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Member Since 30 Jan 2004
Offline Last Active Feb 05 2004 08:46 PM

Posts I've Made

In Topic: Uncertainty..

05 February 2004 - 07:25 AM

Thanks so much for your help guys. It confirms what I have been saying all along. I am going to go get some pediasure today. I dont think she will drink it but it is worth a try I guess. Is the vanilla flavor gluten free? I thought I read somewhere it wasnt. I was thinking that may be the one she would actually drink...she is so adamant when she doesnt want her bottles or cup!
I really think this is the flu. She has had fevers and all that. But it sure doesnt help in the weight department. I talked to someone from WIC who is going to be coming to the house with a scale once a week to monitor her weight. Yesterday her dietician asked if anyone's asked us yet to do hospitalization to get some IV stuff in her. Not yet, but I am preparing myself.
We are still discussing the biopsy. we have an appointment with a new doctor on Feb. 16.

In Topic: Uncertainty..

04 February 2004 - 01:16 PM

Thanks guys for your responses. Well we have had an interesting turn of events over the weekend. It turns out the IGg and IGa were extremely high (almost triple the maximum normal numbers) but the EMA (most specific for celiac) was negative. I had not been aware of this. So maybe we have her gluten-free for no reason. She has lost 8 oz. since being gluten-free(2 1/2 weeks) and is only 17 pounds so thats alot. The doc says there is def a problem with her most likely a GI problem, but may not be celiac. SO I am back to square one. She goes to see yet another GI in a month (wish it could be sooner). Right now she has the flu and we cant get a bottle down her to save our lives. I think she is done with it anyway (15 months) but will not take a cup of milk (soy or lactose free). She used to take bottles of soy milk really well. We are trying everything to no avail. They are pushing the endoscopy hard. I am almost thinking we are going to have to do it. What would you do if it was your child? I dont want to put her through anything else she has already had so many tests. She has to have one now for cystic fibrosis, and then I guess we will see what to do next. One other thing, I am 35 weeks pregnant and also have a 3 y/o! NO stress at all! :wacko:

In Topic: Tons Of Questions

04 February 2004 - 01:08 PM

Exactly what were they testing for? Did they do IGg and IGa, and EMA? If so those numbers are pretty low for being celiac. That is what my daughter had done and her numbers were 131, 133, and negative. Thats the normal celiac panel as far as I know. Did your doctor mention doing an endoscopy? I am kind of in the same boat as far as not really understanding. My 15 month old daughter weighs 17 pounds 14 oz. as of today and they think she may have celiac but they are really pushing the endoscopy which makes me quite nervous. She is so little and frail and has been through so much. It has been 2 1/2 weeks since we got the results back stating she was positive for celiac and started the gluten free diet. There is definately something worng, but dont know if it is celiac or something else. She has a test for cystic fibrosis coming up. I guess we will wait on results from that before we decide on the endoscopy. We are also getting a second opinion. This is all so hard and taxing on you. May God bless you.

In Topic: Pediatlyte Okay?

04 February 2004 - 12:55 PM

Pedialyte is gluten free. It is on the celiac.com website under "mainstream products that are gluten free...medications and medicines."

My little girl (15 mos) has the flu too. We have been giving it to her.

In Topic: Confused...please Help!

04 February 2004 - 07:03 AM

Hello, as far as I know the soy milk we are giving her is gluten free. I know that rice and soy dream are though. I will call the company(SunSoy) today. I dont know about Pediasure. She wont drink soy formula...we just tried yesterday. She is very particular about her bottles and sometimes we have to sneak it in in her sleep. It is either that or she doesnt drink anything except water or maybe a little juice. This has been going on since 7 months, when I had to stop nursing.
She was throwing up everything last night. We finally got some Pedialyte in her and she hasnt thrown up yet today. I think its just a flu bug (phew). She goes in this morning to get her weight checked due to the throwing up and how little she is to begin with. Last night we gave her Pedialyte in her botlle nad now she will not even drink soy milk out of it. Uhoh. Anyway I think the milk even lactose free does bother her but I am willing to try anything at this point. Maybe Pediasure will work. I will ask her doctor today.
About the biopsy we are still discussing it. One of her docs wants to do the test for cystic fibrosis. That really kind of freaks me out. Well I gotta go, she needs me. Thanks for all your help and God bless. Becca

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