Tag Archives | gluten

The Atkins Diet for Autism? SCD And Me

By on August 30, 2010 in Autism

If you’ve had any involvement with the DAN program, you’ve probably heard about this diet but if you haven’t, there’s a good chance that you have not. It’s not as widely known as the GF/CF diet and is not as widely tried.

The reason for that is that it’s a very difficult diet to stick to, especially for a growing child and it’s also a very expensive diet.  It’s basically like the GF/CF diet on steroids… only without the steroids.

The SCD diet (or Specific Carbohydrate Diet) basically means taking out all starches and complex sugars from your diet (on top of Gluten and Casein!!!). I’m not going to get into specifics, you can read about it here if you wish… but I will tell you this, my wife and I are really struggling with this.

We have several reasons for having issues with this diet and I thought I’d share some with you:

1. Financial: We simply can not afford to be getting goat’s milk and other stuff that this diet restricts you too. It’s not in huge demand, it is extra healthy for you, it’s processed differently… in the end, it costs more. A one litre (yes, I’m Canadian) of goat’s milk costs the same as a 2 litre of soy milk.

2. Nutrition: Yes these restrictive diets are better for you, but better for you does not always mean ‘healthier’ for you. When you are dealing with an Autistic child that already will not eat meat, only eats 2 kinds of vegetables, no fruits… well, you get the idea. How do you take him off the rice pasta, rice and potatoes that he will eat?? What’s left?? Yes, I know some of diet experts will have alternatives but I can tell you right now that those alternatives leave him lacking in some vitamins, minerals and proteins that he should be getting in his regular diet. He’s skinny enough already.

3. Routine: Because we didn’t know about this diet before hand, we went with what we did know which was moving him to Soy milk, rice pasta and some other foods and drinks that he’s come to not only love, but depend on as part of his regular routine. Oh, and what child doesn’t love candy?  So when you have a child that only eats starches and candy and Soy milk… to move him to the SCD diet means a complete and total change to his diet and his routine. If you’ve tried such a thing with a child that has Autism, I can feel you cringing as you read.

4. Initials: I refuse to eat from a diet that has the same initials as me. Yes, my middle name starts with a C.

So what is the final verdict? Well, we’d like to try it, for the sake of trying it.. but we simply can’t. Not right now. Maybe not ever.

However, if you have tried it and hated it, liked it, still do it or quit… I’d love to hear from you. And if you haven’t tried it, well, I’d love to hear from you too. What are your thoughts?

Comments { 5 }

Going Out For Dinner With Autism

By on July 18, 2010 in Autism

If you’ve ever wanted a challenge in your life, try bringing an Autistic child out for dinner some time. I’m not saying that it’s so difficult that we’ll never do it again, because we do still go out from time to time… but it can be a bigger challenge than you might imagine.

First of all, you have the sensory issues to deal with… restaurants can have a lot of noises going on, especially if busy, they don’t have the best lighting most of the time, smells all around you and then… there’s the food. 99% of everything I find on every menu… my son simply will not eat. It’s not a matter of whether or not he can, he just won’t. Taste and texture issues prevent him from eating any meats (including fish and chicken), most veggies, most fruits and so on.

Now that we have 99% of all foods excluded from his diet, let’s talk about… his diet. My son is on a gluten free diet because when he eats it… he becomes a monster for the next 3 days. That sounds harsh but quite literally, eating some gluten will result in him becoming totally violent, completely uncoordinated, very difficult to communicate with and completely unwilling to listen or do what we ask of him. So, the few things that he would be willing to eat at the restaurant such as pasta or a grilled cheese sandwich are completely off limits. There’s no way we’ll put him through it or go through it ourselves.

Finally, there’s the tantrums… all of the sensory issues and food issues put together on top of a general uneasy/uncomfortable feeling that comes with being Autistic in public can add up to a complete and total meltdown right there in front of everyone. We’ve been there and had the glares from the people around us as we try to reel in our child back to a volume that’s a little less disruptive.

Then there are the hidden secrets, which is what we’ve been learning to deal with… recently we took my son out to a chinese all you can eat buffet where we figured that they would have at least something that he could eat, maybe rice?

Well, it turns out that they didn’t even have white rice, it all was fried rice… and all of it, fried in soya sauce. Well, as it turns out, half of the soya sauces out there are made with the primary ingredient being wheat, which is gluten. Some are not but many are. So giving him rice becomes a crap shoot… who knows what the outcome will be.

And sure enough, there was nothing else that he would or could eat. He ended up having watermelon, jello and ice cream for dinner. Even the ice cream is not really recommended as ‘casein’ is often included in the ‘gluten free/casein free diet’. But he has less of a reaction to it and a small scoop of ice cream wouldn’t affect him to any noticeable degree.

