BBB AUTISM/AUTISM SOCIETY ONTARIO

(YORK REGION CHAPTER)

PRESENT

THE E-NEWS

 VOLUME 4; ISSUE 1                                                                              FEBRUARY 14, 2002

 DE-MYSTIFYING THE GFCF DIET

 Autism Interventions – Debate Rages On

Since I first started “surfing the ‘net’” to look for information and research on autism, I have come across a few topics that seem to push people’s hot buttons.  Autism Interventions, without a doubt, is in the top three.

On message boards and news groups, debates rage over which is best, which one works, who has the ‘magic pill’ this month?  Debate is terrific, it can help you see someone else’s point of view and lead you to try something that you may not have thought of before. Thoughtful debate can lead to empathy and tolerance a couple of really great qualities to have.

*****

The GFCF diet is a very popular intervention for autism.  Proponents believe that many cases of autism result from an immune-system dysfunction that affects the body's ability to break down certain proteins and combat yeasts and bacteria. Many parents are convinced of the validity of dietary intervention for autistic individuals.  Anecdotal evidence is, indeed, encouraging.

The purpose of this issue of the E-News is to present this topic in such a way as to de-mystify it.  We have some terrific contributions from guests about their personal experiences, which contain information to help you get a clearer picture.

This issue is not about debate. We are not presenting pros and cons, but we are including an article from a parent who discontinued the diet and why, as well as the reasons why you might want to start. Our featured contributor this month has generously allowed us to peek into his life and the life of his child as they live GFCF.  He has provided us with some great strategies and access to his personal journal, which details the “Changes in Attitudes and Changes in Latitudes” they experienced.

We are also thrilled to include contributions from authors Karyn Seroussi (“Unraveling the Mysteries of Autism and PDD”) and Lisa Lewis (“Special Diets for Special Kids).  These women have done much to help further research, while raising their own children with ASD, and they are an inspiration!

In talking to parents, who are our best source of information on this topic, we find that most of the children with the farthest measurable gains seem to be those who’ve enjoyed a nice combination of therapies, ones that have been enjoyable. 

When I look at all the interventions out there, particularly the ones that parents swear by, I notice that they seem to have a common element.  All have a great deal of parent involvement.  Maybe that’s the key.  Maybe taking a viable idea and adding your loving touch to it makes it that much more successful… J

I hope you enjoy this issue and will join me in thanking the wonderful families who’ve shared their stories with us!

Bee Cool,

Liz
 Contact us at  liz@deaknet.com

 Are you wondering if your child might benefit from the GF/CF Diet? Take a few minutes to answer these questions!

 BEE News Bits

Interested in Contributing to Upcoming E-News Issues?

Hi everyone!  We love to receive contributions from our subscribers!  Please take a look at the following list of potential topics and feel free to email us contributions.  These could be in the form of:

Some potential future issues are:

Send ideas to mailto:liz@deaknet.com

Attention: Subscribers in the Greater Toronto Area!

We are expanding our Beginner’s Guide to include clinics and private practitioners who perform diagnoses and assessments.  Please send us: (answering as many questions as possible)

 This will be very helpful to parents seeking a diagnosis. Please reply to mailto:liz@deaknet.com.  Replies are kept confidential!

Thanks!

BBB Autism and ASO York!

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The room is full of six year olds hyped up as only a birthday party can get them.  Balloons, streamers, party plates and bouncing balls decorate the hall.  Most of the children are shoving pizza in their faces, smearing sauce on their cheeks, making their smiles into clown mouths and washing it all down with soda.

One boy at the table is eating from a lunchbox.  He politely declines the offer of the pizza and chicken tenders.  He pulls out an expensive waffle with tomato sauce and something orange on top of it, looks kind of like cheese.  He eats one of the heartily and gets distracted by his friends.

Several minutes later a well-meaning parent clears the table of the food.  Unknowingly she has just thrown out an expensive meal for that boy, and the only thing he can eat in the entire room.  That boy is mine.

My son can't eat what others can.

He can't anything with wheat, oats, barley, rye or milk.   He is on the Gluten Free Casein Free (GFCF) Diet.

I am always surprised at people’s reaction to my son’s special GFCF diet.  “Isn’t that a lot of trouble?” “How do you do it?” “What can he eat?”

 “How can I not,” I reply.  If your child is sick, you give them medicine.  This is the medicine he needs.  I guess we have been doing this for two years now and it seems all routine, and really not that much extra work.

When we were first told about the diet, we freaked out a little, okay, a lot.  It seemed so dramatic.  After the detoxification stage, the majority of the extra work is done when we do our food shopping.   We have a separate area in our pantry where we store only GFCF foods.  He knows what snacks he can or can't have.  It really isn't an issue now.

