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GFCF Diet, Food Issues, Etc.
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The Autistic Spectrum

The GFCF diet means Gluten Free Casein Free.  We have recently started this diet (October 2003) and are relatively new to it. I am by no means an expert, but want to pass on some information and great websites that I've come across. This page is definitely a work in progress so please check back often for updates. :)



STARTING THE GFCF DIET

If you are like many people, you've decided that you want to start using dietary intervention in an attempt to reduce symptoms of Autism/PDD in your child. Most of us, however, do not know how to go about doing this in the most effective and safe manner. Obviously, as in any new treatment, some preparation must be made prior to beginning. In this article, an effective plan to implement the Gluten-Casein Free (GFCF) Diet is detailed, in hopes it will ease your transition to this type of treatment.

One of the first things to remember in beginning this diet is that your child's body is not used to the change. Many researchers and groups supporting the GFCF Diet feel that the need for foods containing Gluten and Casein act much like an opiate in the child's body. They become addicted to it, and therefore will go through a period of withdrawal when the diet is changed. Take it easy and start slowly, eliminating foods gradually to help ease them through this transition.

Begin by changing the diet one meal at a time. Breakfast is a good place to start. There are many gluten substitutes on the market which can be used for baking, etc., and these will make excellent meals such as pancakes, waffles, biscuits, and other breakfast items which will satisfy the taste and yet begin the process of weaning the child off of the gluten based products. Cereals which are based on rice or corn also work well in place of wheat based breakfast foods. Then add on other meals as appropriate until all meals are included in the diet.

Start the diet by removing dairy products (Casein) from the diet. Be sure to check the labels on products you use around the house for dairy products that may contain dairy products as secondary ingredients. For example, many products contain lactic acid. All lactic acid does not come from dairy products. It can be produced from potatoes or cornstarch. Make sure if the product has lactic acid listed on the ingredients that the source is not from a milk product.

Next remove gluten from the diet. Gluten is found in wheat and other cereal grain products. Again, be sure to check for gluten that is hidden in other ingredients that you might not think would contain it. For example, caramel colorings may contain this substance, as may such things as malted vinegar and many meat products, which could contain grain as a filler. It may even be included in products such as raisins, as a drying agent. Also avoid foods which contain "natural ingredients", since this term could actually mean anything. The consumer does not know what those ingredients are, so better safe than sorry. Keep in mind something that could "sneak up" on you. Often a product will say "New and Improved" and the change in the product may be the addition of the very ingredients you are attempting to avoid. The important thing to remember is that careful analysis of ingredients in products will help prevent including the very products you are wanting to eliminate in the diet inadvertently. The list of foods which could contain gluten is almost endless, so be sure to check carefully.

Once the diet is converted over to a GFCF diet, closely observe the child for signs of reactions to any of the products that you are using. The range of things that children can have reactions to is endless, so keep a close eye as you substitute, especially if you are using foods they haven't tried before. For example, foods containing peanuts or peanut oils may cause severe allergic reactions. Caution is the word when dealing with these products.

In considering the GFCF diet, consider the things that need to be done in order to successfully implement the diet. Some advanced planning can help you put this diet in place with a minimum of difficulty and help to insure that your child makes a successful transition to it.

GLUTEN-FREE FLOURS

Generally speaking, you should avoid wheat, rye, barley, and oat flours. There is some debate as to whether spelt, kamut, buckwheat, and millet also contain gluten.

Common flours used in this diet are brown and white rice, potato starch, and tapioca flour/starch. Other flours available are quinoa, soy, chickpea, and sorghum. They tend to be more expensive than the other flours, and have stronger flavors, although they can be substituted in small amounts for other flours.

USING XANTHAN GUM TO REPLACE GLUTEN

Xanthan gum comes in a fine powder. It is used to enhance a smooth texture, and to act as the "glue" in baked goods when gluten is removed. It helps to keep gluten-free baked goods from getting too crumbly.

When using xanthan gum, be sure to mix it with another flour before exposing it to liquids, since it does not mix well with liquids. (And if you spill it on the counter, wipe it up with a DRY, not wet, towel).

Guar gum is a similar replacement, but is rumored to be linked to intestinal difficulties.

AVOIDING CASEIN

Casein is milk protein. It is difficult to avoid, particularly since many "dairy-free" products (whipped toppings, creamers, etc.) contain casein. It is helpful for me to watch for the "Kosher" symbol on foods, making sure that they are not followed by a "D" indicating the presence of dairy.

Some ingredients to avoid are butter flavor, buttermilk, casein, caseinate, cheese, cream, curds, custard, hydrolysates, lactalbumin, lactoglobulin, and lactose.

REACTIONS TO THE DIET

Some parents choose not to go "cold turkey" by removing both gluten and casein from their child's diet simultaneously. Withdrawal is possible for those who have an intolerance to these proteins.

It is important to monitor what a child is eating, since other foods can prove to be a problem once the gluten and casein are removed. Often, it becomes apparent that a person is also intolerant to corn, soy, eggs, yeast and sugars, food dyes, etc. Keeping a diary or journal of the foods being consumed, along with behaviors observed, can be very helpful. Some fruits (apples, bananas, and citrus such as oranges) have the same effect on some children as gluten and casein do, causing difficulty with focusing and paying attention, and more frequent obsessions.

Many parents report a dramatic change in their children once they begin this diet. Others become discouraged when they do not see much of a difference. This may be due to their child's genetic make-up, age, the strictness with which the diet is followed, and the severity of their autistic behaviors (if the diet is being used with a child with ASD). It is generally felt that once implemented, the diet should be followed strictly for three months before determining whether it should be continued. This is due to the fact that although dairy can be eliminated from the system within three days, it can take up to 6 months for the gluten to completely disappear.

ACCEPTABLE NAME BRANDS

It is helpful to know which brand names are gfcf, including spaghetti sauces, milk and margarine alternatives, cereals, etc. Check the web site http://www.gfcfdiet.com regularly as they ingredients lists and products). Also, call a manufacturer to ask whether their product contains gluten or casein.

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From Living Without website (http://www.livingwithout.com/)

Autism, GFCF Diet (Gluten Free Casein Free Diet)
Autism is classified as one of the pervasive developmental disorders of the brain, it is not a disease. People with classical autism show 3 types of symptoms:

1. Impaired social interaction,
2. Problems with verbal and
3. Nonverbal communication

and unusual or severely limited activities and interests. These symptoms can vary in severity. In addition, people with autism often have abnormal responses to sounds, touch, or other sensory stimulation. Symptoms usually appear during the first three years of childhood and continue through life. Recent studies strongly suggest that some people have a genetic predisposition to autism. Researchers are looking for clues about which genes contribute to this increased susceptibility. In some children, environmental factors also may play a role.

Studies of people with autism have found abnormalities in several regions of the brain which suggest that autism results from a disruption of early fetal brain development.

Is a Gluten-Free and Casein-Free Diet (GFCF-Diet) of any help to people with autism?

Studies are suggesting that people with autism may suffer from a metabolic abnormality whereby certain foods are not completely digested. Gluten (the protein from wheat and certain other cereals) and casein (the protein from milk) have been identified as the main proteins not being properly digested. During digestion, proteins are involved in the production of amino acids called peptides. Some of these peptides are not sufficiently broken down in the intestines and are known to cross the gut wall into the bloodstream and some will reach the Central Nervous System (brain). There are suggestions that these peptides could affect transmission in all the systems of the brain and result in the symptoms of autism. These peptides are being interpreted in this instance as having a toxic effect rather than an allergic effect.