Imagine, your child is forced to have dessert for dinner because he/she can’t eat anything on the menu in a place where he’s too loud and prone to having a temper tantrum at any moment. Sound like a nice quiet dinner out with the family?

That’s what it’s like when your child has Autism.

I’m not going to offer up solutions for those of you that are looking for ways to make those dinners go more smoothly because I’m neither a professional nor do I think that any of my solutions will be solutions that will work for you… all children are different as are parenting styles.

What I will tell you is that you’re not alone. I will tell you that simply not going out is not much of a solution at all but understandable if you go that route. But I think that the only way a child will be a normal part of society is to get out there and be a normal part of society.  Like with all things, practice makes perfect… your child will get better as will your ability to handle those situations.

Comments { 3 }

What Is The Gluten Free, Casein Free Diet? Does It Work?

By on May 22, 2010 in General

This probably ranks #2 on the hot topic debates in the Autism community where parents are fighting with the ‘experts’.  Basically that means that there is a whole lot more to this than a simple yes or no answer, there is no black and white here and therefore it causes a lot of tensions.

I’d like to cover this topic in a few areas: what is the diet, what is the theory behind it and will it work.

What is the GF/CF diet?

Breaking it down to it’s simplest form, the gluten is wheat and the casein is dairy.  This isn’t limited to bread and milk however, it covers just about everything you can find in your local grocery store aside from meats and veggies/fruit.  So cereal, pasta, cheese, cake, snacks, waffer cones you hold ice cream in… everything.

Moving to a GF/CF diet can be a rather huge step for the average person as it means no more sandwiches, switching to brown rice pasta and giving up just about everything you eat. No more hamburgers, cakes on your birthday, cookies, grilled cheese, kraft dinner… we’re talking about eliminating just about everything on some people’s regular diet.

In our house, we’ve put our son on soy milk, brown rice pasta, eggs, bananas and peanut butter and a few other things. You learn to find them when you have to. Also, you don’t have to be all that limited if you’re resourceful. There are some great sites around the internet with some absolutely amazing GF/CF recipes and grocery stores are growing their GF/CF sections a lot over the last few years.

The truth of the matter is, gluten is quite bad for you. There’s no healthy reason at all to eat it, it’s simply added to our foods to give it it’s texture, consistency, help preserve it… stuff like that. If everyone ate less gluten, we’d all be healthier so there’s no reason not to give the diet a try. Gluten proteins and Casein proteins are not essential to a healthy diet and therefore there’s not only no risk in being on the diet, it’s actually good for you.

What is the theory behind it?

I don’t think they’ve proven it scientifically, but they have narrowed it down pretty good… the theory is that some Autistic children have a digestive problem where their systems are unable to break down the gluten and casein proteins in their stomachs. This causes them to work through their systems, entering the blood stream and eventually finding their way to the brain where they act like a pretty powerful drug, causing the children to become very hyper, to see things (colours and trails behind moving objects), become irrational, unable to speak, clumsy and so forth. Imagine a grown man tripping out on heroin and you can begin to see similarities in your child after eating some bread.

Will it work?

Well, this is the tricky part and where the heated debates come into play. Even the ‘experts’ can’t agree because they can’t get the same results twice. In this article, you can see that they have concluded that the diet does help and further down the article lists another study where others concluded that it doesn’t: foodconsumer.org

Autism is a pretty tricky condition with seemingly thousands of causes, thousands of differences and thousands of different ways to ease it.  This means that yes, the diet might work… might. However, some Autistic children simply are hyper, clumsy, unable to communicate… that’s how they function and unfortunately, the diet will not change that.

But a lot of times, the diet actually will help and therefore, I really recommend that you at least try it… a week, 2. Try.

In Cameron‘s case, we put him on the diet and saw a difference almost immediately… less repetitive motions, more eye contact, more calm. It was a miracle in our eyes and we never looked back. Our house is almost completely gluten free at this point.

And this is how I know that not all answers are guarantees for everyone. I said we’re almost gluten free, not casein free. People lump the two together but in reality, just as it may or may not work, in our case, it half worked.

Once we removed gluten from Cameron‘s diet, he was instantly a different child. The casein however, made very little difference. If he has too much, it does affect him a little. But for the most part, we can still give him orange cheese, yogurt and ice cream. We keep him on soy milk though.

Conclusion

Don’t listen to experts, don’t listen to parents. The only person you can listen to is your own instincts and your child’s results. There’s no harm in trying the diet, there’s no harm in not trying it. If you do try it, you may see results, you might not.

