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I am overwhelmed with the involved responses I have gotten from so many of
you regarding this issue and my son.  I will try to summarize what I have
gotten but everyone's story is a little varied.  So far, I have gotten about
25 responses from people, all saying that neuro problems and celiac go hand
in hand for them.

Some books that were recommended were Danna Korn's books "Wheat-Free,
Worry-Free:  The art of happy, healthy, gluten-free living." and "kids with
celiac diseases:  A Family guide to raising happy, healthy, gluten free
children."  She has great references in the back of her book as well as
discussing neuro problems in the text.  A couple of people referred me to
Dr.Alessio Fasano at the University of Maryland, whom I am definitely going
to write and explain Alec's symptoms.  We live in Texas, and do not seem to
be near any appropriately educated doctors on this issue.  Some people cited
medical references to studies and periodicals that tell of a connection
between the two illnesses.  The doctors Marion Rewers and Ed Hoffenberg at
University of Colorado children's Hospital were recommended as well.

The dx of CIDP was mentioned by one person, which is exactly what my son was
upgraded to after having his 3rd episode of not being able to walk a couple
of years ago...it is basically chronic Guillain Barre.

Many reported symptoms like my son's when they ingest gluten or have been an
untreated celiac for a long time; others couldn't link a known ingestion
with an episode of weakness or pain.  Many talked about having flares,
typical of other autoimmune illnesses and reported that he needs to take
care of his body during these times because triggers can be fatigue or
stress/not just gluten ingestion.  Some definitely got to the point of not
being able to walk and even needed PT or OT.  Some reported being sick with
an illness before symptoms began...being something of a trigger for the
flare.  I have found this to Definitely be true for my son.  He has always
been sick with some viral infection before a flare of not being able to
walk.  Further, it always happens in Jan/Feb of each year since we started
this problem!  Weird!  Further, it is always accompanied by night terrors.

A few reported having been tested/dx/ re-dx with GBS or MS, or a similar
type of illness but never very conclusively.  Neuro's typically seemed
stumped by the symptoms and lack of ability to dx properly.

Some had their symptoms subside once going on a GF diet, but then returned
sporadically after awhile even though still on the diet.

Many mentioned peripheral neuropathy as an official name for what my son is
going through.  A couple of people recommended I take my son to an
immunologist for testing or to a rheumotologist.  One recommended
supplements of CoQ10 to help his mitochondria regulate the oxidation of fats
and sugars into energy because maybe he has mitochondrial dysfunction.
Exercise tolerance tests were recommended by this person as well. A few
talked to me about high blood sugars causing the problems.  My son has an
A1C of 6.8 and is on an insulin pump...he typically does not have issues
with high blood sugar except when he is sick, which is typical for the type
1 diabetic, so I don't think that is where his problem is coming from but
rather a symptom of what is going on in his body during a flare.  A couple
of people recommended I have my son tested for other food allergies.  One
person recommended I have his B12 levels tested.

Overall, I felt encouraged to know others are dealing with the same issues
we are because, until yesterday, I had spoken with no-one who could find a
connection between these illnesses...and yes, I am including all of my son's
doctors in this group!  I am going to send a time line of my son's illnesses
and a brief letter explaining what is going on to him to all of the doctors
that were recommended to me to see if I can find out what I should be doing
for my son...whether that be tests/treatments/or just getting a referral to
a knowledgeable doctor closer to where we live.   I think my summary is a
bit scattered because like I said earlier, everyone's story is a bit
different and varied as to how they are treating their problems, their
duration, etc.   I didn't find many children out there but that is probably
because so many are just undiagnosed.  I am hoping to be part of the
education process for those families that will be searching soon for an
answer!

Again, thank you to all for your stories and I will continue to post
summaries of what I receive as I get them.  Carla

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