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GLUTEN GRAINS ARE A LEADING CAUSE OF MANY AILMENTS
By Dr. James Braly M.D., and Ron Hoggan, M.A.

Proactively Determining Your Risk

Gluten grains are a leading cause of many ailments. Avoiding gluten prevents and often reverses these diseases. Should you passively wait for the signs and symptoms of disease to arrive before taking action? There are many cases of apparently healthy individuals who seem to suddenly succumb to celiac associated cancers, autoimmune diseases, or other serious celiac-associated ailments, although there is little prior indication of the underlying disease.

Fortunately, there are rational alternatives. With the help of simple, affordable blood tests that are available to all health consumers, you can now determine your genetic makeup and the presence or absence of antibodies indicating gluten sensitization and celiac disease. In addition, armed with the information in this book, you can examine your own family and medical history for evidence of a gluten problem.

None of these sources can conclusively diagnose celiac disease or gluten sensitivity. However, the patterns formed by an orderly examination of information drawn from all of these areas will reveal your own unique risk of developing one or more gluten-induced ailments.

Information on relevant testing and when to eliminate gluten from one's diet will follow in later chapters. Understanding what signs indicate risk and how to evaluate your own unique pattern of risk is the most important first step toward preventing, arresting, and/or reversing gluteninduced illness. The cause of many symptoms and complaints often becomes obvious in hindsight, yet it remains obscure to those of us who still consider wheat to be the staff of life.

Self-Examination

In your search for clues and warning signs, the first place to look is within. You know your own moods better than anyone. You know your cravings or addictions. You know your own habits. You are probably more aware of your appearance and stature, too. Who could know your sleep requirements and energy levels better than you? And what about your perceptions, minor pains, abdominal bloating, and your susceptibility to colds or the flu? Each of us is our own best expert when it comes to ourselves.

Questions to Ask Yourself Now, Rather than Later

1. Is there anyone in your immediate family who is a proven celiac or is gluten sensitive?

Yes no

If yes, you are at high risk of having or developing gluten problems.

2. Are you or is any member of your immediate family a victim of an autoimmune disease such as insulin-dependent diabetes, autoimmune thyroid disease, or Addison's (adrenal) disease?

Yes No

All of these conditions are commonly found in celiacs and their family members.

3. What are your eating habits? Do you have food cravings?

Yes No

if so, what foods do you crave? if dairy products or foods with high levels of gluten are on your list, we suggest that you seek testing for celiac disease and food allergies. Because some of the partial proteins from gluten and dairy products can be highly addictive, if they are regularly absorbed into the circulation, cravings for these foods are cause for concern.

4. After meals, do you often feel bloated and uncomfortable? Do you have to loosen your belt? Is breathing more difficult? Is the bloating often associated with an inexplicable gain of two to five pounds within a twenty-four-hour period?

Yes No

5. Have you ever had one or more bouts of severe abdominal cramping?

Yes No

If you have celiac disease or gluten sensitivity, such cramping can sometimes be so severe that it leads to shock. In such cases there is always a gluten-induced potassium deficiency, often accompanied by magnesium and/or calcium deficiency.

6. Do you have strange or addictive reactions to alcohol?

Yes No

Either may also signal gluten sensitivity. We know that alcohol causes and aggravates a leaky gut; many authorities believe that a leaky gut is a common cause as well as a consequence of food allergies and gluten sensitivity.

7. Are you a smoker?

Yes No

A powerful tobacco addiction can also signal gluten sensitivity. Smoking can amount to a form of neurochemical "self-medication" for those who have problems with gluten. Smoking delays diagnosis and allows the progression of the disease. Such addictions are very difficult to break because quitting means more than simply dealing with the fleeting experience of withdrawal. It will bring about a reduction in general health and, in many former smokers, major depression-which will persist until the underlying problem with gluten is diagnosed and treated.

8. Do you struggle with anxiety and/or depression?

Yes No

These are common signs of gluten sensitivity.

9. What about your visual perceptions? Have you ever been sitting quietly, staring into the distance when things appeared much more distant than is possible? Or maybe they were distorted?

Yes No

If you have had such sensations, you may well have a problem with gluten.
10. What about your sleep habits? Do you usually have difficulty getting to sleep?

Yes No

11. Do you have an excessive need for sleep?

Yes No

12. Are you disoriented and confused when you awaken?

Yes No

13. Do you have to get up frequently during the night to urinate?

Yes No

14. Are you, or have you ever been, a bed wetter?

Yes No

Such patterns suggest a problem with gluten, dairy proteins, or both.

15. Do you often have difficulty finding the energy for life's daily demands?

Yes No

Your body may be giving you an early warning. Lethargy of unknown cause is another common sign.

IMPORTANT SIGN OF A PROBLEM WITH GLUTEN

Several physical features, including your height and weight, can identify significant risk factors. People of below normal height, and especially children in the lowest 10th percentile, should, in the absence of a solid medical explanation for their stature, consider testing. Because susceptibility to the hazards of gluten is largely genetic, even where short stature appears to be a family trait, the possibility that gluten is an underlying cause in all family members should not be ignored.

Short stature and growth retardation can provide important warnings. Just as reduced stature was part of our ancestors' transition to agriculture, growth stunting continues to be a factor in celiac disease. In fact, half of all young celiacs over the age of two years are short compared to their peers.

There are many reports of short stature in connection with undiagnosed celiac disease. Some groups report rates of undiagnosed celiac disease in about one quarter of the subjects studied. Others report that as many as half of the individuals of short stature, when the cause of their short stature was unknown, have been diagnosed with celiac disease when tested. Little wonder that these researchers repeatedly urge testing all people of short stature for celiac disease. Even where growth hormone abnormalities are found, celiac testing is warranted because gluten can suppress growth hormone release.

OBESE CELIACS NO LONGER A CONTRADICTION

Obesity is another warning sign that gluten may be at the root of your difficulties. Despite the long-standing perception that celiac disease leads to frail, wasting, undernourished individuals, there are more obese and overweight celiacs than underweight. This is revealed through random testing for celiac disease.

Source: http://www.healthypath.com/HT/GlutenTest.asp

GFCF FOOD
 
You'll find that you may need to order certain items for this diet from the internet. However, make sure you check your local grocery and health food stores first for products and compare pricing. Sometimes it's better to pay a slightly higher price at your local stores than order online and pay the same price PLUS shipping. Our local WiseWay has a great Health Food Section where I can get most anything we need. Meijer's also has many items at reasonable prices. Some other chain stores will have certain items you need but you may need to ask as some don't have a designated "health food" section. Just a hint on pasta: Tinkyada noodles are the absolute best you can find. I've tried them all and these are by far the best. For spaghetti sauce, we use the McCormick Spaghetti pouch with Hunt's products such as canned diced tomatoes, tomato sauce and tomato paste. Most canned/bottles sauces have soy which is something we're avoiding. For milk substitutes, PLEASE be careful with Rice Dream as it DOES contain a small amount of gluten. I liked the Pacific Almond but my son did not. He really likes Vance's Dari-Free. This is a potato-based substitute. We have to order this online but hope our local HFS will start stocking this on a regular basis.

Since 1999, this website has been a free resource for any parent who needs support implementing the GFCFDiet. It provides a central location for parents to find other parents who are also using Dietary Therapy. It provides lists of products to help guide you through the grocery stores and other relevant information which will assist every parent using the GFCFDiet.

