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Hello Everyone,

I have written a few times about my 3 1/2 year old son and gotten many
replies on things to look for or test for so I thnak you.    I am not sure
where to start but things are still not going all that well for Ryan.  He
has Celiac and has been gluten free for 2 years.  He has been to a slew of
doctors and gotten many tests done and bloodwork but we still can not pin
point anything.

Here are his symptoms:
  He says his legs are tired from walking  (it seems worse when he is tired
or after al ot of exercise)
  Doesnt always like to climb stairs
  Hungry all the time
 Bruises easily

Don't get me wrong though he is an active little boy too-  he goes to soccer
class once a week and we play at the park a lot and he runs aroudn the
house.  But he complains a bit too much about his legs being tired and wants
me to carry him.  When this happens he is also irritable and very
sensitive.  He cries easily and soemtimes seems sensitive to be picking him
up by his arms and says that hurts.


His platlets were very low over christmas break and he was anemic after a
virus and the flu and was admitted to the hospital and also checked for
leukemia.  Since then he has been to the hematologist 3 times for checks and
his platelets are normal.  His hemoglobin is 10.4 and Hematocrit is 32.  His
SED rate has been elevated-  (between  40-70) but they say that can be high
when they have a virus or cold or sore throat  etc...  and he has had the
sniffles this winter.

At the time of admittance he also had a rash and hives and red streaks
remained for a few montsh which they called (dermatographai)

His vit D levels were normal.
Blood sugar is normal

We jsut saw the rheumatologist and he is doing   a few muscle protein
tests:  LDH (lactate dehydrogenase) and CPK (creatine kinase)
  I dont knwo much about that but jsut read al ittle bit about it.  Has
anyone experienced or had muscle diseases???  They are checking for lupus ,
myalgia/myositis,  ITP  and doing another CBC,  TSH,  free T4,  fibrinogen.

Ryan has also had a CT of his abdomen and pelvis and chest
and we saw an orthopedist and podiatrist.

Just wanted to gather more info and was wondering if anyone had any other
insight on what coudl be going on or what to test for or questiosn to ask
the doctor.

His diet is VERY restricted and I am keepign a food diary.  He is only  with
me  and still experiencing problems.  I have called all the companies from
the food that he eats to  confirm it is gluten free

Other history:  He did have a parasite in june 2007 and went on medicine and
further tests showed the parasite was gone.
 He had an endoscopy in sept 2007 and we see his GI doc regulary who we love
and specializes in Celiac Disease.

Thanks you for any advice/ comments.

Suzanne

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