My son, he's almost eleven, is a high functioning aspie who's almost 5 feet tall, very thin boned, and weighs about 55 lbs. The doctors (and his mom and me) are getting concerned because he's actually lost weight over the last few months, instead of gaining it. He's been checked for cilliac disease (via a slightly invasive stomach lining biopsy!) and wheat and milk allergies, but has shown negative (he hasn't had any diarrhea problems, in fact the opposite). The GI specialists says this is typical for Aspergers, and may end up putting him on a feeding tube from time to time! He's on medadate (and yes I don't like it, but I've seen his school and social functioning with and without, and concede that that it does help, at least for now)and has also asthma, but is otherwise healthy.
He's a great and generally cooperative kid, who will sometimes try new foods, but sticks to his fav's like cheese pizza, chicken fingers, fish sticks, pasta with Alfredo, cheese, hot dogs, etc. a very mid-western starch and protein kind of diet, with some brocolli and carrots now and then, plus cheetos, ice cream, and some chocolate. He doesn't eat fruit (ever), or lettuce and tomatoes, and it's a chore to get him to eat lunch, even though we pack it. When he's with me, it seems he eats enough that he shouldn't be losing weight, usually breakfast (waffles) and a snack or two plus a decent amount of dinner. His mom says she was the same way and build when she was young, but doesn't remember losing weight (except once when she was very sick), but had far less medical attention and wasn't diagnosed an aspie until after he was. So my theory is that he's not absorbing as much of his food as he could, perhaps because of some nutritional deficiency or related condition.
Does anyone have any experience with this? I'm open to anything that has even a vague basis in science or empirical efficacy. Most of the alt medical posts you read online say no wheat or milk, that it's bad for ("or even the cause of") autism/aspergers, but what am I to think when the standard medical tests show negative on those, and studies with a GFCF (gluten free casein free) diet don't show any corroboration of the claims, except in unscientific single-blind studies, and single patient testimonials? There are also some studies that point out that thin boned children lose even more bone thickness when you take them off of milk. So generally what I'm looking for here is not the web-viral hear-say alternative cures that are all over, but some real experiences with approaches, supplements, etc. that might improve either his appetite and or food absorption. Any info or leads on this would be greatly appreciated, thanks