The other thing to remember is that when you are cooking for a GFCF diet that you prepare everything in separate pans.  Cook the GFCF pasta while the pasta for the rest of the family is cooking.  DO NOT stir them with the same spoon.  This will cause cross contamination.

The attitude to take is to tailor several of the foods you will be putting on the table to be GFCF diet.  In our home, we try to all sit down to similar meals at the same time.  Just what makes up the meals is different.  This way, all you are doing is adding two or three small side dishes to your preparation.

It is somewhere between 5:30 and 6:30 am when Jonathan wakes up.  The house is dark and quiet. I think he likes the stillness. We have several GFCF cereals on a shelf in the pantry at ready access for Jonathan.    Fruity and Cocoa Pebbles, Corn Pops and several organic cereals made from corn and rice.  In the refrigerator, we usually keep two quarts of vanilla soymilk, chilled and ready for use.  WestSoy and Silk are two of his favorites.  He usually will help himself to juice while he watches TV or plays Nintendo.

Sometimes Jonathan will ask for several of his pancakes for breakfast.  We will make a quadruple batch of his pancakes made from Arrowhead Mills All-Purpose Baking Mix ahead of time.   We place the pancakes in freezer bags and they are marked GFCF pancakes.  This way he can even enjoy them as a snack in the afternoon, for dinner, or for breakfast without too many hassles.

As a rule, Jonathan carries his lunch every day to school.  This is a great help and keeps him from being tempted by “bad” foods.  His lunch will contain either a juice box or a soy milk box, a peanut and butter (Fleischmann’s margarine) sandwich made on rice bread or a Van’s Wheat free waffle, fruit cup or apple sauce container, and a sweet of some type, GFCF cookies or a non-dairy pudding.  We also provide him shelf stable snacks to have in his class at school for special and unexpected occasions.

When he gets home from school he usually has a snack, a bowl of cereal, a pancake or two or maybe some chips.   Dinners are more fun.  Tonight, we are having Fettuccini Alfredo with chicken and broccoli and garlic bread; nothing Jonathan could or would eat.

For his meal we will start by preparing the chicken.  The chicken for Jonathan is sautéed in a little Fleischmann’s margarine after being rolled in white rice flour or even your basic cornstarch.  The chicken is cut in to medium to small nuggets and seasoned with salt, pepper and poultry seasoning.  It only takes a few minutes, and his chicken is done and set aside.  The rest of our chicken goes into a bigger pan and is seasoned with some Jane’s Crazy Salt and garlic or garlic salt. 

Next, come the pastas and broccoli.  All three are put on the boil at once on three different burners.  Tonight , we are using corn pasta for Jonathan.  We will make sure to add extra water, so that the cornstarch will not make the water too thick.  As we are waiting for the water to boil, we will take some Fleischmann’s margarine in a small bowl and a little garlic salt into the microwave to melt along with a bowl containing some butter and garlic salt.  On a cookie sheet we place several slices of regular bread along with two slices of white rice bread. Each is coated with its garlic sauce and put in the oven to bake.

Adding the pastas and broccoli to their pans as the water boils; it is time to start heating the Alfredo and spaghetti sauces.  The Spaghetti sauce is one without wheat flour or modified food starches used as an emulsifier.  The pastas are strained in separate colanders placed in bowls and put on the tables. We have to make sure we wash the colander out first very well.  We have to make sure there are no gluten proteins on the colander. Then we strain the broccoli. When the Alfredo sauce is ready, we add the chicken and broccoli.

Tossing some cheese on our bread and soy cheese on his bread, the garlic toast is finished, as well as the rest of the meal. 

The key to these extra steps is having the meal planned out and all of the components available.  Do not be afraid to experiment.  Learn how to cook the GFCF foods.  Know what is GFCF and what isn't.  And then experiment.   Live and enjoy!

Read Ronald’s Journal by clicking here

What is gluten?  Gluten is the glue stick protein that you find in wheat, rye, barley, oats and malt.  It is what makes bread dough elastic and rise to be light and fluffy.  It is ideal for pastas. Any flour or starch extract from any of these sources contains gluten. Gluten is everywhere it seems.  It is in a lot of the foods we eat and do not even think about.  Many times, wheat flour is added to our gravies, soups, and other liquids to thicken them up as an emulsifier.

 Casein is an insoluble protein found in cow's milk and all milk products: milk, ice cream, butter and cheese.

Vitamin A is found in two different forms, solid and liquid.  Solid Vitamin A is different in molecular structure that liquid.  Your multi-vitamin and your cereal contain solid Vitamin A.  Liquid vitamin A is found in fish oils, like Cod Liver Oil.  I can feel you cringe reading that.  I did, too.

