Daughter diagosed with EG and EE

[Atismom]

I was wondering if anyone could possibly give me any suggestions on what do do next. My 6 year old daughter has finally gotten a diagnoses of eosinophilic gastroenteris and eosinophilic esophogitis. She has been vomiting since the day she was born. Being a military family and living overseas we didn't always have specialists at our disposal and thus that has delayed her getting a correct diagnoses well that along with the stupidity of some doctors who actually believed that as an infant she was making herself vomit. My daughter is a little bit unique in the EG and EE aspect..her triggers for vomiting are sweet foods (any high fructose/sucrose). She has never been able to eat any type of fruit or anything remotely sweet this is to include drinks. All she drinks are water and milk. Her eosinophils were over 40 when they did the biopsy. She has to go in for another one in about a week. She eats regular foods but we do a lot of substitutes for her. She hasn't had fruit in over 4 years now. We just want to know how to deal with her diagnoses in the long run. We were told by one doctor that if she eats anything that she is "allergic" to then after time if she keeps eating it it will cause a build up in her colon and she will need a colonoscopy. My question is everything has sugar in it...even if it is a small amount. Am I hurting my child by letting her eat regular food even if she isn't vomiting it up?? Will it still build in her colon?? I haven't found anyone who can answer this question. My daughter can't do the predisone as sugar is her trigger and alot of people don't consider the syruppy medications for children. Her eosinophils start in the back of her throat and as soon as a liquid medication hits the back of her throat she starts gagging as her eosinophils are reacting. It's just horrible.  As I stated she is 6 and a very happy little girl...hopefully we can get some answers.

[Atismom]

I also must let you know she has had a skin ***** test and a patch test done. She had a reaction to rye, potatoes, rice flour,and corn. We had no clue she was "allergic" to these foods as she loves potatoes. Never had a physical reaction to them. She also had a rast test done to milk and low and behold test confirmed she was allergic to milk. I refused to take her mild away as she can only drink milk and water and she needs all the vitamins she can get since she can't eat any fruit...Not just going to let her live on water. She has also been tested for Cealic disease and that came back negative. So yeah at this point I am not sure of where to turn next. One doc recommended puting in a GI tube and putting her on Neocate. That would be great...if she wasn't 6 and going to school and loving life. My daughter loves the food she can eat. I can't just take it away like that. At my wits end here.

[Jaybay]

I really don't understand a doctor telling you that fruit (or anything else) can build up in the colon.  As long as your daughter is eliminating regularly, anything that is in the colon will pass through.  

At this point, I think you know your daughter better than anyone.  Avoid foods that you know cause problems, and keep up with vitamin supplements in case she's missing any nutrients.

I would really hesitate to do something so invasive as a GI tube when your daughter appears to be otherwise healthy and enjoying life.  Wish I could help here - obviously something odd is going on but I have no idea exactly what that is.  Hopefully someone else with more knowledge than I have will post.  Best wishes to you both.  :-)

[CalGal]

Atismom, there is a group that may be able to give you some help. Try: http://www.apfed.org/ee.htm

[Atismom]

Jaybay it's  not the fruit that will build up in her system it's the sugar molecules. Since her body can't process the sugars they will build up in her colon over time is she eats it (whatever she dosen't vomit and stays) and she will need a colonoscopy over time if we don't watch her intake. She can't have fruits or sugary foods...but she is a child and does test me.  She is elminating regularly but the sugar molecules seem to be the problem. Our current doctor thinks she may have some type of malabsorbsion with the sugar issues as well.  I'm just worried about the everyday foods she eats as just about everything contains some type of sugars. We just don't know if the little bit of sugars she gets everyday with regular foods are building up in her colon. I don't want it to hurt her in say 10 years and then get told she needs a colonscopy. So frustrating especially as no one knows much about this. Plus she has had it since birth so that just makes it more interesting. I have a child who has never in her life drank anything other than milk or water!