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2kids4me

Pas Type 3

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Well i finally got the results back on my daughter ...they did genetic tests in June.

HLA-DRB1 *04 and DQB1*302. Statement by geneticist: HLA subtyping shows that she does have 2 subtypes associated with Type III polyglandular autoimmune syndrome. Of course HLA typing is not diagnostic for this condition but does lend support to the diagnosis...they go on to say that she is at increased risk for Addison disease even though it is not part of type III - she can convert ot type II if it develops.

My understanding is that she is at risk for more autoimmune illness and it may explain why low dose aspirin keeps her feeleing well - although lately she always says her "glands hurt" and her mouth is dry....the "glands" she says hurt - are her salivary glands....sigh

More trips to pediatrician..

She is only 15 but already as seen more doctors than most 60 yr olds!!


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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Sandy are they using this finding to tell you she can't have celiac and that she doesn't need the diet? Her gene is real close to one of the ones I carry. Has she gone gluten free yet? Has it helped any?

DQBI*0302 is a recognized celiac gene in Europe, I wonder if they are talking about the same gene but just with an extra 0? This is an excerpt from the following link:

http://www.sciencedirect.com/science?_ob=A...bc1f722b3d8f0c5

"Genetic susceptibility to celiac disease is strongly associated with HLA-DQA1*05-DQB1*02 (DQ2) and HLA-DQA1*03-DQB1*0302 (DQ8)"


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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No, they know she is celiac - she was confirmed celiac by endoscopy and has been gluten free since. This test was to confirm suspicion of susceptibility to a specific cluster of autoimmune diseases known as PAS III. This way, if she were to have vague ongoing symtpoms that do not point to a specific illness - there would be certain diseases they would test for.....that would not normally be checked in a teenager / young woman.

from : http://www.emedicine.com/med/TOPIC1869.HTM

PAS III can be further classified into the following 3 subcategories:

PAS IIIA - Autoimmune thyroiditis with immune-mediated diabetes (IMD) mellitus (type 1 diabetes mellitus)

PAS IIIB - Autoimmune thyroiditis with PA

PAS IIIC - Autoimmune thyroiditis with vitiligo and/or alopecia and/or other organ-specific autoimmune disease

PAS III is associated with the following diseases:

Organ-specific autoimmune diseases

Celiac disease

Hypogonadism

Myasthenia gravis

Organ nonspecific or systemic autoimmune diseases

Sarcoidosis

Sj


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

Share this post


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Share on other sites
No, they know she is celiac - she was confirmed celiac by endoscopy and has been gluten free since. This test was to confirm suspicion of susceptibility to a specific cluster of autoimmune diseases known as PAS III. This way, if she were to have vague ongoing symtpoms that do not point to a specific illness - there would be certain diseases they would test for.....that would not normally be checked in a teenager / toung woman.

from : http://www.emedicine.com/med/TOPIC1869.HTM

Thanks for posting that link, it looks like something I will find interesting to delve into further. I do so love researching stuff. :D

It sounds like she has a good group of doctors that are being proactive and thorough that is a good thing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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