Beginning The GF/CF Diet

GFCF Diet Lists and Contacts For The UK.

Great site with GFCF info and much more.

Implementing the GFCF Diet ~ Hints To Help Ease the Transition

TACA - This page provides information for parents regarding a balanced, allergy elimination diet.

 

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Food Issues for Independent Autistic Adults

Prepared for Autreat
June 24 through 27, 2002
Brantingham, New York

By Patricia E. Clark
Narrative

Introduction

Food Phobias

We begin with the fact that many autistics have very limited or idiosyncratic diets. Reviewing a recently published book, Cant Eat Wont Eat, illustrates the extent to which this is considered a problem by some people. It also gives the best approach for long-term benefit. As with any individual difference between people, there is no "solution," and a certain amount of the "problem" lies in the beholder. This presentation is put together from the point of view that we like what we like, and that education in nutrition, food preparation, and phobia extinction will increase our ability to feed ourselves in a nutritionally good way. Some items such as recipes are included partly to help people "get used to" the idea of alternate dishes they "could" be thinking about eating "sometime later."

The Grocery Store

How do you remember what to buy while you are at the store, faced with lights, noise, bewildering visual merchandising efforts, and exertion?

Where ARE the items you want at the grocery store, and why do they put them there? Is there any pattern that applies to most stores, so that you don't have to wander aimlessly for hours every time you enter a new store?

These and other questions about the American supermarket will be answered fairly completely.

Pantry

This is an explanation of why people keep extra "staple" food in the house, not just what they will eat for today. There is also a list of some foods that most people use in day-to-day cooking and that keep well. Most are canned or dried, but there are some listed for refrigeration or freezing.

Motor Planning and the Independently-Living Cook

After you get the food home, then what? All that food has to be sorted, packaged put away, chosen, prepared and/or cooked, then eaten. What a group of chores. Some food preparation problems I have faced are forgetting to turn my feet when I reach sideways to pick up a heavy pot, and missing the pan when I turn over a pancake. The short workshop at the end of the equipment discussion on learning how to analyze and "make the moves that make the meal" could be helpful.

Basic Equipment needed for food preparation

This is a list of standard or standardized cooking equipment typically found in homes in the USA. Having all the basic equipment will make food preparation easier. Having equipment that is similar to what most people have will make it possible to decrease the misery of learning to cook while traveling or camping. I was surprised to see what a compact assortment of tools is actually necessary to prepare and eat meals. This list is what I actually have in the car with me for camping and preparing my own meals at Autreat.

The Basic Practical Kitchen

Points such as amount of counter space, arrangement of appliances, storage and cleanup are addressed briefly.

Vegan and Vegetarian Issues

Many of us are vegetarians or vegans, or "want to be," or are working toward the goal of vegetarianism. References here provide information for transitioning to that diet, and about the nutritional value of foods, and how to buy bulk foods (which may be cheaper and healthier than highly processed foods or those in small containers). Relatively simple vegetarian recipes that use a variety of staple ingredients are included as handouts. One subject covered is calcium and bone strength in relation to protein ingestion recent study that reverses the idea that high protein diets cause calcium loss.

A comprehensive web site on vegetarian philosophy, a dictionary of definitions, lists for possibly-unfamiliar vegetarian items, spices and other diet-related information is listed as a reference.

Gluten Free?

Then we come to the issue of the Gluten Free diet. I prefer to see it as the Celiac Diet, because I have Celiac Disease, which is terminal unless treated by following the Gluten Free diet.

There are no philosophical issues here. If you are gluten intolerant, malnutrition and autoimmune disorders will consume your life. The diet is not optional in that case.

I do not have any statements to make about the diet for people who definitely do not need it, except that celiac disease is underdiagnosed in this country. Some people have it without knowing about it. It seems to be true, according to my research, that celiac disease, type II diabetes, and autism tend to occur in the same general population. So in my opinion, its a good idea to entertain at least the possibility of having inherited those tendencies together.

The preliminary tests for celiac are for IgA levels in the blood. This is not the same type of reaction that is tested when allergies are suspected. Those tests are for IgG.

There is als reference to what I consider surprising new research reported in the New York Times regarding previously unacknowledged symptoms of celiac disease.

The Glycemic Index

The Glycemic Index is replacing the rhetoric about simple carbohydrates and complex carbohydrates. This new way of looking at carbohydrates is all about their actual metabolic effects on blood glucose levels, fatty acid availability, and cholesterol levels. I have included an explanation of what the glycemic index is about, a short list of a few foods' glycemic levels, and how to get a complete listing from the internet. The issues addressed by adopting low-glycemic-index foods seem to directly affect the possibilities of decreasing some "inevitable" problems of aging.

Additional Items

Nutrition Overview - issues observed and treated in children. Because I found two of the treatments suggested here to be extremely important to my ongoing functional level, I have included this for anyone who cares to see it.

Internet web sites for:

Dictionary definitions and lists for possibly-unfamiliar vegetarian items, spices and other diet-related items
Information related to gluten sensitivity
Information about how motor control issues present themselves and how they are treated

Food Phobia

"Can't Eat Won't Eat" book

I'll start out by referring to a book about eating issues. It's "Can't Eat Won't Eat, Dietary Difficulties and Autistic Spectrum Disorders," by Brenda Legge, published by Jessica Kingsley in the United Kingdom.

The book begins with page after page of descriptions of the authors bizarre and inadequate attempts to get her child to eat a generalized British diet. There are a lot of British words, and I don't really understand exactly "what" some of the foods referred to are. I got the impression that they were sweet puddings and other items that I liked in my childhood.

There is an entire chapter on "Who to Blame" for a child not eating, and another chapter on ways of bribing them to eat. A sense of desperation on the author's part is conveyed by statements such as, "I am still searching for a diet book that will sanction the use of an intravenous drip at mealtimes." She consulted a dietician, who told her that her child's basic diet was a little low on calories and on a couple of vitamins, but that overall it was adequate.

Further, her description of parents cooking Cordon Bleu-level delicacies and presenting them in vast quantities over several years to tiny autistic children with 6-item diets struck me as quite funny.

Still, it felt good when I saw the research. It helped me in deciding what to emphasize in putting together this presentation. I aimed to concentrate on getting the most enjoyment and food value from you what you DO choose to eat.

In structure, this book is mostly an introduction to the problem of limited diet, with descriptions of "cases" in which the child eats the fewest things and the parents are the most distressed and determined. In the late stages of the book there is information that I felt was useful and true.

That information was that schools and researchers with the most experience (and most success) in the field of picky child eaters agree on a few facts. The first is that fear is a part of the picky eating "problem." There is an absolute sense of being afraid of the items that are rejected. Also, in a high proportion of food aversions, it is the sight of the food, not the taste or smell or texture, that provokes the fear response. There are ways of desensitizing people so that the fear response decreases over time WITHOUT forcing difficult experiences on them. Generally, when children are presented with the smell, taste and texture of a strange-looking food over a long period of time, without pressure, they become used to it and the fear subsides.

In the end, the author says that a heavy-handed approach is not the way to go. Parents tend to see food issues as a disciplinary problem, but to the autistic there is often no feeling of choice about the behavior.

