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About Paige'sMom

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  1. My daughter who is 10 was diagnosed in May with Celiac Disease. I have been watching the forums and have not found anyone with the same circumstances, so decided to post my own to find out if there is anyone out there with the same circumstances. Paige had woken up 4 times within a 2 week period with stomach pain. She is a gymnast so I had put it off to muscles the first time. The second time the flu had gone through our household and thought it might be that. The third time, I started getting concerned that it might be her appendix. I told my husband that if it happened one more time that I was going to bring her to our pediatrician. The next night she had the same thing happen. I called the Dr. and was not able to get her in to our normal pediatrician, (who I trust my life with, he has diagnosed my older son, who is 17 with Graves' disease, my son, who is Paige's twin with water on his brain and spine when he was 1, which we had to travel back from 2 states away because I knew something was wrong and the pediatrician where we lived just said it was because he was a preemie. He's just wonderful). Anyway, we saw one of his partners and by the time we got in to the doctor, her symptoms had all passed, which they always had after a couple of hours. Now remember, she only had this 4 times in a 2 week period. He did some blood work and said that he was going to test her for Celiac Disease as he had just diagnosed another child that week after many, many tests. I really didn't know what he was talking about and didn't pay too much attention to what he was saying. I was just happy that it wasn't her appendix and thought it was just a fluke and she would be fine. Paige had no more episodes of stomach pains from the time I brought her in to see the dr. and the Sunday morning 3 weeks later when he called me at 8:30 am and scared me to death. He told me that Paige tested positive for Celiac Disease and to put her on a gluten free diet immediately. Of course I spent all day Sunday researching online and scaring myself to death over what my daughter had. We had already had a doctor's appointment set up that Monday with our normal pediatrician for 2 of our other children,and wanted to talk to him desperately to find out what this was and what we needed to do. We went to the doctor appointment and told him what his partner had told us. First off he told us to not take gluten away until we had a biopsy done to confirm the disease. I wish the first doctor would have told us that. I still rushed out after the doctor's appointment and bought every cookbook and book that I could find on Celiac Disease at Barnes and Nobles. We got set up 3 weeks later for her biopsy. They biopsied her esophagus, stomach, and small intestine. All this time, still not having any symptoms whatsoever, only those 4 instances of stomach pain in the middle of the night. The biopsy was very traumatic on Paige and myself. I hated to see her go through that, even though they were very good to all of us and she didn't feel a thing. The doctor came out to talk to us and told us that her pictures looked great but that the pathologist had to look at her slides and he would let us know the next day. He really got my hopes up. He called us the next evening and told me that she was positive for celiac disease. I realize that you can be asymptomatic and still have this, but it has been so hard. How do you tell a kid that they have to remove everything that they love from their diet? Paige has always been a picky eater and cereal and mac n cheese have been 2 things that she would eat. I realize that it's not a great diet, but she has never eaten much and to take away the few things that she will eat was very hard. Everything that I have read on how to get a child to not eat things that they aren't supposed to is to tell them that it will make them feel bad and get a tummy ache. Well how do you tell a kid who has never felt bad from eating gluten, that it's going to make her feel bad now? If anyone else is out there in the same situation, could you please respond? She cries a lot because she's not able to eat what the other kids are eating and she is at a stage of not wanting to feel different. We go back on July 17 to check her levels. I know that they say that you can't out grow Celiac, but could the pathologist have been wrong? Any help is appreciated.