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Zsuzsanna

New, With Questions, Comments....dd (Age 6) Tested +

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This is such an interesting website, and feel lucky to have found it. I never thought I'd be on a celiac journey, but looks like one has begun.

My dd is 6 1/2 years old and I took her to the doctors in January for some behavioral issues. (side note: She was complaining of being hungry during school; which led to some behavior struggles at home. Truly I was just going to secure a note allowing an a.m. snack.) Anyhow the ped ordered a celiac test; which when she called me with the results said my daughter's number was 22. Anything over 15 was viewed as celiac. There were three different letter names screened; which I'm still trying to figure out and understand.

My son's 'number' came back as .16

Husband and my doctor's ordered a 'celiac panel' for us; which I found out is a more thorough exam. Our 'number' came back as less than 3, so we are negative as well.

Am I correct that the panel is more for adults and for young kids the 3 different letter names are enough?

We meet with a pediatric GI february 6; which should result in a biopsy.

Any comments or 'yup that sounds right' feedback would be appreciated. I'm feeling a bit frustrated with extended family's reluctance to get tested. for one it's because he has to pay up front at the doctors, for another it's because she feels guilty that it might have come from her.....I'm still working on the 'you can take a horse to the water, but can't make them drink theory'

thanks again.

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Celiac.com Sponsor (A8):

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the 3 different letter names, were they :

ttg

AGA

EMA

DGP ?


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Hi and welcome. The first thing to do is get a copy of your kids' medical charts with labs! If you post the labs there will be lots of folks here who understand them.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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I have the info regarding the testing and results. Any feedback is appreciated.

My daughter, age 6 1/2

tTG Ab, IgA = 22.4 (reference is 0-15)

IgA Total = 89 (reference is 39-239)

My son, age 11

tTG Ab, IgA = 0.6 (reference 0-15)

IgA Total = 99 (reference 54-280)

My husband (his results were more wordy)

Transglutaminase IgA Autoantibodies = <3.0 (reference is <4.0)

Reticulin Ab (IgA) = 'negative'

Endomysial Ab (IgA) = 'negative'

Gliadin Antibody (IgG) = <3 (reference is <11)

Gliadin Antibody (IgA) = <3 (reference is <11)

Not that I was hoping others in our family would have it, but I really thought one of us would be positive, especially husband. Does his test seem pretty thorough?

It's funny how I'm seeking to trust other posters than call the doctors. Sometimes those that are in the trenches are more help. Thanks again!

Z

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We have a lot more free time to learn specifically about celiac. Your doctor has over 500 diseases to keep track of!

Your son has the only positive test. Yes, your husband's panel is pretty thorough. Remember that it's kind of hard to get a positive celiac test. It's still possible to have issues with gluten, and even damage on endoscopy, with negative tests. The blood testing only catches maybe 75% of the people with celiac disease, and someone with non-celiac gluten intolerance typically has no positive blood tests at all.

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We have a lot more free time to learn specifically about celiac. Your doctor has over 500 diseases to keep track of!

Your son has the only positive test. Yes, your husband's panel is pretty thorough. Remember that it's kind of hard to get a positive celiac test. It's still possible to have issues with gluten, and even damage on endoscopy, with negative tests. The blood testing only catches maybe 75% of the people with celiac disease, and someone with non-celiac gluten intolerance typically has no positive blood tests at all.

Thanks for your feedback! You mean my daughter is the positive. My son is 0.6

You included some interesting facts, I appreciate that. February 6 is the GI appt, hopefully we will be scheduling the biopsy soon after.

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