Well, "why" would anyone want to desensitize themselves or another person to a food fear? Because it is becoming more and more obvious as research continues that eating a wide variety of foods, especially vegetables and fruits, is the most basic step in achieving and keeping good health during your entire lifetime. Desensitizing is an established procedure for people who are afraid of open spaces or flying, and want the freedom to go everywhere. It can be a humane way to approach food fears. And there is no doubt that good health enhances one's life experience. Since our lifespans as autistics are roughly equivalent to the nearly-80-year expectancy of the neurotypicals among us, we need to pay attention to the possibility of decreasing age-related deterioration. It is already hard enough to be productively happy if one is autistic.

On beyond the fear factor, some people have food sensitivities to deal with. These can range from mild itchiness to the slow deterioration in health of celiac disease and to sudden anaphylactic shock and instant death. So, sensitivities to food must be dealt with. Downplaying them or refusing to acknowledge them are not viable options.

DESENSITIZING/EDUCATIONAL EXERCISE: SHOW SOME DIET, ALLERGY, AND ETHNIC COOKBOOKS FROM MY PERSONAL LIBRARY SO PEOPLE CAN BROWSE LATER

To learn specialized cooking that avoids certain foods, I would advise just "biting the bullet" and going to a large bookstore in person to see what the "diet" and "allergy" cookbooks are like inside. If you personally check these, you can see if the philosophy, ingredients and techniques of the books will fit into your lifestyle. Newspaper accounts rhapsodizing about the gourmet qualities of cookbooks seldom mention that most recipes have 27 or more ingredients, or that the average price per ingredient is over $6.00 per pound. We need something far more basic on a daily basis.

I have even looked at cookbooks that promise no more than five ingredients per recipe, but they looked supremely boring. It's hard work to find a cookbook or two that really fit you, but they can make a big difference in pleasure and performance.

Why Spices?

The emphasis in food issues for autistics would seem to be on getting the same taste each time. But there are good reasons for investigating spices:

As additional plant materials in the diet, they may add tiny amounts of important nutrients.

Their presence may change some unappealing foods into foods that you want to eat, thus diversifying your diet.

As we get older, our sense of smell and taste decrease. Increasing the taste and smell of food can help older people continue to eat in a healthy way after the foods they loved in their earlier years no longer appeal to them.

As autistics, we probably have as long a lifespan as anyone else, meaning that we will eventually have the problems of "normal aging."

There are more spices and flavors than those listed on the referenced pages at http://www.vegez.com. The main thing to keep in mind is that they are neither good nor bad. They are just possible sensory adjustments for food.

I found -- to my surprise --- after being introduced to Indian foods during the past five years, that I sometimes like very heavily spiced food, if the combination is pleasing to me, and if very little of it is hot peppers.

Shopping for Food
(Grocery Stores)

Shopping in the Grocery Store
Part of this discussion is based on material found at http://isd.saginaw.k12,mi.us/~mobility/grocery.htm The paper is not signed or attributed to any person. The stated purpose of the unorganized notes there are to prepare caregivers to teach the disabled how to shop. The remaining information is from my 40 years of personal shopping experience

Getting Help/Being Accepted

There is no better way to get help with shopping than to introduce yourself to the manager, and explain your needs. Right, I agree that this doesnt seem at all natural. But when you compare the effort involved in a three-minute introductory session to all the effort of finding everything in the store by yourself, and perhaps enduring the stares of grocery clerks who are speculating on why you behaving strangely in their store, I think its a good trade-off. You dont even have to talk, if you have some kind of introductory letter stating that you have trouble functioning visually and getting around (or whatever your particular weaknesses are).

If you can shop very early in the morning, or after 9:00 PM, store personnel may be able to assign a spare bagger/service clerk to help you shop. You should be able to just show them your list, with no talking required, if they already know you by sight. I usually pick up what I feel I can deal with off the shelves, and then circle what is left on my list. Then I hunt for a clerk positioning cans (figuring that, if he puts the items away, then he knows where they are), and ask him about the locations of the remaining items on my list. If there are three or more left, he generally gets up and leads me to all of them.

To avoid having to answer the perky, cheerful "How are you?" from a checker, you can ask your helper to teach you to use a self-checkout station in many stores. After being instructed three times, I found I could use one of these well enough to keep from alarming the clerk in charge of the area. My favorite store (next to my house, and very customer-friendly) does not have automatic checkouts. I have memorized a few phrases that seem to satisfy them and stop the checkout chatter fairly effectively. Also, just a grimace/smile will occasionally do the job.

After your first introduction at the store, and occasionally (like once or twice a year) after being helped a lot, it is good to write a short "Thank You" card -- only a sentence or two --- to the staff. This inclines them to continue helping you the best they can. They receive a lot of criticism from strangers, and a little kindness gives them a big boost and puts them solidly on your side. You could even enclose a photo of yourself so that they will recognize you when you come in.

Click here to see a rough map of a typical grocery store layout.

If you are shopping by yourself, understanding the logic of how the store is laid out may help you find things. Then you can be working from "inside yourself." You will not be at the mercy of sensory input and visual merchandising schemes.

When you first enter a grocery store, you are often confronted with the flowers and expensive gifts section. Psychologically, this is intended to put you off-balance. It takes your mind off your carefully-prepared shopping list and loosens you up for impulse and luxury purchases. The trick is to steer straight on through it, to the next section: fresh produce and unprocessed foods.

Stores put certain things around the perimeter because this is the highest traffic flow area. They discovered this by making serious studies of the subject. Therefore, they have put the foods with highest on the perimeter, where more people will pass by them. The foods involved include fresh produce, meat, dairy, and frozen foods such as ice cream.

The look of fresh items as you enter the perimeter of the shopping area gives you a strong "fresh" image of the store.

Meat is usually at the back. It accounts for about one-fourth of all items sold, and it therefore draws shoppers past other food displays as they go to the meat counter.

Customers think in categories, so foods are arranged in categories in the store. For instance, canned mushrooms, canned olives and other pizza ingredients will be near each other. Sugar, spices and cooking chocolate are grouped near one another. And salad dressings are grouped near displays of cooking oils and assorted vinegars. Peanut butter is next to jams and jellies.

You can memorize these matchups or fill them in on a map or plot of your regular grocery store to make shopping easier.

Different items have different drawing power. High drawing power items are scattered throughout the store to pull people to their locations. Then items with little drawing power will be arranged around them in an effort to sell them as well.

Laundry soap will be surrounded by clothing treatment options and dryer products, for instance. Quick cake mixes may be accompanied by cake pans designed for special occasions.

Saving Money at the Checkout, and Oops! Why am I here?

Many stores now list Unit Prices. In my favorite stores, these are "per ounce" or "per quart" prices, that make it possible to compare "real prices" among products that differ in package size or weight.

With modern electronic checkouts and inventory management, it is possible to download coupons from the internet or just clip a handful of them, then hand them over to the checker before the individual items start being scanned. The computer will automatically match them up to the merchandise. The main problem with coupons is that most of them are for highly processed foods, which I rarely use.

Generic (store) brands are often just as good as any Brand Name item. Case in point: I know I can eat ONLY Hellman's brand mayonaise. But the Publix store-brand mayonaise looked "safe" to me when I read the ingredient list. I phoned them, and got a return call a few days later -- yes, the store brand is Gluten Free. So now I pay $1.99 for Publix mayonaise instead of $3.50 for Hellman's. At home, we just love to eat easily-prepared foods like carrot-raisin salad, tuna or chicken salad, and coleslaw. The main effort in these is mixing in a dollop of mayonaise with a bit of seasoning and a few chopped or grated items.

