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Shane's Mom

Autoimmune Polyglandular Syndrome 1 And Celiac

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My 17 yr old son was diagnosed w/aps1 in 1995 and has since been diagnosed w/ auotimmune hepatitis, hypoparathyroidism, hypocalcemia, kidney issues from calcium and now we believe he has Celiac's Disease. A few weeks ago, he was taken by ambulance for having a seizure, which is not part of his other medical issues. They weren't sure it was a seizure, but that's what wittnesses said. His calcium was low and they treated him for that. Low calcium is something we've dealt with many times, but he's since been in ER four times last week and admitted for four days, not absorbing the calcium. It's common with his syndrome to have malabsorbtion or Celiac's, but have never spoken with anyone else who has this combination. His magnesium and potassium were also very low. Anyone out there know anyone with this combination? I appreciate any help.

Kari

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Doesnt aps 1 include addisons? Addisons would affect the potassium levels.

Celiac is autoimmune and can occur with any of the aps (1, 2 or 3).

Our family is polyendocrine - kids are classed as aps 3

son - type 1 diabetes, celiac, lactose intolerant

daughter - hypothyroid, celiac, lactose intolerant, gilberts syndrome, Kawasaki (recovered)

Mom (me) - type 1 diabetes, hypothyroid, pernicous anemia.


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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