remeber katarah, undiagnosed two year old

[sarahjo]

Hi it has been a long time since we have been on, we have missed you all.
katarah is a 2 year old with a feeding tube, and many minor problems. well anyways we found out she is allergic to milk. so the gastro. wanted us to start a regular diet, minus milk ingredients. that was 6 months ago. she has only gained 2 pounds, been hosp. 2 times.(I am shaking as I write because I am so frusterated) she has only been HEALTHY for 2 DAYS, thursday I called the doctor and said she was going gluten free again because I can't handle watching her in distress anymore. The doctor did the gene test and she does carry the gene to possibly develop celiac, but he wants to do the biopsy. I go in on monday to see him and i can't sleep, and I am lost. a mother can only cry so much..please help

[paw]

I am so sorry your child has to go through this. I hope the testing is done soon and you know if your should go gluten free. IF that is the problem, Katarah can start to get healthy and gain weight and grow.
_________________
Dairy free 7-2004
Gluten free 10-2005
female

[sarahjo]

we put her back on gluten today, there is a chance she will have a biopsy this week, how accurate are they? how many do they do on small children? will it happen again?

[sarahjo]

we went to the doctor today. he agreed to start her on a GFCF diet. i think he is waiting for no change, i know that there will be a tremedous change. we also found out that she has the begining of ashtma, sleep apnea (mabey), iron defiecieny, and her tonsils and adnoids have to be remove, they are physically to large. he believes that this is the answer, i don't disagree that we now have these things, but i believe that they are from gluten and casien also, anyone else experience these?

[sarahjo]

I was hoping someone could give me some advice, I wondered if her problems happen with anyone else? if not that is ok, just wondering. thanks