There are certain things that I buy nearly every time I shop. These are eggs, milk, bread -- the usual items that are used every day. For things that I don't buy each time, I need a list or I forget them. I keep a 3x5 card and pen between the sink and stove, and write down each item as I use it up in cooking (or as I open the next-to-last container of it). My list is ready for me whenever I decide to go shopping.

When I have sensory overload, am shopping in a new store, or have an especially long list or exotic ingredients, I organize the list so that items that will be located in similar parts of the store are on the list together. I also have to cross off each item as I pick it up if the list is very long.

Long ago, I got a small household allowance once each month. I had to buy enough food to last the entire month with it, or go hungry the final few days. I worked out a system then that others might be able to use.

I knew I prepared three meals each day times 30 or 28 or 31 days. I would go through the store with a paper with the thre daily meals listed, and write in a tally for each one that I bought.

I knew how much flour, eggs, milk and some staples I used each month "normally," so these weren't included in the tally.

But for meat, vegetables, cereal and many other items I put tally marks down until I had enough to cover the entire month. At the same time, I used a "clicker" to add up the cost. If I was running out of money faster than I was running out of list, I would just buy a lot of macaroni and cheese mix, which was cheap in those days, and also rice and beans.

I have always tried to buy cheaper off-brands if they worked as well as name-brands, and I try to shop in at least one other store besides my local grocery in order to save money. We already talked about the generic mayonaise, but WalMart (and some other discount or warehouse store) brands are another case where you can save a lot. When tuna was 90 cents in Publix, I bought the same kind for 52 cents at WalMart. I buy Tussin there for 1/3 the cost at a pharmacy, dog food for 1/3 the cost, and bras - yes bras!! - for $6 instead of the minimum $12 to $16 they would be anywhere else.

Visual overload is a terrible thing at WalMart, but I have been shopping it consistently for years. I find that their floor layout is similar everywhere. By memorizing the locations of the things I need in my local, favorite WalMart, I am able to get through the shopping with very little damage to the rest of my day. I grab a cart, push it in the direction of the item I want to buy, and dont look at the individual displays until I get to the proper aisle. I have to admit, though, that I was overloaded and dizzy for hours the first time I walked all the way through the store to see where everything was and what they carry.

When there isnt enough time, or you are already exhausted

When you run out of food and simply cannot face a regular shopping trip, or haven't time before you melt down from hunger, there are a couple of possibilities.

I have been known to go in, buy one apple at the quick checkout, eat it at a table in the store or back outside in my car, and revive enough to do some minimal shopping.

Alternatively, I walkin and make a beeline to one specific place where I know I can get enough to cover a meal or two, for the rest of the day. There is a possibility that you will be more able to shop the following day. For my Minimal Quick-Shop expedition I am thinking of something like: run to the left at the entrance, up the junk food aisle. In my store it has raisins and nuts in it. Then make a right at the rear isle and stop for cheese or for soy yogurt (it's right at the end, so I don't have to look at anything on my way there). A sudden right at that point takes me past the canned foods, where I can pick up 16 ounces of canned pumpkin that I can spice up with what I have at home. The result is a potentially full tummy in all of two-and-a-half minutes of shopping. If I get there early in the morning, no one else will be in the store, and I can get twice as many things for the same price in overload.

I have been known to physically collapse while standing at the checkout, but I have never collapsed in a shopping aisle of the store. Once you get as far as the checkout stand, in my experience, store employees will do ANYTHING necessary to get you paid and out of the store with your groceries. Knowing you will get help from at least the checkout on may convince you that a quick trip might just be the answer if you are completely out of food. Its not always possible or wise to try to shop for a week or a month.

When I lived in Arizona, it was an 80 mile round trip to the grocery store, and I didnt have the luxury of making quick trips. Thats when I perfected my grocery listing abilities, keeping the list available and visible at all times while working in the kitchen.

As for getting groceries home, I have used a backpack and walked to the store and home every day for small amounts, when I felt well enough to walk (and lived in a city). Otherwise, you really need to get a taxi or have a car available. I tried a grocery basket like you see the old ladies pulling in inner cities, but the handles are too short for my height, and I felt all twisted trying to pull it with one hand. I can't steer it well enough to push it ahead of me.

Cooking the Food
(Motor Control and other issues)

Motor Control and Dyspraxia

Valerie dejean has a series of web pages giving the history of research into motor control issues at
http://www.his.com/~spectrum/history.html

She tells us that motor planning, or praxis, is "the ability of the brain to conceive, organize and carry out a sequence of unfamiliar actions."

It is thought to be "a single function involving three basic processes:

"Ideation or generating an idea of how one might interact with the environment.

"Motor planning, or organizing a program of action.

"Executive, or the actual performance of a motor act."

Researchers at Howard Hughes Medical Institute (HHMI) studied eye movement in relation to high-level planning of body movement.

The idea of "gain control" came up in relation to this. When subjects eyes watched small movements of stationary light spots, their eyes made small movements pinning down the locations. However, when their eyes watched perturbations of light spots that were moving, their eyes swung widely in response to the change in movement. The motor movement was adjusted to the amount of control needed. As things slowed down, the movements decreased in range.

"Even walking would be impossible without" this gain control mechanism, according to investigator Stephen G. Lisberger, of the HHMI, "because muscles normally react to stretching by contracting. The brain compensates for this natural tendency by adjusting gain control of muscle contraction to allow the legs to take steps without activating a reflexive contraction." If the gain control and compensatory systems do not work properly, then muscle movements can be erratic and unpredictable.

The same control mechanism seems to apply to the issue of muscle movement when working in a kitchen.

If you reach for a single fixed object, the thought brings out fairly small movements in terms of eye movements or muscle twitches of the person doing the observing. However, using your muscles to control something that changes or moves may provoke larger movements that are harder to control.

In my mind, dealing with something that is cooking is also dealing with a moving object. Its state is changing. I have to catch it and manipulate it at the optimum moment(s) for best results, or it can get away (burn up). I feel anxiety when I am dealing with cooking items, and I tend to over or under move. This results in my having accidents in which I bang a utensil against the side of the pan instead of putting it inside to stir, or turning over lifted food on a spatula and dumping it onto the stove top instead of back into the pan.

I also have trouble working with several food bowls organizing food being prepared, or with chopping or otherwise preparing many ingredients "at once" before cooking or serving them. My hands want to reach for all of them at the same time, rather than carefully pick up each container, prepare the contents, and add the items at the right time. This can result in my suddenly pushing my hand "at" one of the bowls, knocking it sideways, rather than reaching for it.

Food cannot be in the pan, on the stove over the flame, and also be remaining the same. It is changing rapidly, and therefore harder to deal with than food that stays still and waits to be chopped. One thing you CAN do, to help deal with this situation, is to ensure some similarity in the cooking situation each time. It helps to have the utensils and foods you work with, and the arrangement of the cooking area, be familiar. The more you can stick with a familiar routine, the more familiar and stable the situation is, the better you will be able to stay calm and deal with the changing condition of the food.

The same equipment
The same ingredients
The same methods
The same end result

I do try out new ingredients and new recipes, but its terribly difficult to do this in a new location, with unfamiliar kitchen arrangement or utensils. My recent move to another state and a different kind of house resulted in about two months of extreme anxiety and repetitious menus while I got used to the arrangement of the kitchen, the unfamiliar equipment, and the storage limitations. This has to be a built-in functional limitation in me, as I have been an absolute gypsy during my lifetime, living in about 30 to 35 different places. Working my way through changes has never gotten any easier than it was when I first began.

