Utter Autism

October 3, 2014

Old Notebooks : The Gluten Free Diet

April 24, 2000

We started Adrian on the GFCF diet this past week.  This, of course, means a lot of restrictions on foods so I’ll be sending both snack and lunch foods from now on.

It was not an easy decision to try Adrian on a special diet.  First, there’s the skepticism to get by.   As a young parent, it’s hard to go against convention.  Especially when you’re not sure what’s the right thing to do. There were other potential ‘treatments’ we passed by because they were a bigger step than we were prepared to make at that point.

The diet, on the other hand, seemed fairly harmless.  It wasn’t going to hurt Adrian or the bank account to give it a try and see what happened. So we committed to a one month trial removing all gluten and casein from his diet.

Back in those days that was not an easy feat.  Today I walk in my grocery store and there’s shelves full of gluten free products.  Back then, to find anything gluten free at all, you had to shop specialty health food stores and even there the selection wasn’t great.  It was a lot of work to prepare the food.  And for a kid who didn’t take easily to new foods well, there were other challenges besides.

The results?  Well what we saw in that first month was enough to convince us that it didn’t hurt to stay on the diet.  Some of what we saw improve:

  • He waved ‘hi’ and ‘bye’ for the first time ever
  • He was playing with toys appropriately more than ever before
  • He played with a toy with a friend for the first time
  • He was ‘increasingly willing to tolerate various sensory and movement experiences as well as participate in activities chosen by the therapist’
  • His eye contact improve both at home and at school with therapists and teachers each mentioning it to us separately
  • He did all the motions to songs without hand over hand
  • He improved his ability to follow directions
  • He seemed to be more aware of his environment

And that was all in the first month after starting the diet.  It was a lot of improvement over a short period of time.  He’d been in school a full year and we hadn’t seen that much so fast in all that time.

Could it have just been coincidental? Yup.  We’re talking about a kid who was getting full day preschool including multiple therapies who had 2 sisters at home who were themselves going through many of these same developmental milestones.  Maybe he was just ready for all that and it would have happened diet or no.

But as the diet wasn’t causing any great hardship on Adrian and we were seeing such good things… well, why not stay on it?

In the following month we saw more great strides.

  • Participation in circle time including clapping at the appropriate time
  • Playing with a wider variety of toys in more appropriate ways
  • He gave his sisters hugs and responded to their requests for hugs from him
  • He gave my husband and I kisses for the first time ever (he was 3.5 years old)
  • Babbling – something he’d not done since he was about 6 months old
  • Attempts to say words – closer than ever to talking with approximations of the word book and up
  • Use of his first sign language
  • Started  paying attention to family pets for the first time ever
  • Attempted to sing a complete song by himself with motions and ‘singing’
  • Played ‘Ring around the Rosie’ with his sisters – unprompted
  • Blowing kisses for the first time ever
  • Attempts to say more words – out, all done, eat, etc.

Again, this is all within 2 months of starting the diet.  Much, much more progress than we’d ever seen before in such a short time.  It was encouraging and not knowing if it was the diet or something else, we decided to just continue it indefinitely.

October 19, 2011

Coconut Flour Recipes

Filed under: Diets, Specific Carbohydrate Diet (SCD) — Carol @ 3:45 pm

I did the ‘subscribe’ thing over on Amazon.com to get shipments of coconut flour automatically sent to us.  Unfortunately, it seems I need to ask for shipments less often.  I’ve got 5 packages of coconut flour in my freezer now.  Yikes!

The nice thing about the coconut flour is that you don’t use very much of it when you’re baking.  Most recipes only call for a half to 3/4 cup to make a full cake.  That means that 5 packages in my freezer will go a looooong way.

So I thought I’d share a few of our favorite ways to use it.

Vanilla Coconut Cookies (found HERE)

4 eggs
1/2 cup honey
1/2 cup solid coconut oil 
1 1/2 tsp vanilla
1 tsp lemon juice
1/2 tsp baking soda
3/4 cup coconut flour
1/4 tsp sea salt
 
The first time we made these the vanilla seemed rather boring so we sniffed through the spice drawer till we happened upon the almond extract.  We added less vanilla than was called for and a bit of the almond extract.  The rest of the family loved it but Adrian, not so much.   So the next time we made it we added cinnamon.  Everyone enjoyed that.   Other options?  Lemon or orange extract, coconut flakes, diced apple and cinnamon, squash or pumpkin, ginger and cloves…..
 
