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
Written by
missporterloo
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first of all my heart goes out to you. I suffer from a long list of intolerances too (all gluten plus soja and corn), all dairy, nightshades (potatoes, tomatoes, aubergines and peppers), yeast, sugar. Makes life challenging and its hard not to keep eating the same thing. I have to make everything from scratch. I have found a few really helpful websites. I also have a daughter who has similar problems. We have already identified gluten and yeast but are still trying to find the others. Watching my daughter suffer without being able to do anything or being helped by a doctor is so frustrating and heartbreaking. I have written a blog to help people understand a little bit more.
Obviously we are not in the same state as your son. Has he been tested for Lyme's disease? Have you looked at this website -
nutritionalmedicine.org.uk/... or gdx.co.uk - they seem to have some good ideas which we are considering. Have you thought about leaky gut or candida? Probiotics?
Please let me know how you get on and if you get to the bottom of it as we are still looking for answers too
I think you are doing an amazing job- its so difficult with children , especially when they see their friends eating anything or get invites to parties, etc which they cannot go to. Very tough.
His diet is so restrictive it must be a serious challenge. You mentioned about the cost - have you checked to see if you are eligible for any disability/caring grants? I'm not au fait with what's available, esp. as it is changing but just wondered.
There's not a lot of advice I can give as you clearly in good hands and have taken charge of things yourself - but if there is anything we can do, just ask.
Hi, sorry to hear what you are going through. Just wondered if you thought about seeing a nutritional therapist? There are ones out there that speclise in children and ones who specalise in gut problems. Its really worth thinking about it.
My heart goes out to you . My daughter has multi food and enviromental allergies. Wheat , Soya, Peanut, kiwi, melon , beans and pulses. I know it is very differcult on such a limited diet. I find it so unfair for her especially as I have an 8year old son who eats everything. Like you I have a few times let her have a little amount of something she is not allowed but I do and her pay for it later so now I look for alternatives.
I have made my own cook book with alternatives as I couldn't find one which suited her with her multi allergys.
Also because of her enviromental allergies I am reluckant to try her on different oils etc like rapeseed oil it is now in everything as it can be mass produced cheaply.
One thing which has helped me is I have a food app on my phone. You scan the bar code and once you set your allergies/intolances it tells you if it is in there. It is called Foodwiz...
It took a long time for her to be tested for allergies. I ended up doing a diary with pictures. I put what she was doing/ eating/playing/ what the weather was doing everything. With that the doctors finally believed me something wasn't right. It is very hard when you know your child better than anyone else and the doctors don't take it seriously enough.
I also keep getting told hopefully she will grow out of it arhh hate when they say that.
Good Luck xx
Hi missporterloo, firstly poor little chap and good for you as you are really pulling out the stops for him.
Have you tried him on quinoa? Quinoa is not a grain it is the seed of the Goosefoot plant and is in my opinion a super food, it was eaten by the Inca's when they marched to war! What makes quinoa special is all the foods that we eat are turned into 23 vital amino acids and our body makes 15 of these base amino acids but the remaining 8 have to be gotten from food and quinoa contains all 23 amino acids that our bodies need to function.
Good luck to you and your son and if you want to get anything off your chest you carry on as you both deserve all the support that you can get and please let is know how you get on.
Thanks everyone for your support and ideas. Yes he is under a dietician who is always there if I need her help and we are also under CAMH for counselling and family suport.
Well a quick update the strict diet is working it seems!! He's stomach hasnt been as distended and he even admitted he felt better, less stomach pains and slightly more energy which is a good sign but bad for him as it means he is still allergic to his forbidden food. The cutting out his cookies due to maize went out the window when i discovered his bread, Warburtons do a wheat and gluten free loaf now, contains maize, as does his gravy and salad cream!!! BUT still stuck to the cookie ban as he was eating up to 5 a day what with school and home and although the other foods had maize in, but he only had them in small amounts, his stomach has stil not become as distended as normal!!!! So next step is introduce cookies back in, in a few weeks, and see what happens. If the bloating starts again its the cookies, poor lad as he loves them, but have discovered a cookie receipe so said we would make our own.
Also pleased as got him into the school i wanted that specialises in most disabilities and learning problems while still being in a mainstream school so really happy about that.
He's still not right at the min and very worried about him as he struggles with being different from most kids and gets so frustrated and unhappy with it all, Unfortunatly there are so many complexaties attached to his health it makes life quite difficult for him at times but who can blame him I don't think most adults could cope with what he deals with regarding his health and diet but mo he takes it all in his stride most of the time.
I tell himbeing different is good because to be perfect would be boring x
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