Recently, Rayyan's speech therapist asked us if Rayyan has food allergies as there are dark rings under his eyes. I said I don't know and seriously, I don't. As far as I know, most ASD kids are somewhat 'allergic' to gluten and casein which is why the GFCF diet is recommended. Rayyan is on GFCF diet but there are not many visible changes after the diet which is why I decided to review the diet and why it is not really working...
1) He has his gluten and casein moments... When he was really sick last month, he wasn't eating at all. He refused to eat his usual food and in the end, worried sick of his health, we offered bread and he took that readily. So yes, times like these, we give in and he got his gluten/casein dose. So yes, we are not strict.
2) Still on the subject of not being strict, I have read that apart from avoiding gluten-laden and casein-laden food, we also have to avoid eggs, corn, soy and nuts (I can't remember others). We don't give Rayyan corn and soy but I do give him eggs and nuts. These are good for his health and if there are so many food to avoid, what do we give him???
3) Eating out is really difficult. We usually avoid eating out and when we do, I try to get GFCF food. I sometimes ask about the ingredients if I am not too sure. But then, they might not tell me everything that is added and outside food is usually laden with MSG and flavourings, which is also not good for him.
4) Talking about flavourings.. Rayyan loves McDonald fries and I give him that about once a week because fries is a really strong motivator/reinforcement. I can get him to do almost anything with fries. I have read a book about a mother who gives her son McDonald's fries as it is fried using vegetable oil and GFCF free. Dumb me, I didn't really try to find out what's in McDonald's fries and decided to give it to him. I just googled about McDonald's fries and found out that they actually use natural beef flavouring which contains milk and wheat!!! The very things that we are trying to avoid! No wonder there is no improvement in him.
So that means no more fries for him??? Oh noooooooooooooo!! How to motivate him to do difficult stuffs???
So is this diet good for him after all? I have been weighing this since he first started on the diet. The diet has been proven to work but we have to sacrifice so many things. For instance, I don't usually bring him to parties or gatherings because I know that the food served will be laden with gluten and casein and he will throw a tantrum if I refuse to give him the food. But we want him to be around people, to interact and socialise. But how is he going to do that if we are avoiding functions like these in the first place??
Then in school, we tell the teachers not to let him have what the other children are having as he's on a special diet. We were told by the teachers that he will check out the food that his friends are having and shows interest in the food. We don't want him to feel different, we want him to mix around yet, we are 'ostracizing' him by not letting him have what the others are having.
Also, we were told by his ST to let him try different textures and chew different kinds of food. This will be good for his facial muscles and jaws. But how to let him try different types of food when he is on this diet? He can't suck on sweets as they contain flavourings and will make him hyper anyway. He can't eat chocolates as chocolates contain milk. He hates the GFCF biscuits that we give him, etc, etc...
And then we have to wash his utensils differently for fear of contaminating the utensils with gluten or casein. And I have read that gluten can also go into the body via the skin. So Play-Doh is actually not good for him as it contains gluten. But we can teach so many skills with Play-Doh alone!! I have tried using homemade dough but he hates them! Argggghhhhh!!
Apart from all these, I have also read that gluten takes about 6 months to clear and a slight contamination will affect his system again!
So I am questioning myself again, is it worth it?? Should we continue?? I don't mind the money spent (yes, GFCF diet is expensive!!) and the hard work we have to put in but more importantly, is it really, really beneficial for him in the long run?
I really, really don't know.......