Best Test To Diagnose An 11 Yr Old?

[Kimberly57]

Hi all,

First, I want to introduce myself. I'm Kimberly, mom to three, 11, 10 and 6. I live in Morgan Hill, CA. I was very recently diagnosed with celiac and have been happily symptom free since following a gluten-free diet. It took 9 years and countless tests to get diagnosed. I'm very grateful.

My every mom instinct and my heart tell me that my 11 yr old son has celiac. I would like to get a definite diagnosis for several reasons, but because of my many misdiagnoses and a reluctant pediatrician, I've been dragging my feet. I want to get the test that will best diagnose him. What should I ask for?

Thanks so much,

Kimberly

[happygirl]

Welcome to the board, Kimberly!

All of your first degree relatives, regardless of symptoms, should be tested. All children, siblings, and your parents.

"Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy." (taken from: Open Original Shared Link

If your pediatrician isn't willing to test your children, contact a local Celiac support group and ask for a recommendation from their members. Your children, regardless of symptoms, should definitely be tested.

The bloodwork they need done:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Some goods sites with info:

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiacdisease.net

[gfpaperdoll]

all you need is enterolab.com

Good for your mommy instincts...

[cyberprof]

Hi all,

First, I want to introduce myself. I'm Kimberly, mom to three, 11, 10 and 6. I live in Morgan Hill, CA. I was very recently diagnosed with celiac and have been happily symptom free since following a gluten-free diet. It took 9 years and countless tests to get diagnosed. I'm very grateful.

My every mom instinct and my heart tell me that my 11 yr old son has celiac. I would like to get a definite diagnosis for several reasons, but because of my many misdiagnoses and a reluctant pediatrician, I've been dragging my feet. I want to get the test that will best diagnose him. What should I ask for?

Thanks so much,

Kimberly

I just went through a similar process with my 14 yo son. (You can read it in my signature.) My bloodwork was negative and so was my son's. The blood tests are good at ruling IN celiac (e.g., if you have postitive bloodwork for gluten antibodies, then you definitely have celiac.) but are not definative in ruling it out. My feeling is that I did not have enough "damage" to my small intestine to show up in the blood work. My son, too. That's a good thing!

If you have the blood test and it's negative, you might be able to push for a referral to a GI doc based on your celiac diagnosis. Sometimes docs respond to things like Happygirl listed - like the Celiac Center @ Columbia's info. That's what we did. However, the GI offered to do an endoscopy on our son but my husband didn't like the risks, which are small but there nonetheless. It was the right decision for us but I honestly respect parents who have had the endoscopy done - you just have to be comfortable with your decision because it is your child. Certainly, if my son doesn't have some improvement soon we may do a 'scope to rule out other things. But he just went gluten free last week, after receiving the Enterolab results.

We decided to do Enterolab (paid out of pocket) because my son didn't want to go gluten free without "proof", and being a teenager it is hard to get teenagers to do something if they don't "believe" in it.

It was the best decision because we now know that he has one celiac and one gluten sensitive gene, which is why he is having lots of symptoms - mainly non-GI symptoms like growth failure. He has encouragement to stay gluten free and casein (Milk) free too.

All of my worry was based on "mother's instinct" and I am glad you are listening to yours.

Best of luck,

~Laura

[Puddy]

I have a question about testing children, also, although mine are much older....21 year old twins and 23 year old son. They are all without obvious symptoms, but then so was I. If the doctor does the blood tests for the IGA levels, etc. and they come out negative, do I request the gene test, also? I'd like them to know if they are carriers of the gene as I am. If they don't have the gene, am I correct in thinking that they don't have to worry about developing celiac disease later in life. I read that on another site somewhere. Thanks for your help.

[happygirl]

This may help: Open Original Shared Link

[Puddy]

This may help: Open Original Shared Link

Thanks so much, happygirl. That is exactly the same site I had read about it on, just couldn't remember where I saw it!

I'm printing it out to take to my doctor.

Thanks again.