REFERENCE
http://www.dyxpraxia.com.au

We can try to adapt strategies which transfer to the kitchen, rather than to the classroom as originally intended by the many "how to" motor training programs advertised on the web.

A few concepts can help us find ways to make learning less stressful:

1. Work from simple to complex movements.

2. If you fail, accept failure. It's part of the learning process. Rather than criticize yourself for making errors, look at the effort involved, not just the outcome.

3. Many cooking "errors" can still be eaten.

If your problem is flipping pancakes, break the movements down into steps:

Pick up the spatula
Twist the spatula until the top of it is facing "up"
Place the edge of the spatula under the edge of the pancake
Give it a small, tentative push across the pan, to see if the pancake is cooked enough to "let go" of the cooking surface
If the pancake lifts itself easily onto the sliding spatula, give a quick thrust of the spatula underneath it (this is somewhat like yanking a tablecloth out from under the place setting quickly enough to leave the plates and silverware in their original positions).
Take a deep breath now. Calm yourself again. The pancake is now up in the air, unable to change (cook) until you put it down again.
When you are ready, quickly twist the spatula 180 degrees (rotating it on the axis of the handle, not pushing it sideways) and let the pancake fall off it so that the uncooked side is down, against the hot pan.
Time for another deep breath, as you wait to pick up the finished pancake in a minute or two.

Keep to set routines. Practice the small steps. Allow plenty of time, especially with a new skill.

Practice leads to progress through little steps. Even Julia Child had to attend school before she could begin to cook.

The Basic Practical Kitchen

My kitchen expertise comes from 50 years of reading womens magazines such as "Ladies Home Journal" and "Better Homes and Gardens," in addition to having lived at about 35 locations (houses or apartments) during my lifetime.

The minimum amount of counter space that will just barely do for from-scratch cooking is about two feet on one side of the sink, about three feet between sink and stove, and about two feet from stove to refrigerator. That is not a "good" amount, though. The center space should be more like four or five feet to really spread out and not have to keep desperately cleaning up between each step of the preparation.

The modern tendency to have open kitchens with few upper cupboards is counterproductive. You end up having to buy a standing cupboard or use a pantry that is away from the preparation area. This just makes things more complicated, and adds a lot of walking and turning around to the work of preparing food and cleaning up. The closer everything is to the point of use, the better off you are.

I keep utensils like tongs and stirring spoons in a container next to the stove, and spices on an open shelf reachable from both the chopping/mixing area and the stove top. Dishes are stored next to the dishwasher or sink for quick putting away. Pans need to be near or between the preparation and the cooking area.

As for cleanup how clean is "clean?" If I dont see any food available for bugs to munch on, then I have done a good job for the moment. Periodically I have to scrub down cabinets and wash the floor, degrease the oven vent in the back of the stove, and so forth. But I wouldnt think of doing that every day. No visible spots on the counter or in the sink, and no sticky feel, spells clean to me.

Having a dishwasher is helpful, because you can put your teakettle and other grime-catchers in there periodically, which easily removes the greasy film that accumulates on anything kept in the open in a kitchen. Dishwashers are noisy, but you can plan to turn one on and then go to another room or outdoors until it is finished.

I have read many times that dishwashers with the heating cycle turned off dont use more water or electricity than hand washing. This might even be true, but Im skeptical.

Working on Motor Problems
Discussion and Practice

~ What function is causing problems?
~ Analysis of movement "made" or "not made."
~ What parts of the movement can be isolated and practiced?
~ What else can be done to make this task easier?
(for instance, always arranging equipment the same way before starting, or having a 3x5 card on hand to remind you of the steps involved and the things likely to be overlooked a "Recipe for Action")

Vegetarian and Vegan Issues

Food issues for autistics often take the form of a vegan or vegetarian diet. This can be due to sensory issues or else a conviction that vegan is the only "right" way to eat, for philosophical or environmental reasons.

Vitamin B12 for vegan eaters

People who eat a vegan diet without supplementing vitamin B12 run the risk of getting a serious deficiency disease: pernicious anemia. This, plus nervous system damage, can also be caused by malabsorption due to undiagnosed celiac disease (gluten enteropathy) even in non-vegans. Vegans who can eat wheat, rye, oats and barley can supplement their Vitamin B12 intake with ordinary breakfast cereals or bread. Vegans with celiac disease need to research what sources of vitamin B12 are available to them. The two handouts on this subject provide some options.

The Gluten Free Diet

The "Gluten Free" diet seems to be a fad among parents of autistics.

Aside from that fact, Celiac Disease is a serious, disabling, even fatal, condition, that can be treated only by completely avoiding all wheat, rye, oats and barley for life.

There are ways to diagnose Celiac Disease. If you do not have it, trying a gluten free diet is completely optional. If you do have it, it must become the first priority of your life.

Dozens of links that explain every aspect of celiac disease can be found at the web site
http://www.gflinks.com/~donwiss/gflinks/

Material available includes the genetic basis of the illness, its signs and symptoms, and lists of gluten free foods that can be bought in grocery stores. Articles on how Celiac Disease presents itself, and some of its effects, are included in the "Information" section of this presentation.

There is also an email list of people who trade information they have obtained from manufacturers about the gluten free status of foods. Information about that is found at the Don Wiss web site listed above.

I have been eating exclusively gluten free for the past six years. I will happily go into baking techniques and other technical aspects of getting along without the European grains if anyone present is interested.

The Glycemic Index

Glycemic Index and Exercise Metabolism

This information is from an article that appears on the Gatorade Sports Science Insitute (GSSI) Sports Science Exchange web site, by Janet Walberg Rankin, Ph.D.,Virginia Tech, Blacksburg, Virginia.

The points in this study that affect us as autistics are the long-term metabolic issues. Of course we are not all exercise enthusiasts, or even able to exercise as it is thought of in neurotypical terms. But our bodies have basic metabolic similarities to those of the people around us. In addition to high performance information, this study incorporated data to make recommendations on long-term eating for non-athletes.

A few of the key points about the Glycemic Index concept follow:

The glycemic index (GI) of a food represents the magnitude of the increase in blood glucose that occurs after the food is eaten.

Foods with a low Glycemic Index tend to have a high fructose content and show high amylose/amylopectin ratios. Other aspects of these foods are that they are present in relatively large particles, are minimally processed, and they are ingested along with fat and protein.

"Good" effects of eating lower GI foods 30-60 min before heavy exercise are (as quoted from the report):

* Minimizes the hypoglycemia that occurs at the start of exercise.
* Increases the concentration of fatty acids in the blood.
* Increases fat oxidation and reduces reliance on carbohydrate fuel.

"The effect of the GI on exercise performance is controversial and requires additional research," according to the report, but the "chronic" eating issues are clearer.

Chronic Diet

A longer term feeding study by Kiens and Richter was made in 1966. "Higher insulin sensitively was noted in subjects on the high GI diet and was associated with higher glycogen and triglyceride storage in muscle. Thus, this study suggests that a high GI diet pushes the body towards carbohydrate oxidation (i.e., enhanced insulin sensitivity?)"

Other Health Issues Related to Glycemic Index
"A low GI diet typically improves glucose tolerance and indicators of high blood glucose" (Brand Miller, 1994). "Similarly, Jenkins et al. (1987) found that
those ingesting a low GI diet demonstrated poorer glucose tolerance to an oral carbohydrate challenge than when they consumed the higher glycemic diet. Keins and Richter (1996) also found a better glucose tolerance in normal subjects when they consumed a higher GI diet.

