Hi my son is 11 and has been under investigation for the last 5 years for gastric problems. Its only been the last 3 years that the hospital are taking notice and even then its a struggle!!
When we noticed he wasn't gaining weight we were sent to a gastro consultant, to cut a long story short, we ended up with a consultant from Great Ormond Street and after endless tests have been told they dont know what is causing my sons problems.
Basically his stomach distends constantly, he has wind and is constipated but can go the other way for no reason. His body doesnt seem to absorp the nutriants and proteins from food so currently he has a PEG inserted into his stomach and is fed a special feed at night to give him the nutriants he is missing.
We have done the elimination diet including no food for 8 weeks and have finally discovered he can eat chicken, lamb, potatoes,rice, most veg except corn and most fruit except banana's and tomatoes which is a killer as his fav dinner is my pasta sauce!!!
Even on this diet he gets distented but he also suffers from hyper-mobility syndrome with associated learning disabilities and ADD. If you saw him you couldnt tell he had all these problems and is the most loving boy you could meet.
Life is difficult at times especially eating out as most things have a coating on or sauce but we manage and find a lot of places really helpful, I do have to turn a blind eye to seperate food cooking when out as with all his intolernces it would be impossible for any kitchen to be totally clear although I do ask about the wheat and gluten side.
Shopping is a nightmare as most things have at least 1 ingredient he cant have and having to cook just lamb and chicken from fresh proves very expensive!!
Its also the bordem factor trying to come up with inventive receipes with limited ingredients is a challenge to say the least!! Im thinking of writing a receipe book for others with numerous intolerances.
We are now waiting to change his PEG to a button and another op involving his large bowel and botox!!!!
Is anyone else here on a similiar restrictive diet and if so wonder how you cope?
I have been allowing him some of his not allowed foods as a treat just to break it up a bit but after the last Dr's consultation with GOSH and not getting anywhere again Im taking matters into my own hands and stripped his diet right back and I am keeping a diary and photos of our progress.
Just to see how he is and if it makes any difference.
This week he has been allowed his cookies so cutting them out next week as they contain maize and he cant handle whole corn but not sure with the maize.
Will be a tough week for him as he loves his cookies but I am fed up of getting fobbed off and being told he'll prob grow out of it !! He hasnt yet and a recent article I read from another Ped Gastric consultant at GOSH said its doubtful with so many intolerances and allergies they will.
Next step after his investigation is a second opinion as we are getting nowhere fast and its causing so much anxiety and stress on our family especially as I just feel like I talk to a brick wall constantly with hospitals and consultants.
Will keep you posted, if anyone is interested! lol