[BULK] Re: RE How do I do this?

[Guest guest]

,

My daughter was diagosed with a kidney/liver disease called

ARPKD,which also causes enlarged kidneys, when she came up with a

uti at just under 2yrs old... She didn't have the reflux. Thank

goodness those antibiotics are so rough. ARPKD also affects growth

and since my son is GFCF my dd is also on the diet. Hope it helps

her since the disease is so rare that there is no research and no

cure. She's doing great though very healthy acting 3yo and she's

not even on any meds oh and she's growing really well too. want to

learn more www.arpkd.org. L

>

> ,

>

> My daughter was born with an enlarged kidney and was later to also

have

> bladder reflux. She was put on antibiotics at 2 weeks and was on

and off of

> them for over 14 months. At one point the doctor had her on 1 1/2

teaspoons

> of one antibiotic that I later found was 3 times what she should

have been

> on. She had ot go back on the antibiotics again off and on again

until she

> was about 2. She was sick her first winter everytime we turned

around but

> then in the summer she improved. Then again the next winter she

got sick

> again. Finally the doctor took some blood test and told us he was

80% sure

> she had Celiac. But when the specialist saw us he suggested we

readdress it

> down the road. At that point we had a quick introduction to the

diet but I

> did not know at that time it would mean doing a gluten challenge

or we would

> have pushed for a solid diagnosis then. She has not been sick

like she was

> but she still is just under 30 pounds at 4 so the weight has not

improved

> greatly. She is back on the growth chart again but she is so

little. I am

> hoping the new doctor has some insight for us.

>

> No one in the family has had a diagnosis of Celiac other than her

but my

> husband had allergies to wheat, rye, and barley so I guess my

question is

> can this be an allergy instead of Celiac or could she have gluten

> intolerance that is not Celiac? I guess I am just wanting more

answers

> since the first guy left so many unanswered questions.

>

> Thanks for your input.

>

>

>

> SPRING IS HERE!

>