 
 
Flatbread (found on a website that has since expired)
 
WET INGREDIENTS:
12 eggs
¾ C oil
¼ C coconut milk
1t lemon juice

DRY INGREDIENTS:
1 C coconut flour
1 C almond flour
1 t baking soda
1 t salt

Bake it in a pan lined with parchment.  You want it to be about an inch thick.  A 11″x 15″x 2″ pan works perfectly for me. I shared this recipe before.  It’s the one we use to make yummy french toast sticks.  🙂
 
 
 
Cinnamon Bun Muffins (found HERE)

Muffin Ingredients (makes about 8 muffins)

  • 1/2 cup of coconut flour
  • 1/4 teaspoon of baking soda
  • 1/4 teaspoon of sea salt
  • 4 eggs
  • 1/3 cup of yogurt
  • 1/2 cup of honey (or other sweetener)

Cinnamon Topping Ingredients

  • 2 tablespoons of ground cinnamon
  • 4 tablespoons of honey (or other sweetener)
  • 2 tablespoons of unsalted butter, melted (ghee or coconut oil will work too)
  • 1/4 cup of chopped walnuts (optional; or other nut)

Drip the topping over the muffin (or in my case, over the cake) before you bake.

And, of course, our Lemon Cake (adapted from this)

6 eggs
1/4 cup lemon juice
1/2 cup honey
1 tsp vanilla
1/4 cup plain yogurt
3/4 cup coconut flour
1 tsp baking soda
1 tsp lemon extract
1/2 tsp sea salt

You may have noticed I failed to include all the how-tos on all these recipes.  Um, yeah.  It’s mostly cause I’m not terribly good at following directions in the kitchen.   I generally cook all these things in the oven at the same time, on the same temperature until they’re ‘done’.   The original recipes may or may not contain instructions to mix wet and dry separately.  Ditto on the not-following-directions-in-the-kitchen.  Everything goes into my Kitchen Aid mixer in whatever order I feel like throwing it in.  My cooking hasn’t killed anyone…. yet.  😛  

But feel free to follow all the normal baking conventions if that floats your boat 🙂

October 18, 2011

Still on SCD

I’m happy to say we haven’t had any more flare-ups anywhere near as bad as that last one in September.   That’s not to say that everything has been absolutely perfect.  There are still days when, for whatever reason, things are a bit harder.   But overall?  Overall our situation is very much improved from the way things were pre-SCD.   Most days we have no major incidents and he’s generally calm and happy.  The tantrums we see are short lived and much more mild.

This diet has absolutely made a huge improvement in our lives.  I can’t imagine going back now.

But Adrian’s little brother can.  Weekly he asks, “When does Adrian’s diet end?”  He doesn’t like the answer. 

As much as little bro misses his American cheese, I don’t feel like it’s really been all that hard on us keeping to our rule that we will not eat things Adrian can’t have in front of him.  The other kids are homeschooled and the hubby works from home so we often will have the ‘illegal’ foods during the day when Adrian is at school.   They still get to eat their sandwich bread and munch on the occasional cookie for a treat.

Dinners we usually either have foods Adrian doesn’t like at all or have things the whole family can eat together.  The diet has had a positive effect on everyone’s diet as I’ve discovered new dishes to try in searching for Adrian safe alternatives to some of our old regulars.  Chicken burgers, spinach in cheese sauce, cauliflower mac n’ cheese and cheddar crackers have all made it into our regular rotation. 

We’ve also seen Adrian’s food list expand slightly as well.  For an autistic child, even ‘slightly’ is a big deal!  He’s now eating additional dried fruits such as apple and pineapple.  And we’ve managed to find a ‘pancake’ recipe he’ll actually eat!  It’s called easy sandwich bread but if it looks like a pancake and smells like a pancake….. So far the only way he’ll eat it is topped with peanut butter and honey.  Still, that’s another meal I can send for lunches.  Yay!

So we’ll be continuing the SCD for as long as it continues to offer us this much more peaceful life.  Even if it means no more American cheese 😛

September 19, 2011

Duct Tape for Life?

