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Frequently Asked Questions

The Big GFCF "FAQ's"

Answering your Frequently Asked Questions about Dietary Intervention for the treatment of Autism Spectrum Disorders and Pervasive Development Disorders


Editors in Chief:
Karyn Seroussi 
Jorgen Klaveness

Co-Editors:
Jay Berger
Jay Bigam
Judy DeHart
Cara Lewis
Lisa S. Lewis

Disclaimer: The content on this website is not medical advice. Consult  with your medical practitioner for all medical advice.


The only non-dairy, non-wheat foods my child will eat are french fries and chicken nuggets. Are these okay?

Chicken nuggets are coated with wheat. Some French fries are dusted with wheat flour to keep them from sticking together. It is a very good idea to get used to checking with your supplier or the manufacturer. Keeping a stack of blank, pre-stamped postcards in the kitchen is a handy way to check.

The biggest problem with French fries eaten out of the house is contamination of the frying oil with gluten from onion rings and other breaded products. Making homemade fries is a good option. If your child refuses them at first, it may be because of what they're missing! Some parents report that their kids have an uncanny ability to detect gluten in foods. Since many of the children enjoy salt, salting the fries might make them more acceptable.


I thought the "five food groups" were so important!

They are, to an individual without food intolerances. But, just as a person who eats a balanced diet might not need to take vitamins, a person with poor nutrition can make up for a lot with a good vitamin and mineral supplement.

 

Should I be giving my child a vitamin supplement?

Absolutely. Poly-vi-sol with Iron is probably okay to start with, or order a gluten-free multivitamin & mineral formula from your natural foods store,  The GFCF Diet Support Group www.gfcfdiet.com or from Kirkman Labs (800-245-8282). Kal Dinosaur Chewables and "I Love Schiff" liquid and chewables are tolerated by many food-sensitive children, and are available with or without minerals. Because many autistic children have been reported to improve on a regimen of vitamin B6 and magnesium, you may want to order a supplement rich in these nutrients from a lab such as Kirkman. For a 40 pound child, Dr. Bernard Rimland of the Autism Research Institute recommends 300 mgs. of B6 and 100 mgs. of magnesium per day. It is likely that in people with a leaky gut, absorption of B6 (which aids in nervous system function) could be greatly diminished.

 

What are my child's nutritional needs?

There are six basic things a person needs from food: water, protein (and amino acids,) carbohydrates, fats, vitamins, minerals (including iron & calcium.) In addition, food contains certain phytochemical substances that seem to help with functions like disease prevention. It is helpful to consult a nutritionist about the use of supplements such as pycnogenol for any child on a limited diet.

Children who have gone for one year eating only chicken, canola oil, potato, rice, calcium-enriched beverages, and a liquid multivitamin supplement with minerals have had excellent results on nutritional blood tests. You'd be surprised to learn just how unnecessarily varied an American diet is, compared with the diets of other cultures!
 

So how do I know if my child will respond to this diet?

The biggest clue is when a child self-limits his diet - especially to milk and wheat. This is no longer seen as a "need for sameness" but as a biological addiction. Children who don't necessarily "self-limit" but who also respond are those who eat an unusually large or small amount of food. Although the former may not recognize the source of the opiates, he knows that eating makes him feel good. The latter may realize that many foods make him feel ill, and tries to avoid eating whenever possible. These "failure to thrive" autistic children are very hard to put on this diet because of their parents' fears, but will usually respond when acceptable substitutes to the non-tolerated foods can be provided.

Other symptoms of food intolerance or vitamin deficiency are dermatitis or extremely dry skin, migraines, bouts of screaming, red cheeks, red ears, abnormal bowel movements, abnormal sleep patterns or seizures?

What's all this I hear about yeast?

Candida and other yeasts live in our bodies in small amounts. It was speculated that in individuals with improperly-functioning immune systems, they could flourish in the gut and lead to a host of problems, including fatigue, sugar cravings, headaches, and behavioral problems.

Dr. William Shaw in Kansas has found unusually high levels of "fungal metabolites" (yeast waste products) in the urine of several groups of abnormally functioning individuals (including people with autism.) His first paper describing this phenomenon was published in the Journal of Clinical Chemistry in 1995 (Vol. 41, No. 8.) His urinary organic acids test is performed by the Great Plains Laboratory (913-341-8949).
 

