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debbie_doodles

Member Since 28 Apr 2005
Offline Last Active Jun 16 2008 10:41 AM
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Topics I've Started

Incorrect Diagnosis? Not Celiac?

16 June 2008 - 10:41 AM

Hi there. Little bit of background: My daughter is now 5 and a half years old. She was diagnosed at 2 years old. I have been wondering about her diagnosis all along...thinking it might have been incorrect, but have had her gluten free for 3 and a half years. Her symptoms were poor sleep, lots of vomit, and diahrea and irritability. After lots of testing, her bloodwork came back negative (which could happen in a 2year old right?), but the doctor said she tested positive for both of the genes that carry celiac. My husband was tested and only has one gene...but he has aunts and grandparents that have wheat problems too. My daughter had endoscopies done and biopsys. The doctor said they were positive for celiac, but didn't elaborate. He said he was unsure himself if it was celiac or cows milk allergy or something. So we went gluten free. However, at the exact same time my daughter was being test for acid reflux. Which we knew she had pretty bad due to the projectile vomiting. She was put on pills for it, and every time we took her off of them, or lowered her dose, she'd start throwing up and get cranky. So she stayed on them until just under a year ago at which time we took her off of them and she seems fine. Her GI wanted to do a "gluten challenge" on her because he just wasn't 100% sure she had celiac. He said he was 99% sure. I told him to forget it, and haven't been back since then since she had improved. However....now its 3 years later and I'm still questioning if she does have it. The acid reflux has cleared up, so how do I know it wasn't just causing all the issues? And heres the big thing...about a month ago I bought her some new vitamins and gave her one---THEN checked the bottle (I know, big no-no). They had wheat in them. I completely panicked....but NOTHING happened. So if she has celiac disease, wouldn't she have reacted to the vitamins? So then we hid them, but she found the a few nights ago and took 2 or 3 of them. STILL no reaction. Should I do my own little gluten challenge on her and give her just one thing to see if she reacts? What exactly does the biopsy tell the doctor? he never explained to me how he came up with celiac disease. And all the vomit stopped after she got on her acid reflux pills. Any ideas or thoughts? I REALLY REALLY don't want her to have to live gluten free (at her age it has been SO hard...all the birthday parties and pizza, etc) if she doesn't have to. please help.
debbie in Arizona

Universal (cali) & Knotts Berry Farm

19 August 2007 - 05:37 PM

Last year for my daughter's birthday we took her to Disneyland and had a great experience with food options for her. Does anyone have any ideas about things/places she can eat in Universal Studios in Hollywood and at Knotts Berry Farm? Any info at all or anyone I can contact will be of great help! Thanks!!