So this past week was rough.  It started out ok.  We were seeing more aggressive behaviors and much less calm from Monday on.   We know he ate part of a wall at one point and I discovered that a pizza dough I made used an illegal parmesan cheese.  He’d eaten that on Sunday and Monday. 

So ok, we fix that and we’re good.  Right?

Wrong.

We never quite got back to that good spot again the entire week.  We did ok but it wasn’t the same.  While he was coming down from tantrums faster than before the diet, we were still having tantrums all the sudden when we hadn’t had any for weeks.

Hmm.

Then Saturday and Sunday came.  And it was awful.  Right back to as if we never started the diet.  WHY?

We just don’t know.  We keep things Adrian can’t have locked up in a footlocker.  We did find that wide open on Saturday at around 11 am.  But despite the fact Adrian must have been in that room, we can’t see what, if anything, he took.  There were muffins, candy, chocolate chips, rolls and cereal all there, seemingly undisturbed. 

The only thing he could have taken that wouldn’t have been obvious was granola and cereal bars that were all thrown in a plastic grocery bag.   But then there would have been wrappers and we didn’t see any.  Granted, I didn’t go searching through the garbage.  I wish now I had.

Saturday was bad.  Sunday was worse.  Today the school had the worst episode they’ve seen since the start of the school year.  He came home with his shirt all ripped up from a rage – Hulk Hogan style.  He’s been crazy here since he got off the school bus two hours ago.  And all of that was with using all the meds. 

The worst part of it all is I just don’t understand why.  What’s different?  Is it something he consumed?  If so, what?  Could it be he got to something in that box and it’s just taking longer than the usual 24 hours to go through his system?   Could it be the dried pineapple that I was so happy he finally ate on Saturday and Sunday?  Is it something else in his diet that I messed up with?  Is it something he was eating before that he’s reacting to now?  Does it have nothing to do with food at all?!

At this point you could tell me it’s nothing more than the phase of the moon and I’d be happy.  I just want to know WHY.

The return of these behavior problems brings back all the old familiar stress.  I can feel it in my back and in my shoulders.  I’m listening to him carefully, trying my best to catch him before he goes over the cliff into total lack of control, waiting for the smash of a window, the banging on the wall, the yelp of a poor sibling who happened to be in the wrong place at the wrong time,  another broken appliance, another hole to fix, …

I’m sitting here with duct tape now, repairing the computer headphones he broke in a tantrum.  I’m covering every last inch with duct tape.  It’s the only way we can make them last.  Then I’ll duct tape a new set of ear buds for his music player because after months of abuse, he finally broke the last duct taped pair.

And I can’t help but wish that duct tape could fix all of this too.

September 10, 2011

SCD: Today’s Baking

In the time it took my husband to prepare yummy pasta and shrimp in a lovely cream sauce for the rest of the family, I did my baking for Adrian’s SCD.  I made….

1.Peanut Butter Brownies (I double the recipe so I can use the whole 16 oz jar of peanut butter at once.  It bakes up perfect in my 9X9 silicone pan.)

2.Ginger Cookies (you can probably guess we didn’t roll and cut them out cause, yeah, I’m too lazy LOL)

3. Lemon cake  

6 eggs
1/4 cup lemon juice
1/2 cup honey
1 tsp vanilla
1/4 cup plain yogurt
3/4 cup coconut flour
1 tsp baking soda
1 tsp lemon extract
1/2 tsp sea salt

The recipe I derived this from is found here and is for orange cake.  We made it as orange cake a few times and it was good.  I was curious what it would taste like if I substituted lemon for the orange.  Answer?  Super yummy cake that everyone loves.  We tried that marshmallow frosting a couple of times and found it was too sweet for our tastes no matter how little honey we added.  The cake is better all on it’s own.

4. Flatbread

WET INGREDIENTS:
12 eggs
¾ C oil
¼ C coconut milk
1t lemon juice

DRY INGREDIENTS:
1 C coconut flour
1 C almond flour
1 t baking soda
1 t salt

I found this recipe here but it looks like the webpage has expired so I’m recording the recipe here in case it suddenly disappears.

That was my baking for the day.  We had the lemon cake for dessert.  Everything else was sliced and stocked in the freezer.  One more baking session tomorrow should leave me in good shape to start the week.

