The view from the gluten free train...

Ten days ago, after a lot of procrastination, discussion and false starts, Billy and I both went gluten free.

We have been told, repeatedly, by Billy's GI doctor (and his GP and his neurologist and his geneticist and a random woman who was just walking past us on the street) that there was no point in Billy being gluten free. Their reasons included a lack of serology, no evidence and gluten is so yummy why would you even think of giving it up.

Billy lives with chronic reflux and constipation. (Hate poo-talk? Stop reading now.)

Billy's poo is a curious bright orange colour and it's full of undigested food. It comes out every day, in volumes that would make a sailor blush, but he does not clear his bowel completely. He is, periodically, unable to perceive or halt the arrival of poo. He is stopped in his tracks multiple times a day with pressure and burning in his chest. His tongue is often the colour of tepid tea. His teeth are eroded by acid. He is almost 9 years old, not 90 years old and not 19 months old.

 - We have medicated him (upside: makes the poo move and fixes the reflux; downside: makes him vomit bile and means he's taking drugs every day).
 - We have changed his diet (we went organic, took out dairy and soy, decreased as many numbers,  colours and chemicals as we could,  increased the juiced/pureed/whole fruit and vegetable content, added all sorts of extra fibre, added prebiotics, probiotics, enzymes and large amounts of Omegas,  increased his already insanely high intake of water).
 - We have made sure his body is in constant movement (OK, so autism kind of takes care of that for us, but we encourage a variety of constant movement).
 - We have engaged in behavioural intervention around toileting (timing, posture, checklists, rewards).

While the constipation definitely improved with all of these interventions, it has always remained an issue. Nothing has made it become a non issue.

Now, I really want to say that going gluten free has made the constipation disappear.

It's not gone, but ten days GF, and it's definitely improving even more.

Billy's poo (tune out and sing a song with your fingers in your ears if you are not keen on talking about poo) is no longer bright orange. It is something approximating a child sized poo. There is still the odd accident, but we are starting to see that might have something to do with food additives which we are slowly isolating (right now sorbitol seems to be the bowel devil, but it could be perfectly innocently masking some other evil).

Removing dairy and soy definitely helped, and removing gluten has definitely helped too, poo wise.

But there's more.

As we have been fighting the poo beast, we have been noticing the added benefits of the changes we have been making.

I haven't yet commissioned a peer-reviewed, independent study on any of this (though that happens so rarely in autism that I guess I don't need to mention it) but Billy is without a doubt better off.
He is generally healthier (duh).
He is sparkier and spunkier (maybe that was going to happen anyway, but it's funny and confronting all at once).
He is way less foggy generally (GF has contributed to this in particular. His happy is happier, his funny is funnier, his sad is sadder. He is way more interested and engaged in family life and life in general).

More importantly, he is NOT missing the gluten. He is accepting the change.

Now let's take a moment and realise how important that last sentence is.

Autism.... change.... acceptance.... food.... what?

It's a reverse vicious circle, in Billy's case. Where before he would demand the same foods, really struggle to change his thinking about changing foods and so keep eating those same foods... now he can change foods. How? I have no idea. But he is, and we did not think he could.

He feels better, he is better, he gets it.

In the past, we took the GF-will-make-no-difference advice of the GI quite gleefully because, quite frankly, the idea that we would have to eliminate Billy's preferred foods was inconceivable.

Well, as we chuff along happily on the GF train (minus croissants, KFC, hot cross buns and chicken nuggets) I can happily report, he is fine. He is eating other stuff (OK, there's a lot of bacon and french fries... but vegies, fruit, grains, legumes, nuts and seeds as well). It's by no means solved, but it's possible, in every possible way.

If you are, like we were, GF curious, but scared of the change... take it from me, it's worth a go.

It's worth a go. It's worth a go. It's worth a go.

From a grown up, non autistic perspective, I could murder a piece of white toast. And I apologise for my violent language, but that's how I feel. I could hunt it down, capture it, cook it, devour it and then go looking for its frightened little friends.

But, in solidarity with my little man, who is handling more than we ever thought he could... I will happily shelve my glutiniverous tendencies and eat more fruit (wine is fruit, right?)...

I'm sure there's more to be said, and I'm sure there's a heap more to learn, but for now I'm off to soak nuts and beans and search the pantry for random sorbitol.

It's worth a go, right?