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I'm Celiac... What To Have Son Tested For?


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4 replies to this topic

#1 seattlejoy

 
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Posted 07 May 2012 - 12:24 PM

I just found out last week that I have Celiac Disease. I am taking my son into the Doctor here shortly to get him tested. I am afraid that the doctor will not run all the tests necessary though. I would take my son to my Naturopath but she is booked out weeks and I am impatient to know.


Is it reasonable for me to demand a test for the gene? If so, what is that test called?


The appointment is in an hour so whoever can respond by then, it would be appreciated. Otherwise, the info is still good to have.
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#2 beachbirdie

 
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Posted 07 May 2012 - 04:46 PM

I just found out last week that I have Celiac Disease. I am taking my son into the Doctor here shortly to get him tested. I am afraid that the doctor will not run all the tests necessary though. I would take my son to my Naturopath but she is booked out weeks and I am impatient to know.


Is it reasonable for me to demand a test for the gene? If so, what is that test called?


The appointment is in an hour so whoever can respond by then, it would be appreciated. Otherwise, the info is still good to have.


How did your appointment go?

Sorry you did not get the answers you hoped for before you had to go.

It is certainly reasonable to ask for the genetic test, you just ask for genetic testing for celiac. The genetic test does not diagnose the disease, simply shows whether a person has the tendency towards it or not. The majority of people with the gene don't get the disease.

How old is your son? Some of the testing won't necessarily be accurate if your son is very young. Is your son having symptoms?
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#3 Lisa

 
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Posted 07 May 2012 - 05:02 PM

So sorry we missed your window.

You must be referring to the DQ2 DQ8 gene test. It is not conclusive. Only thirty percent of the people who carry the genes (associated, but not limited too), will go on to develop Celiac.

Many people can use the gene testing as a piece of the puzzle, when a true diagnosis has escaped them. And adding that with dietary results, many people here quite comfortable with a self diagnosis.

Hope you got good news.
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 seattlejoy

 
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Posted 07 May 2012 - 05:09 PM

How did your appointment go?

Sorry you did not get the answers you hoped for before you had to go.

It is certainly reasonable to ask for the genetic test, you just ask for genetic testing for celiac. The genetic test does not diagnose the disease, simply shows whether a person has the tendency towards it or not. The majority of people with the gene don't get the disease.

How old is your son? Some of the testing won't necessarily be accurate if your son is very young. Is your son having symptoms?



Thanks for asking. The Dr. wouldn't run the genetic test. He ordered the TTG and the Endomysial AB with reflex to titer and said that if my son (16 yrs old) has Celiac, that will come back positive. I tried to argue that my research showed that someone can test negative and if they carry the gene, it can be "activated" by a stressful event or virus later in life and I want to know if that is a possibility for him. The Dr. said NO, he either has it or he doesn't and the test will tell. If it is positive, he will then send my son for an endoscopy.

My son has 3 bowel movements a day and says they are normal. He is pretty fatigued and has lost 20 lbs this last year. For the month of January we went off bread products and dairy and all of a sudden my kid is getting up refreshed in the morning and making it to school on time. But that isn't enough for him to make the decision for himself to go off gluten or dairy. It's too tempting. It will take a Celiac diagnosis.
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#5 Lisa

 
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Posted 07 May 2012 - 05:21 PM

I tried to argue that my research showed that someone can test negative and if they carry the gene, it can be "activated" by a stressful event or virus later in life and I want to know if that is a possibility for him. The Dr. said NO, he either has it or he doesn't and the test will tell.


Hopefully, he meant that Celiac is either active or it's not. But the predisposition can exist, without being activated, in 30% of the people who possess the DQ2 and DQ8. As you know, it can react to a trigger of some sort.

You have done your homework. :D
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien




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