So does yeast cause autism?

This finding may be just another consequence of the abnormally functioning autistic immune system. However, early antibiotic use may actually be the triggering factor for children predisposed to autism. It has been hypothesized that the candida might aggravate a condition of gut permeability (the "leaky gut" syndrome), which might let the gluten and casein proteins into the bloodstream before they are broken down, so it may in part be responsible for autistic behaviors. Many parents of children with ADD or ADHD as well as those with autism report that treatment for candida does improve their children's behavior and concentration.
 

How do I treat for candida?

One approach is to ask your pediatrician for a course of Nystatin, which is a non-systemic (not absorbed into the bloodstream) anti-fungal. Taken orally, it works locally in the gut to fight candida. This medication is considered to be quite safe, even when taken for several months. For a 25-35 lb. child, ask the doctor for a prescription for Nystatin powder (125,000 units per cc) in a stevia base, starting with 1 cc 4x/day. Your local pharmacy probably carries a commercial preparation in a sugar base - this feeds yeast! Try a compounding pharmacy such as Pathway (800-869-9160).

"Probiotics" such as acidophilus, the natural bacteria found in yogurt, are other candida-fighters, and are available at the natural foods store in powdered form in the refrigerated section, or from Kirkman Labs. Some acidophilus preparations are milk-based - be sure to get one that is not! Bifidus works in the large intestine and can be of great benefit. "FOS" is desirable in these supplements, as it feeds the probiotics.
 

That's why you're supposed to eat yogurt when you are on antibiotics!

Exactly. As a matter of fact, in the 1950's, when oral antibiotics were first prepared for general use, scientists knew about this candida problem and coated the tablets with Nystatin. After a few years, the FDA decided that the two drugs should be prescribed separately (which they never were) and made them stop.

My friend's child tried Nystatin and it made him vomit.  If nystatin is so safe, why did he react to it?

The child may have experienced a "die-off reaction" to the candida. As it dies, candida releases toxins into the bloodstream and can cause nausea, vomiting, or diarrhea. It is likely that candida was indeed a problem for this child. Your friend should discuss a dosage change (starting with a low dose and working up to a "normal dose") with the prescribing doctor.

My doctor has never heard of any of this and she is extremely skeptical. I'm embarrassed to tell her I'm considering this approach.

Skepticism is a good thing in a medical doctor or scientist. However, since there is preliminary evidence to support this safe, non-invasive intervention, it is up to you to educate her, state your wishes, and ask for her support. For a doctor, it is better to wait until all of the data is published in peer-reviewed journals before advocating a treatment. For a parent, it is reasonable to want to help one's child without waiting for all of the results of the "double-blind placebo" studies. Because this approach does not include any unusual supplements, invasive drugs, or expensive treatments, your pediatrician should be supportive. Explain that you would like to try this for a few weeks, and agree that you will be objective about recording your child's progress while on the diet.

Where can I find support?

www.gfcfdiet.com
Largest  free resource on the Internet for information about the GFCF Diet.  Community Bulletin Board with over 150 support groups throughout the United States. Find support in your city or start your own GFCF Diet Support Group.  Guidelines and helpful information provided on the Community Bulletin Board section (see Directory of website; GFCF Kids, our on-line support group with over 10,000 members!
 

www.autismndi.com ANDI was established by parent researchers, Lisa Lewis and Karyn Seroussi, to help families around the world get started on, and maintain an appropriate diet. The ANDI mission is simple: To help parents understand, implement and maintain dietary intervention for their autistic children. Look at the PASS list  for local contacts, or form a group yourself. 

Karyn Seroussi author: Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery (Simon & Schuster, February 2000, Broadway Books, 2002). 

Lisa Lewis's author:, Special Diets for Special Kids I and II, include loads of information and recipes. 

When my child was taken just off dairy he improved greatly, but then he started eating a lot of wheat, perhaps to make up the opiates he was missing. Will I see the same kind of noticeable improvement when I remove gluten?

