Posted 17 October 2004 - 06:05 PM
I am new to the forum. My daughter is in the process of being diagnosed with celiac disease. We have had the blood screening which came back positive and are in the process of being referred to a specialist at Children's Hospital in Los Angeles. She has had other blood and stool tests which have all come back normal. After months of doing massive amounts of laundry after the blood was drawn and the stool was sent we started on a gluten-free diet. We saw an immediate change, lets just say I haven't had to change the sheets other then the normal cleaning day stuff. I know we should have waited for the confirmed diagnosis but I just couldn't keep feeding her stuff I thought was making her sick. So, anyway, I am looking for information regarding th reasons for and against a biopsy. I really don't want to put her back on gluten. She is doing better in kindergarten, she is gaining weight and seems much less fatigued. There will have to be very compelling reasons for me to put her on gluten for a month to do the test. So anyway, this forum is great, I have been looking up things constantly. Thanks for all your help and have a great night.
Posted 17 October 2004 - 10:09 PM
Let me know how the doctors are at the Hospital in LA. My primary care doctor said he would argue it out with the insurance if I wanted to try to get us to better specialists to get a diagnosis. We are in Fresno and LA was one of the places mentioned, also Stanford and San Fransisco. I opted to do nothing for now, since it would require us to go back on gluten to have more testing. And that is out of the question for me and my kids!
Mariann, gluten intolerant and mother of 3 gluten intolerant children
Posted 18 October 2004 - 07:43 AM
I will let you know regarding the Dr.'s and Childrens once we get in there. I agree that it seems pretty horrible to put her back on gluten to get a diagnosis when everything else points to celiac. The only reason I would consider it is if there is some other really life threatening thing that the biopsy would rule out and it was the only way to diagnose that. I can't imagine that would be the case, so we shall see. Every other blood test has come back in the range of normal. We just had a blood screening done to check out other things prior to the Celiac screening and Enzyme level blood test so we have covered a lot of ground. We are very hospital savvy as my daughter has had other medical issues not related to Celiac Disease so we are not awed by Dr.'s and such so if we are impressed with Dr. Pietzak(she is the specialist we are being referred to) I will let you know. I did see her name mentioned in a couple posts regarding conferences and studies. Anyway, thank you so much for the response and take care.
Posted 18 October 2004 - 08:07 AM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users