Meanwhile, we’ve gone 3 days now with no ’emergency’ behavior meds.  He’s been calm and happy. Even the doctor noticed the difference when Adrian was there for a checkup last week. I’m usually doing an octopus impression while speaking to the doctor, getting pinched and pushed all the while.  This time Adrian waited calmly for 30 minutes in a packed waiting room (not the norm for this doc but they all have bad days I guess) and then sat quietly while I spoke with the doctor.

Over the course of the summer, the teacher was happy if they could keep the aggressive behaviors to less than 4 per day.  It didn’t usually happen.  Adrian’s already had 3 days of school without any aggressive behaviors. 

The difference is huge.  So much so that my husband and I are just sorta waiting for something bad to happen.  To think that it can stay this good would be a dream come true.  As my husband puts it, we’re cautiously optimistic.  We don’t want to risk disappointment if the spell is somehow broken here at one point.

But that doesn’t mean I’m not going to enjoy every minute.  🙂

 

September 8, 2011

SCD: Adrian’s Menu

I’m officially letting the SCD steal my blog for a bit. Cause yeah, this is HUGE for us. 

So what does a picky eater eat on this no sugar, no starch, no grain, no processed food diet?  Here’s what Adrian’s had to eat over the past two days:

YESTERDAY

Breakfast: a ripe banana and a piece of Banana cake (Individual muffins are too much work!  I bake it in a cake pan instead.)

Lunch: two medium sized chicken burgers (ground chicken seasoned up a bit) and a piece of peanut butter brownie for dessert 

Snack: a box of organic raisins

Dinner: pizza made with homemade pizza sauce and shredded Colby

TODAY

Breakfast: a ripe banana and a piece of Banana bread (we just baked it in a loaf pan and skipped the topping this time around)

Lunch: a personal-sized pizza (“leftover” – made last night and put aside for today) and a piece of cinnamon cake for dessert 

Snack: a box of organic raisins

Dinner: pan fried pork chop (he wasn’t very hungry and didn’t eat much so we didn’t serve sides or dessert)

 

TIPS

Lunches: Since Adrian prefers hot meals for lunch I usually try to make extra when I cook dinner so he can take leftovers for lunch the next day.  With most foods this works out perfectly and saves me having to find something new for lunch each day.

Pizza Sauce: Canned tomatoes and commercial pizza sauces are a no-no as I understand it.  We used Pomi boxed tomato product instead.   I added some legal spices (salt, oregano, basil, garlic, etc.) and then froze it in individual portions in ziploc baggies.  This way I don’t have to make a whole new batch of pizza sauce each time I make pizza.  Just grab a baggie and defrost it!

Muffins: As I mentioned above, I’m terribly lazy when it comes to muffins.  It just takes too long to fill them each, bake multiple batches and hope they come out of that little cup.  I always toss my ‘muffin’ recipes into cake or bread pans.  I can fit more into the oven this way and it’s so much faster!  I slice each into individual portions before freezing the whole thing.  This allows me to control the portion sizes as well.  For breakfast you want a bigger piece and for snack you grab a smaller one.  You can’t do that with muffins 😛

 

September 5, 2011

Diet Update

We’ve been doing the Specific Carbohydrate Diet (SCD) with Adrian now for 3 weeks now. 

It’s been the best 3 weeks in … well, a very long time.   These behavioral problems with Adrian stem back a good year and a half, if not more.  I’ve spent the better part of those 18 months feeling very stressed and helpless.  Not much of what we tried really helped much. 

I think it’s working. 

It feels better and, as I said before, that’s really the only thing I can base my opinion on.  No matter how subjective it may be.

Within that first week we had far fewer outbursts.  He was calmer.  We were able to get into a daily rhythm that was productive and satisfying for us both. 

This diet does not remove his OCD behaviors.  But it did significantly help the OCD over food.  That makes me wonder if it never was OCD but actual hunger brought on by the overabundance of sugar and carbohydrates in his diet.  Duh!  That alone makes this diet worth continuing.  That was a HUGE point of frustration in my life.  Gone.

We’ve had a few opportunities at this point to gain further evidence that there is a true reaction to starches and sugars.  The first did not come from food at all.  Adrian ate the sheet rock from a hole he made in his wall. The next day was horrible. 