Some children appear to tolerate gluten. Others are highly sensitive. The degree of tolerance in a specific child is not constant either: It can depend on gut permeability, enzyme function level and a number of other reasons that are poorly understood.
The general answer is, however, that most children who benefit from a milk free diet, will also need to remove gluten.

Some parents say that their child's response to milk removal was quicker and more obvious than when gluten was removed. Paul Shattock has observed that urine tests have shown that casein peptides can leave the system in about three days, but it can take up to eight months on a casein-free, gluten-free diet for all peptide levels to drop.

Research has shown that gluten (as well as casein) can give rise to several different types of opoid peptides, and that these types have different sized molecules. Dr. Robert Cade has demonstrated that the molecule size affects the speed with which the peptides disappear from the body.

If gluten removal is followed by a deterioration or regression (a withdrawal-type response), stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for an uncertain payoff, but in the lifetime of your child it may be the most important step you take!

What is casomorphin?

Casomorphin (or caseomorphin) is a peptide derived from casein, a milk protein. Casein is one of the major proteins in the milk of all mammals including cows, goats, and humans. When Casein is digested properly, it breaks down into large peptides like casomorphin, and should then be broken down further into smaller amino acids.
However, Dr. Reichelt in Norway, Dr. Cade at the University of Florida, and others found that urine samples from people with autism, PDD, celiac disease, and schizophrenia contained high amounts of the casomorphin peptide in the urine. In its peptide form, casein has opiate properties similar to morphine, and may plug into the same opiate receptor sites in the brain. Researchers have found that these peptides may also be elevated in other disorders such as chronic fatigue, fibromyalgia, and depression based on anecdotal reports of symptom remission after exclusion of wheat and dairy.

What is gliadorphin?

Gliadorphin (also called alpha-gliadin or gluteomorphin) is a substance that resesmbles morphine. Ordinarily, this is a short-lived by-product from the digestion of gluten molecules (found in wheat, barley, rye, oats, and several other grains). Gliadorphin is very similar to casomorphin. Gliadorphin has been verified by mass spectrometry techniques to be present in unusual quantities in urine samples of children with autism, and are believed by many to be a central part of the system of causes and effects that cause autistic development.

The most probable reasons for the presence of these molecules are:

* One or more errors in the breakdown (digestion) process caused by enzyme deficiency and/or

* Abnormal permeability of the gut wall (that would allow these relatively large molecules to enter the bloodstream from the intestine in abnormal quantities).

Is it best to start with one or the other or just go GF/CF from the start?

Some people like to get moving quickly and remove both at once. While this kind of commitment is commendable, there are two reasons why you might want to begin by removing dairy alone. One is that it may be far easier to understand which foods to remove, and allow for parents to get started more quickly. This gets parents in the habit of reading labels, and will get the child used to the idea of eating substitutes for some of his favorite foods.

The other reason is that some children, especially younger ones, can go through a very uncomfortable withdrawal period as the opiates leave the system. This is why some kids' behavior gets worse at first. Although gluten should be removed within a week or two after removing dairy (waiting longer may cause the child to become addicted to gluten, and self-limit only to bready foods), a gradual withdrawal will be easier on the child.

Often, picky children will not try new foods until both gluten and casein are completely eliminated from their diets, and are totally unavailable to them.

Why do I need to completely remove both gluten and casein?

t doesn't take much of these opiate peptides to interfere with normal functioning. Although you may notice a change after just removing dairy (a good place to start), the proteins are so similar that if one is a problem, the other should be removed as soon as possible. Often, no improvement is noted until a hidden source of gluten or dairy is removed from the diet.

Do children with Pervasive Developmental Disorder, Asperger's Syndrome, Apraxia, Dyspraxia and Sensory Integration Dysfunction, and Expressive/Receptive Language Disorder respond to this diet?

These are all considered by many to be disorders on the autism spectrum. If you took the same autistic child to six different doctors, he could be diagnosed with each of the above. For some reason, many professionals are reluctant to use the "Autism" label, perhaps because they want to "spare" the family. We have heard from many, many parents who have told us that some of their children with these diagnoses responded dramatically to the diet. Remember, this diet will only improve the symptoms in children whose behaviors are being caused by the abnormal breakdown of these proteins. This is not the case with every child, but a significant number do respond.
 

