Need Recovery Help Please.

[Zsuzsanna 0]

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.

[nora_n 60]

the 3 different letter names, were they :

ttg

AGA

EMA

DGP ?

[domesticactivist 109]

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.

[Skylark 938]

This might help you understand the tests a little better.

http://americanceliac.org/celiac-disease/diagnosis/

[Zsuzsanna 0]

Great advice....I was already contemplating getting copies of the results before the GI appt. Will get them this week and re-post.

-Z

[Zsuzsanna 0]

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

[Skylark 938]

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.

[Zsuzsanna 0]

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.