I didn’t make the connection at first but his behavior was so different from what it had been that I kept thinking on what might have made the difference.  A quick search on the internet brought to light that sheet rock has starch in it!  I filed that in the ‘sounds strange but maybe possible’ explanations.

The next bad spell was this past weekend.  Adrian was terribly, terribly out of control Saturday and Sunday.  He was full on punching me, pinching and also attacking my husband. He destroyed cardboard that’s hung on the walls, untouched,  for weeks now.   It was abosultely devistating and very, very scary.  And that was after tripling the medication we’d had been using while on the diet!

The behavior started Saturday around 11am.  We’d already made the decision to get pizza, a big diet no-no, on Sunday.  First, because it’s the one food I haven’t been able to reproduce to his standard and he misses it.   We also wanted to do a ‘test’ before we send him back to school on Wednesday to see if there was a reaction.  We got our answer.  Heck, yeah, there is!

But that still didn’t explain why he was also nuts on Saturday.  I racked my brain and finally realized this afternoon that we gave him bacon on Saturday morning!  It’s supposedly legal on SCD in small amounts on rare occasions.  But I bought the wrong kind.  It was higher in sugar than it should have been.   I figured it couldn’t matter that much.  I was soooo wrong.

That means that every bad episode we’ve had in the past 3 weeks can be accounted for by his consumption of something not legal on the diet.  Sceptics will have to bear with me.  Come live my life for a bit and then you’re welcome to tell me I’m dead wrong.

Today we went back to the strict diet and, over the course of the day, Adrian returned to his calm SCD self.  It was strange to watch.  He tried to speak again – something he’s been doing a lot of on this diet.  He wrote and typed out a couple of messages for me.  Peace slowly returned.

Numerous times this evening we hugged and I told him how glad I was that he was feeling better.  This diet doesn’t fix everything but it absolutely IS the light at the end of the tunnel.  It’s making life livable again.  Praise the Lord!

August 22, 2011

Specific Carbohydrate Diet

Back when Adrian was 2 years old we gave the Gluten Free/Casein Free (GFCF) diet a try.  Within the first couple of weeks we saw improvements.  He was signing, making more eye contact and his behaviors improved.  The difference was quite noticeable.  There was enough evidence that we stuck with the GFCF diet for another 18 months.  At that point we slowly began adding things back in.  We saw no adverse changes so we went with a regular diet again.

The thing that stinks about doing these diets is that there is no way to know for certain if the changes you’re seeing are really from the diet or if they’re a product of something else in the environment.  And there’s always that possibility that the naysayers are right and we’re just seeing what we want to see.

But ultimately, whether it’s the diet or something else, real or imagined, if the situation feels better, then it is better.  It’s that simple.

We’ve had Adrian on the Specific Carbohydrate Diet (SCD) now for a little over a week.  And so, of course, the question is, “Is it working?”

For all the reasons I mentioned above I still don’t feel like I can answer that with any certainty.  What I can tell you is that it does feel better.  We’ve had fewer fits and when he does flip out, he’s calming down MUCH faster than before.  We’ve gone 3 days now with a decrease in our ’emergency’ meds. 

Beyond that, we’ve eased tension in one of the areas that was driving me crazy – the food seeking!  Every moment of the day Adrian was begging for food before.  And he doesn’t take ‘no’ for an answer!  It was a huge point of frustration for me.  He was always hungry and I was always trying to hold him off till the next meal/snack time because he was already consuming too many calories. 

Granted, that was totally my fault.  He had been on the LMD (Lazy Mom Diet) for quite some time.  As his appetite picked up, it was easier to just feed him the quick foods he liked rather than prepare completely separate meals and snacks for this uber picky eater.  Fish sticks, chicken patties, waffles, pancakes, goldfish, hot dogs, … lots and lots of horrible, carb-filled food.

On the SCD, all that is gone.  And all the protein that’s replaced the carbs means he’s not as hungry.  For that reason alone, this diet has improved our situation (not to mention his health). 

At this point I’m spending a good hour or two a day in the kitchen cooking and baking.  I don’t enjoy it, but I’m committed to giving this a full go.  For now, I have the time to devote to this so I’m just going to continue until a reason to change presents itself.

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