Do older children or adults respond to this diet?

Yes. Obviously, the younger the child the more likely he is to "achieve normal functioning." However, many older children and adults have made dramatic and remarkable improvements, not just in their level of functioning, but in their sleeping patterns, anxiety levels, and comfort levels.
Other factors seem to include current level of functioning, condition of the gut, immune function, and of course, the subtype of the disorder. We have heard from high-functioning adults with autism who describe going on the diet as "a fog lifting." Clearly, most older children have not been "cured," but many have achieved functioning far beyond their caregivers' expectations.

Can you recommend a pediatrician who will listen to me and is "open minded." My pediatrician does not believe diet changes can help. I am willing to go anywhere and do anything for my child.

Although there are now several doctors who are enthusiastically learning about the biological treatments for autism, they are still few and far between. You may need to find a local doctor who is supportive, and educate him or her yourself.
To see a list of DAN! (Defeat Autism Now!) Doctors, or to order the Autism Research Institute's Treatment Guide, The "DAN Protocol," visit
www.autism.com/ari


There are also medical links at
www.gfcfdiet.com

and www.autismndi.com/links 

For an incomplete list of physicians reported to be knowledgeable about the "DAN Protocol," visit
www.autismndi.com/doctors.htm
 

My doctor has never heard of any of this and she is extremely skeptical. I'm embarrassed to tell her I'm considering this approach. What do you think?

Skepticism is a good thing in a medical doctor or scientist. However, since there is preliminary evidence to support this safe, non-invasive intervention, it is up to you to educate her, state your wishes, and ask for her support. For a doctor, it is better to wait until all of the data is published in peer-reviewed journals before advocating a treatment.

For a parent, it is reasonable to want to help one's child without waiting for all of the results of the "double-blind placebo" studies. Because this approach does not include any unusual supplements, invasive drugs, or expensive treatments, your pediatrician should be supportive. Explain that you would like to try this for a few weeks, and agree that you will be objective about recording your child's progress while on the diet.
If you feel that you need to support your case legally with the scientific and medical documentation that is currently available, please see the medical links at www.gfcfdiet.com , at
www.autismndi.com 

But my child's immune system seems to be working unusually well - he is rarely sick.

What we're describing is not an immune deficiency, but rather an immune dysfunction. Many (although not all) seem to share a history of ear infections and spitting up as babies (possibly milk-related), or of chronic diarrhea, constipation, or loose stools (possibly wheat-related.) Other parents note that their autistic children seem to be the healthiest members of the family. In this case, it has been hypothesized that the immune system is too aggressive and ends up turning on the nervous system. This may explain the presence of anti-myelin antibodies in some children, and may also explain why some have immune issues like multiple allergies but do not respond well to dietary intervention.

What causes this problem? Autism seems to be so much more common than it used to be?

Researchers are not sure, but it seems likely at this time that most cases are caused by a genetic predisposition or by environmental toxicity, combined with some kind of triggering event that stresses the immune system, such as a vaccination or virus. Milk allergy may be a predisposing factor, or perhaps another immune instability. In several cases, prolonged use of antibiotics, celiac disease, or chronic viral illness seems to have contributed to the onset of the disorder.

There was some debate as to whether we are seeing an increase in incidence or just better diagnosis, but studies by the California Department of Developmental Services indicate that there has been, in fact, a significant increase in the number of children with this disorder in the past ten years.

One reason we can determine this is by looking at the number of school-age children referred for special education for various disabilities. If autistic children had been classified as something else (such as mentally retarded), then one would expect the number of children entering the system with the MR diagnosis to drop, as the autism numbers go up. However, this is not the case, with an increase in autism of up to 600% in some school districts, and the total number of special-ed cases increasing respectively.

I am confused about allergy vs. intolerance. I understand that our children may be sensitive to corn, soy and other foods as well as gluten and casein. Does this mean that they will eventually start turning these foods into the morphine-like compounds too? If this were the case, would they show up as an allergy on a RAST test? Or were our children were always allergic to these foods (a regular allergy that may cause behavioral changes in our children), and we just didn't know because the gluten and casein were hiding the allergy.

