'm no doctor. I'm amazed that she still has an open
mind about the possibility her daughter might have cd. But in our wonderful
Canadian health care system, getting a second opinion costs cash, and I
don't think they would pay to pursue the clinical suspicions of a High
School teacher.

Now I know that neuropathic celiac disease hits about 10% of us. (I happen
to be one of the lucky few who has experienced almost total remission of my
neuropathic symptoms.)  My reading indicates that this child may not be as
lucky as I have been, if she does have celiac disease with neuropathic
presentation. That means that every lost moment takes her closer to
permanent and possibly a progressive neurological disease.

The help I need is in trying to figure out how to get this little girl a
chance to be tested for celiac disease. I think the mom will go a little
further on this, but if one more quack rules out cd without knowing what
the devil it is, I think this little girl might live a life trapped inside
a body with an errant nervous system. (Of course, she could have cerebral
palsy. I understand that. I just want to see her have a chance at something
better.)

I need your help. I will put all the suggestions together, and take them to
the little girl's mom, and maybe we can figure something out.

Thank you all for taking the time to try to come up with some answers, and
for ploughing through this lengthy post.

Best Wishes,
Ron Hoggan