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janelyb

Doctor Won't Test My Older Child?

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My 3 yr old had a + anti-glidan IgG test (through GI) which I was told leaves him more as inconclusive as to whether he's celiac or not. So I ask the pediatrictian to test my other child and he said no let's wait. He says this because my older child has no GI symtoms, but hey wait I say she has severe excema.

What do I do????? Do you think our pedi GI will run the test for my older child (she isn't a patient of hers).


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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All first degree relatives should be tested upon a positive diagnosis. Our pediatric GI requisitioned tests for me, my husband and older son, I don't know why yours wouldn't.

Be sure to mention the severe eczema to the GI as an incentive for testing.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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It's quite common for first degree relatives to have asymptomatic celiac, at least I've noticed it time and again on this board. I think what happens is the one family member with the most obvious symptoms gets diagnosed first, and then if other family members get tested, they may find out they have celiac even though they had so little symptoms (or symptoms that aren't as typical) they never would have thought of testing for anything....

Pauliina

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which test was positive----the anti-gliadin or the Ttg----they are two separate tests.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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which test was positive----the anti-gliadin or the Ttg----they are two separate tests.

whoops that was the anti glidan IgG test that was positive.... TtG was neg


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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It's quite common for first degree relatives to have asymptomatic celiac, at least I've noticed it time and again on this board. I think what happens is the one family member with the most obvious symptoms gets diagnosed first, and then if other family members get tested, they may find out they have celiac even though they had so little symptoms (or symptoms that aren't as typical) they never would have thought of testing for anything....

Pauliina

I like what you said in reference to "if" other family members get tested because in reality it is not necessary to test anyone else once one person has a positive diagnosis either through testing or diet response. In my case I was the only member of my family to ever experience symptoms. I have a brother, sister and mother still living. My father is not and to my knowledge never had health issues that I could relate to Celiac. All of us are over 50 yrs old. That said upon my positive diagnosis I began to wonder what the next logical step would be for those other family members. The fact that I developed Celiac is important in that it exists in the family tree. Rather than test those members(brother or sister) for anything I knew if I could get it so could they. Anyone in this tree could simply start the diet on the onset of any Celiac symptoms and be done with it. I decided to test my mother only for the gene. I also got gene tested when I had my follow up anti-body test to see how I was doing on the diet. The only anti-body test I ever had was fine and I don't plan on doing it again. Both my mother and I had the DQ2 gene. This was important in that she comes from a large family and many of her brothers and sisters are still living and they have children. To me it makes no sense at all to anti-body test anyone who does not have symptoms. From what I have read those "with" symptoms in a lot of cases can't get a definitive answer. I notified relatives on both sides of the tree even though I did not know if my father had a gene or not. The only reason my brother or sister might test for the gene is because they have children and grandchildren. My wife and I do not. Once again testing may only rule out the possibility of developing Celiac if they do not have the gene. What is more important is once any family member is diagnosed or responds to the gluten-free diet then they should "notify" as many relatives as possible to make them aware of the existance of this in the family tree. I know most relatives don't want to hear this or will do anything if they start developing symptoms (mine didn't) but at least they will have more knowledge than I did. Testing is expensive and no more than one family member should have to go through the "complete" series (gene,anti-body,biopsy, and/or positive diet response). Based on a lot of the posts I have read this does not seem to be the favored approach. Why it is necessary to test every member over and over again with mixed results when the existance of Celiac is there is something I guess I will never understand. This approach does explain yet another reason why health care in the US is so high. As long as we keep putting the cart (expensive tests) in front of the horse (diet response) when it comes to Celiac then this will continue.

Tom

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i guess i don't quite agree with your thinking on this subject. my oldest son has more celiac symptoms than any of my children-----and he does not have celiac disease, his symptoms are caused by other problems. my youngest celiac child did not have a lot of obvious symptoms, we tested her because we knew the disease was genetic and her antibody levels were higher than our daughter with the most symptoms. i guess what i am saying is that from my experience, it is definitely important to test family members even if they don't have symptoms.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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My 3 yr old had a + anti-glidan IgG test (through GI) which I was told leaves him more as inconclusive as to whether he's celiac or not. So I ask the pediatrictian to test my other child and he said no let's wait. He says this because my older child has no GI symtoms, but hey wait I say she has severe excema.

What do I do????? Do you think our pedi GI will run the test for my older child (she isn't a patient of hers).

I had my older daughter tested because nicole was + and she also had no symptoms but here results were high. Normal is <4 and her;s were 32.

She also has had eczema but also has asthma too. but havn't seen the eczema in a while. They do say have all 1st degree relatives tested because they won't all have symptoms but still have the damage.

Celina


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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