Sunday, July 29, 2012

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?


Dana Meijler said...

That's wonderful Val! I love how all these nutrient steps your taking are not only improving Billy's health but also his quality of life and even his autism issues.

I am no expert but I am convinced that the additives and chemicals in our food are at least partially responsible for the increase in autism but also other things, for instance girls hitting puberty much earlier than before.

Maya doesn't have gut issues so we've never explored seriously going GF/CF plus she also eats a good variety of food and is willing to try new things (particularly if I puree it into a smoothie or in soup) but we do try to eat organic as much as possible including organic bread (which we have to buy every day because you can hammer nails with it by the next morning.

I think it is great that you are doing this and it is helping and I think it is even better that there is still bacon, fries, hot cross buns and chicken nuggets. Life is also to be enjoyed and part of that is having foods you love.

Michelle said...

I am SO happy to hear this! And way to go Billy for being ameanable to change. Dylan also has bowel issues, but very different than Billy's. Dylan has retention issues - it is, unfortunately, not something I can change with diet, but it has to be behaviourally done. You've done a lot, and again, I am so happy for you both! Keep at it. Make sure to keep updating! And as for the topic of poo, many autism-moms freely talk about it. Kind of freaks out NT-moms, and I would know, I mistakenly mentioned it to a woman I knew since childhood. LOL! You should have seen her blush!

Zoe said...

Well done you for ignoring all the naysayers. So pleased its working out for Billy. Gluten is bad for all of us - wish I could keep it out of my own diet.....have done sporadically but keep falling off the wagon :( However, my son (now 13) has been gf/cf since he was 5 and although he looks like he is a 'non-responder' (ie no dramatic changes observed), because I've read a lot of the science about it, I'm sure its helping him quietly behind the scenes. He never struggled with poo issues but he does have a compromised immune system and impairments in nutritional absorption.
Looking forward to hearing more about your experiment - both for Billy and for you.

Michele said...

Maybe the bacon is the culprit? Loaded with nitrates and other nasties. Given you are eliminating additives etc maybe another thing to consider cutting out (see Sue Dengate FAILSAFE for the specifics of what to be cutting out re additives and naturally occuring thingies the amines, glutamates and salicylates as well as the chemical colors/additives/preservatieves etc . GF here too as my 7 yo has coeliac. Havent noticed great diffs in our little guy with ASD but I have to say I have not gone the full GF/CF and not as strict with him as we are with her (ie he has bikkies at granmas or the cupcakes at kindy etc) so really not a fair trial. Pleased to hear your great improvments and after a short time of 10 days too. But yeah I get the whole do anything for a nice bit of toast with your cup of tea!! Some things I can live with out others..... so hard.....but worth it for the gains you mention

The Bright Side of Life said...

So excited that you are seeing a difference. So jealous that Billy eats such a wonderful variety of foods. Great post, Valerie. I really enjoyed reading it.... I don't mind poo, ya wanna swop! ;-)