Being gluten free, casein free and a good source of Vitamin A are the most important things you can do for your child with Pervasive Developmental Disorder.  At first it seems like an impossible task.  When you read food labels for everything in the grocery store you will find wheat flour, milk products, sodium caseinate, emulsifiers, etc on the labels.  All of these food products must be removed from the home.

We started off making bread.  We also tried making bread from the blending of rice flours, starches and Xanthan gum.  I found the Oriental Grocery Store in town and they carry white rice flour, sweet rice flour, potato and tapioca starch.  These were 99¢ a pound to a $1.50 for the sweet rice flour.  Xanthan gum runs about $12 for half a pound.  Several of the loaves made from these combinations were edible but were far from delicious.

Next, we tried some of the store-bought mixes. We ordered several bread mixes from Miss Robens, The Gluten-Free Pantry, and picked several up from the local health food store.  These mixes varied in price, anywhere from $4.50 to $6.00.  Initially, we started baking the bread in the oven.  The breads where very dense and crumbly.  It was difficult to cut these in to sandwich slices.  The breads molded quickly, with about a four-day shelf life.

For Christmas, my in-laws bought us a bread maker.  This made making the bread easier, but it still had the problems with crumbling, molding, and slicing.  It also did not rise as well as the old fashioned way you make bread. Removing the loaf from the cooking tube was also difficult.  Either way, we were throwing out one loaf out of four.

I’ll never forget my mother saying, “Oh making bread is easy.” She went in and tried several of the tricks she learned from her mother to make the bread light and fluffy.  When it collapsed in on itself like a black hole, we threw it out and smiled at the loss of a $5 mix.

We finally found several frozen breads available at our local grocery store.   The store has a special foods section catering to organic and special dietary food requirements.  Food For Life has several wheat and gluten free rice breads.  This bread is kept frozen and has a shelf life of over 2 weeks.  I can tell you the exact length because it is eaten up well before it molds.   Each loaf contains about 15 slices.  The different flavors are White Rice ($3.59 a loaf), Rice Pecan Bread ($3.99 a loaf) and Rice Almond ($4.39 a loaf).  My son devours eats this.  We make cinnamon toast, sandwiches and use it for pizza.

Another commercially available bread product is the Van’s Wheat Free Waffles.   These waffles come in regular and apple-cinnamon.  We will make peanut butter sandwiches from the waffle.  If we don’t have any bread thawed, we even use them for pizza.

Recently, we discovered Arrowhead Mills Wheat Free All-Purpose Baking Mix.  This mix runs around $4.60 for a 24-ounce box.  We use this to make anything from pancakes and some cakes.  It is very easy to use, and everything turns out very tasty.  One day we made pancakes for my son and gave them to my daughter (who is not on the GFCF diet).  She thought they were delicious.  You should have seen the look on her face when I told her they were made from the GFCF mix. 

 There is a recipe for an orange cake that was very good.  Each box has a recipe book included.  This includes recipes for biscuits, cakes, waffles and pancakes.   We usually make a quadruple batch of pancakes and freeze them.  This allows us to give my son a pancake as a snack at anytime.

There are several different alternatives in pastas.  The two major choices are made from rice or corn.   Both are different in texture to wheat flour pastas, but both are tolerable.  The local specialty food store only had one brand of pastas on the shelf when I went to look.  The DeBoles brand provides both rice and corn pastas in Angle Hair, Spaghetti and Fettuccini.  The cost is the same,  $1.99 (U.S.) for an eight-ounce box.  There is also elbow macaroni made from corn flour available, $2.39 (U.S.) for a 12-ounce box.

It has been my experience that when cooking corn & rice pasta add extra water.  The water will get thick and soupy from the cornstarch and rice starch.  Remember cornstarch is used to thicken the juices from meats to make gravy.  It only makes sense that it would thicken the boiling water cooking the pasta the same way.

DeBoles Nutritional Foods Corporate Headquarters, The Hain Celestial Group, Uniondale, NY 11553

 The Journal Of Ronald E.

The purpose of this journal is to provide a written documentation to my son’s progress and to record my thoughts and feelings.

 My son has been diagnosed with PDD.  Over the last two years, labels to describe his difficulties have ranged from autistic to Asperger’s Syndrome.  We recently took Jonathan to see Dr. Mary Megson.  After a physical exam and looking at our family histories, Dr. Megson believes his problems result from improperly digested Vitamin A.

Vitamin A exists in two forms, a solid, which is in our multi-vitamins and our cereals and a liquid form, as found in Cod Liver Oil (CLO).  Both our children where recommended 2 teaspoons of CLO a day.

One of the things this journal is aimed at is to chronicle my observations.  The other objective is to give me a chance to express my feelings.  Let me qualify anything I write here by saying that I love my wife immensely; however, she does drive me nuts! J

Please note: You can access this entire inspirational journal here.