My interpretation of those facts is that it may be that "glucose tolerance" is not the kind of indicator we think it is (i.e., a "good thing," indicating that we do not have type II diabetes). It may instead be an indicator that we have been stressed by chronic exposure to high blood glucose inputs and that we are used to overdriving our pancreas to control the blood glucose levels. The indicator "could" mean that the cycle of high insulin production and high insulin resistance involved in type II diabetes has begun in the individual.

My interactive experience on the internet has shown that many people studying the development of type II diabetes suspect that large amounts of simple (low Glycemic Index) carbohydrates eventually over-drive and exhaust the body's ability to make enough insulin to burn off the resulting blood glucose. There are also studies showing that high levels of glucose in the blood affect cells and are what prevents insulin from working to break down the glucose - - a vicious circle if there ever was one -- resulting in a condition in which more and more insulin is released, with less and less effect. Therefore, chronically overloading the body with simple carbohydrates might not be a good idea in the long run.

This is especially true for the following reason: the population in which autism, celiac disease and type II diabetes all occur the most often is the SAME population. If we are at higher risk for this metabolic disorder, which is increasing alarmingly according to news reports, we are wise to work to prevent it. Many articles and web sites covering this point are available at Don Wisss web sites
http://www.panix.org/~donwiss
 and also the sites devoted to the Paleolithic Diet http://www.panix.com/~paleodiet/.

In a 1992 study, Holt et al. (listed on the handout) found that the high Glycemic Index meals caused a greater feeling of hunger than did the low GI meals.

My experience communicating with type II diabetics has taught me that a person can "get used to" high levels of glucose in their blood. Then, suddenly-occurring "normal" levels of glucose cause them to feel weak and sick, shaky, sweaty -- all the symptoms of hypoglycemia, without the low glucose level that would be expected. A warning level of this condition might just be interpreted as "hunger."

Finally, total and low-density-lipoprotein cholesterol may decrease on a lower GI diet. "Synthesis of cholesterol in the liver is sensitive to insulin concentrations, which tend to be higher with a high GI diet (Jenkins 1987; Kiens and Richter 1996). For example, Jenkins et al. (1987) reported a 15% drop in cholesterol of normal subjects after 2 wk on a low GI diet."

Who could argue with this effect? Study after study has shown that low cholesterol levels are somehow connected with good cardiovascular health. Our circulatory systems get stiffer as we grow older anyway. Adding potential fat blockage as a possibility in already-inelastic arteries should be avoided if possible.

Unfortunately, the number of foods that have been tested for their GI is still small. However the listing at http://www.mendosa.com/gilists.htm is updated frequently.

The Gatorade study concluded that, " because a low-GI diet seems likely to cause lower blood cholesterol and improved appetite control, a low-GI diet on an everyday basis is probably a good choice for athletes and non-athletes alike."

Appendix
Click here to see the URLs for web sites that were sources for this presentation.

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Allergies and Food Sensitivities
Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon
 
People with autism are more susceptible to allergies and food sensitivities than the average person; and this is likely due to their impaired immune system. I have provided a brief discussion of allergies and food sensitivities below.
 
Allergies. An allergy is the body's overreaction to a foreign substance. When a substance causes the body's immune system to overreact, this substance is referred to as an 'allergen.' When an allergen, such as a plant pollen, is inhaled, it is identified by the body as an intruder. As a response, the body produces an antibody called 'immunoglobulin E,' or IgE, to destroy the intruder. The antibodies then attach themselves to mast cells which are located in tissues and basophils and are located in the blood stream. When the IgE also attaches to the intruder, the mast cells and basophils release histamine.
 
Histamine causes swelling of the lining in the nose and causes extra mucus to form. Consequently, the person can suffer nasal itching and congestion, sneezing, and inflamed, irritated, and/or itching eyes. Due to one's immune system, some people are more sensitive than others to foreign substances.
 
Numerous tests are used to identify which foreign substances are allergens. These include skin prick tests, blood tests, x-rays, and nasal endoscopy. There are also many treatments which may alleviate symptoms associated with allergies. Interestingly, giving an extremely small dose of an allergen may desensitize a person to the foreign substance thereby its status as an allergen. This procedure usually involves receiving an 'allergy shot.' One can also purchase sublingual drops from a nutrition store. Vitamins and other nutrients, such as Vitamin C, are also used by many people to reduce allergy symptoms. While not used to desensitize a person to a foreign substance, allergy symptoms can be treated by taking medications such as cromolyn sodium (administered using a nasal spray) or taking antihistamines. These medications sometimes have side-effects, such as drowsiness and dryness. Another method to relieve the suffering associated with allergies is to reduce allergens from one's surroundings, such as using an air conditioner and/or an air filter in the home.
 
Food Sensitivities. There is growing evidence that many people with autism are sensitive to certain food products. The most common food products to which this sensitivity develops are grains (e.g., wheat, rye, oats) and dairy products (e.g., milk, cheese, whey). Other foods, which are often consumed during the spring and summer, are strawberries and citrus fruit. Food sensitivities are considered by many people as allergies in that one's immune system is overly reactive to these substances. Food sensitivities may be responsible for numerous physical and behavioral problems, such as headaches, stomachaches, feeling of nausea, bed-wetting, appearing 'spaced out,' stuttering, excessive whining and crying, sleeping problems, hyperactivity, aggression, sound sensitivity, temper tantrums, fatigue, depression, intestinal problems (i.e., gas, diarrhea, constipation), muscle aches in the legs, ear infections and possibly seizures.
 
Sometimes the person will have changes in physical appearance as a result of a food sensitivity. These can include: pink or black circles around the eyes, bags under the eyes, rosy cheeks or ears, rapid heartbeat, shallow breathing, fluid in the ears (a cause of ear infections), and excessive perspiration. However, it should be mentioned that these behavior and physical symptoms may not necessarily be a result of a food sensitivity and can be due to other causes as well.
 
A reaction to a certain food may occur immediately after exposure or may take up to 36 hours or longer to manifest itself. In addition, reactions usually occur after a meal rather than before a meal. If behavioral problems occur before a meal, the problem may be hypoglycemia (low blood sugar). Interestingly, people often crave the very foods to which they are sensitive. At the present time, we do not know why this is so.
 
There are several ways to determine whether a person is sensitive to a specific food substance. The easiest way is to eliminate completely the suspected foods from one's diet. If a person is sensitive to the food, one would expect an improvement in how a person feels and/or behaves once these products are no longer in the person's system. One way to test for a food sensitivity is to remove the substance from the person's diet for approximately one or two weeks, and then give it to him/her on an empty stomach. The food must be totally eliminated; even a trace amount might be too much for some individuals. In most cases, a food sensitivity reaction, if it occurs, will do so within 15 to 60 minutes; however, it may take several hours to notice some reactions, such as bed-wetting and fluid in the ears. Another way to test for food sensitivities is to rotate food items in one's diet every four days. If the sensitivity exists, then one would expect a reaction to occur every fourth day. Another method used to determine a food sensitivity is to provoke a response with an extract and then neutralize the response by using a diluted form of the food substance. This can be done by having a qualified physician inject the substance into the person via a needle or placing food extracts under one's tongue. When a reaction is observed, then a dilution of the extract is given to stop or neutralize the reaction. For some, a dilution of the food substance will desensitize the person to the allergen itself.
 