There’s only one thing I can say to all parents of all Autistic children…. try everything!! If it worked for 1 child out of one million, try it. It might work for you. Try the diet, you don’t have to commit to years of eating food you don’t like. Just try it.

Comments { 2 }

The Lessons We Learn the Hard Way

By on May 20, 2010 in Autism

Parenting is one of those things where you can’t help but share your experiences and insights with other parents, especially if they’re new parents. It’s one of those things where, even when you know you shouldn’t, you still speak up when you see them doing something you don’t agree with. It’s one of those things where, when you take care of their child, you ‘sneak’ in some of your own brand of parenting because you think they’ll be better for it. It’s… well, it’s really quite invasive, isn’t it??

We all do it and we all mean well, it’s always done with the kindest heart, even when you just want to scream at them to just shut up… please just shut up! But you don’t, because you know they’re not wrong, and they’re just trying to help… it’s just that, they don’t know your child as well as you do and their methods, although they may not be wrong, may be a bit dated.

Let’s take grandparents as an example because I think we can all agree that they can be some of the worst in this department. They raised you and you turned out just fine, right?  And they are a great source of wisdom, so it’s only natural they’d have the most to ‘share’ with you.

But sometimes, it can be a bit much for the young parents who just want to do things for themselves, right or wrong… they need to be their own kind of parent, not someone else’s.

Now, this brings me to Autism… let’s face it, even if they had an Autistic child, they didn’t have yours… and they’re all different. But chances are, they didn’t. And they haven’t done all the research you have nor spent the same amount of time with your child as you have and therefore, they keep giving their same old advice and it really doesn’t even come close to applying to your situation now. But they still mean well and you still listen with a smile knowing full well that you can’t do what they did.

What I am trying to say is that it’s up to you to educate, even the most stubborn “I did it and I know what I’m talking about” kind of advice giver… you can’t just smile and nod because they don’t know. They don’t understand. They haven’t been in your shoes.

I’d like to share with you one example where we didn’t educate enough, we didn’t make ourselves clear enough or… we simply never would have been able to but after the deed was done, the lesson was definitely learned.

We took my wife’s mother with us to a pasta restaurant where we knew full well that our choices would be extremely limited since Cameron (my son) is on a strict gluten free diet. We got him some pasta but never intended for him to eat much of it. Just a little… and we’d pad that with other food, even deserts if we had to.

Well, being a good grandmother, she disagreed with filling a child with deserts or ‘other food’… she knew full well that he was on the diet, and knew fell well that we’d object. However, she didn’t know just what the gluten did to him. She didn’t understand the full extent of his condition. As I said, we tried to explain but really, who believes that a little pasta will set off a child like a grown man on heroine?

So, as my wife and I went off in search of food for him (at a buffet), Cameron’s grandmother took it upon herself to feed him some more of his supper before we got back. As I said earlier, she wasn’t really wrong in doing it… it’s what I would expect a grandmother to do. However, as I also said, in the case of Autism… we failed in educating her properly.

We got back to our table and protested what she did, she argued that he’d be fine… damage was done, what can we do.

So we returned home afterwards where the monster quickly revealed itself… and when I say monster, I mean it. He was screaming, going wild, jumping off of furniture… to say he was bouncing off the walls is quite a literal expression. He actually got a big bruise under his chin from hitting a wall… under his chin!!

He finally went to sleep some time after midnight (his bed time is 7pm) and woke up very sluggish, very slow and proceeded to spend the entire day on the couch, in a ball, rocking back and forth apologizing to us, telling us he loves it, saying sorry…  just, so secluded, so alone.

I swear to you, it was like watching a drug addict go from a major high to a very extreme low and it all happened so very fast. Even other family members that were around that day or the day after commented on how bizarre he was acting, how different he was. They were shocked that a few bites of pasta would cause such a huge change in him.

His grandmother felt terrible (I really hope she doesn’t mind me sharing this story) and she realized then and there that despite her good intentions, she really needs to take what we say seriously. That when we say he has extremely bad reactions to gluten, we mean it.

It’s a lesson I wish we could make really clear to those around us without them having to see it first hand… but I have yet to find what works. Parents are proud people and they raised children successfully. Plus, Autism is still very foreign to many people, especially older people. To some people, they just see wild, disobedient children and some even go so far as to dismiss Autism entirely… they figure it’s just the parent’s fault these days.

What ever the case, it’s hard to convince more experienced parents that they really don’t know better than you. But for your sake, for your child’s sake, you have to.  Don’t wait until they learn the lesson the hard way. Sit them down, show them videos, show them information, make them understand.

You have to prepare your child for the world as best you can but you also have to prepare the world for your child.

Comments { 0 }