The best way to stop a reaction to a particular food substance is to remove that food from the person's diet. Other treatments include taking nutrients to strengthen the immune system and giving the person sublingual drops, i.e., very small amount of the substance.
 
In general, it is important that people realize that allergies and food sensitivities can affect one's health and behavior, but these problems are treatable.
 
The Autism Research Institute distributes an information packet on vitamins, allergies, and nutritional treatments for autism.
Go to http://www.autismwebsite.com/ari/pubs.html#p-24 to learn how to obtain this packet.
 
 
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'Leaky Gut' and the Gluten- / Casein-Free Diet

Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon

Another popular intervention for autism is the gluten-/casein-free diet. Thousands of parents throughout the world have placed their children on this restricted diet and have observed dramatic improvements. As a result, many recipes have been published in specialized cook-books, newsletters, and on the Internet.

Leaky gut.: Many autistic individuals have permeable intestinal tracts, and this is often referred to as ‘leaky gut.’ There appears to be many reasons for the problem of ‘leaky gut’ in autistic individuals, such as a viral infection (e.g., measles), yeast infection (i.e., an overgrowth of candida albicans), and a reduction in phenol sulfur transferase (PST; which lines the intestinal tract and protects it from leakiness). There is also some speculation that heavy metals in the intestinal tract can weaken membranes; and this, in turn, can cause ‘leaky gut.’

As far as treating these potential causes of ‘leaky gut’:

  • Viral -- There are no drugs that can destroy viruses in the body but there are anti-viral drugs that can 'slow down' the virus.
  • Candida albicans -- Many children have tested positive to candida albicans overgrowth and have been treated with anti-fungal medications (see section on candida albicans in this issue).
  • Low levels of PST -- Some parents give their children Epson salt baths to increase levels of PST.
  • Children are also receiving metal detoxification procedures to rid their body of excess heavy metals.

Gluten and casein. Gluten is a protein and is contained in foods, such as wheat, barley, rye and oats. Casein is also a protein and is found in dairy products such as milk, ice cream, cheese and yogurt. In the intestinal tract, gluten and casein breakdown into peptides; and these peptides then breakdown into amino acids.

At the present time, we do not know why the gluten-/ casein-free diet helps many autistic individuals. One popular theory is that when gluten and casein are broken down into peptides, they may pass through imperfections in the intestinal tract. These peptides are termed gliadinomorphin (breakdown of the gluten protein) and casomorphin (breakdown of the casein protein). Both peptides act like morphine in the body. They can also pass through the blood-brain barrier and have a negative impact on brain development.

As stated earlier, the most helpful treatment for this problem is to place the child on a gluten- and/or casein-free diet. When placed on a diet, children, especially under 5 years of age, should not go ‘cold turkey.’ That is, if all gluten/casein food ingredients are suddenly removed from the child’s diet, this could lead to ‘withdrawal’ symptoms, i.e., a worsening of the condition. Lisa Lewis, Ph.D., a parent of an autistic child who is actively involved in disseminating information on the gluten- and casein-free diet, suggests that young children under age six years should be placed on a trial diet for three months to see if there are any improvements; and children who are six years and older should be placed on a trial diet for six months.

Some people suggest that the health status of the child’s intestinal tract should be examined first; and if there is evidence of a ‘leaky gut,’ then the child should be placed on a gluten- and/or casein-free diet. The intestinal permeability test is one way to determine whether a child has a ‘leaky gut.’ This test involves drinking a sweet-tasting solution and then collecting urine samples afterwards. Most physicians can administer this test. Parents have also sent their child’s urine samples to laboratories to test for the presence of abnormal peptides associated with gluten and casein in the urine. However, many people feel that these tests are not necessary and suggest that one should simply place the child on a restricted diet and then observe whether or not there are any improvements in the child.

Resources:

  • Special Diets for Special Kids (1998) by Lisa S. Lewis
  • Unraveling the Mystery of Autism and Pervasive Developmental Disorder (2000) by Karyn Seroussi
  • Autism Network for Dietary Intervention (ANDI): www.AutismNDI.com
  • Celiac (wheat) and casein (milk protein) sensitivity. Information packet (P-26, $11.00) distributed by the Autism Research Institute (www.autismresearchinstitute.com). The Lewis and Seroussi books can also be ordered from ARI.

Source:  http://www.autism.org/leakygut.html

 

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The Candida Yeast-Autism Connection

Written by Stephen M. Edelson, Ph.D.
Center for the Study of Autism, Salem, Oregon

There is a great deal of evidence that a form of yeast, candida (rhymes with "Canada") albicans, may cause autism and may exacerbate many behavior and health problems in autistic individuals, especially those with late-onset autism.

Scenario. Candida albicans belongs to the yeast family and is a single-cell fungus. This form of yeast is located in various parts of the body including the digestive tract. Generally speaking, benign microbes limit the amount of yeast in the intestinal tract, and thus, keep the yeast under control. However, exposure to antibiotics, especially repeated exposure, can destroy these microbes. This can result in an overgrowth of candida albicans. When the yeast multiplies, it releases toxins in the body; and these toxins are known to impair the central nervous system and the immune system.

Some of the behavior problems which have been linked to an overgrowth of candida albicans include: confusion, hyperactivity, short attention span, lethargy, irritability, and aggression. Health problems can include: headaches, stomachaches, constipation, gas pains, fatigue, and depression. These problems are often worse during damp and/or muggy days and in moldy places. Additionally, exposure to perfumes and insecticides can worsen the condition.

Dr. William Shaw has been conducting important research on yeast and its effects on autistic individuals. He recently discovered unusual microbial metabolites in the urine of autistic children who responded remarkably well to anti-fungal treatments. Dr. Shaw and his colleagues observed a decrease in urinary organic acids as well as decreases in hyperactivity and self-stimulatory, stereotyped behavior; and increases in eye contact, vocalization, and concentration.

There are many safe methods to treat yeast overgrowth, such as taking nutritional supplements which replenish the intestinal tract with 'good' microbes (e.g., acidophilus) and/or taking anti-fungal medications (e.g., Nystatin, Ketoconosal, Diflucan). It is also recommended that the person be placed on a special diet, low in sugar and other foods on which yeasts thrive. Interestingly, if the candida albicans is causing health and behavior problems, a person will often become quite ill for a few days after receiving a treatment to kill the excess yeast. The yeast is destroyed and the debris is circulated through the body until it is excreted. Thus, a person who displays negative behaviors soon after receiving treatment for candida albicans (the Herxheimer reaction) is likely to have a good prognosis.

Please note: treatment for candida albicans infrequently results in a cure for autism. However, if the person is suffering from this problem, his/her health and behavior should improve following the therapy.

To learn more about yeast and candida albicans, visit the Autism Research Institute's web site. The Institute's publication list contains an extensive information packet and books on this subject. In addition, William G. Crook, M.D. has written several excellent books on yeast, including the classic The Yeast Connection (1986), The Yeast Connection and the Woman (1995), and more recently, The Yeast Connection Handbook (1996). Dr. William Shaw also provides organic acid testing as well as additional testing. He can be contacted at: The Great Plains Laboratory for Health, Nutrition, and Metabolism, 9335 West 75th Street, Overland Park, KS 66204, U.S.A; telephone: (913) 341-8949; and fax: (913) 341-6207.

The Autism Research Institute distributes an information packet on candida (yeast) and autism.
Click here to learn how to obtain this packet.
 






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