To a traditional physician or allergist, "allergy" is used to describe a reaction of the IgE part of the immune system, resulting in hives, swelling, or breathing problems. However, the words "allergy" and "intolerance" are often used to describe any inappropriate reaction to foods or substances that should normally be harmless to the body.
There are at least three different ways that a child with autism may have a problem with a food like gluten or milk, and it's important to understand the distinction:

1. An IgE ALLERGY that results in skin problems, hives, swelling, breathing problems, etc. This can be tested using a skin test or blood test.

2. An INTOLERANCE (usually mediated by the IgG or IgA part of the immune system, or by an enzyme insufficiency such as lactose intolerance) that can result in more varied or vague symptoms like discomfort, stomach problems, sleep problems, joint pain, ear infections, or hyperactivity and behavior problems. Sensitivity to these substances can be tested with an ELISA blood test.

3. PEPTIDUREA (peptides in the urine) that is caused by the inability of the body to properly break down certain proteins. It is hypothesized that certain peptides, notably from milk and wheat proteins, are plugging into the opiate receptor sites of the brain and disrupting brain and nervous system function. Urine testing for this is still experimental, and many parents believe that the best way to find out if this is what is causing a child's autism is a strict trial period on the GF/CF diet.

In the GF/CF diet, gluten and milk are avoided because they are strongly suspected of having such a direct pharmacological effect. When these proteins are only partly broken down, some of the resulting fragments can be strikingly similar to morphine, and act in more or less the same manner. (This type of reaction can co-exist along with a classic type of allergy towards the same foods).

Recent research indicates that protein from both corn and soy could also contain some molecule sequences that could - if the patient had an enzyme deficiency - be broken down into something closely resembling opioid peptides. Even spinach protein has been found to have some opioid activity.

Products made from soy or corn will also often contain metabolic end products made by microscopic organisms like bacteria, molds or fungus. Some of these are suspected of being harmful to a small number of people who are genetically disposed to autism. The amount of danger will depend on individual conditions AND on the quality of the corn or soybeans used in the production process. Soy OIL (lecithin) may be worse than most other soy products, since this product will look and taste okay, even when made from moldy raw material, and since the "bottom grade" of the harvest tends to be used for it.
 

Some people also think that one of the natural pigments in corn (lutein) might cause problems for reasons that are not properly understood (see: "Sara's Diet"). This must be regarded as highly speculative.

I heard that dairy peptides (from casein) leave the body in about 2-4 days and that gluten takes much longer. How long does it take to eliminate gluten from the system, or at least bring it down to an acceptable level? Is it possible that gluten might never leave the body completely?

We don't know the answer to this. In a study by Paul Shattock, researchers found a 22% reduction in 5 months in children (average age 9). Peptides may leave the body more rapidly in little children because they have accumulated less - they tend to have worse withdrawal symptoms (more vicious but shorter duration).
In Celiac Disease there were still antibody/gliadin complexes found in the body some 7 years after going gluten free, so it is possible that some of the peptides may not leave the body completely.

What is Urinary Peptide Testing?

By collecting urine samples, storing them frozen, and examining them using mass spectrometry, HPLC, or RA methods, certain opiates such as casomorphin can be detected in levels higher than those found in normals. Such results would indicate the necessity of implementing a GF/CF diet. However, there is still some debate as to the accuracy and consistency of these test results.
From Paul Shattock: "Certain biologically active peptides derived mainly from gluten and/or casein in the diet are not broken down correctly, and through problems with the permeability of the gut, are present in the blood in much greater quantities than would normally be expected. The presence of these compounds in the blood would mean that they would tend to be collected in the kidneys and dumped in the urine; hence, the peptide content of urine would be to some extent, reflective of the content of the blood."

What else contains gluten?

Wheat, oats, rye, barley, kamut, spelt, semolina, malt, food starch, grain alcohol, and most packaged foods - even those that do not label as such. There is a lot of information on gluten intolerance because of a related disorder called Celiac Disease.

Aren't probiotics the "healthy flora" I've heard about?

Yes, they compete with candida for the sugars you eat. It's the "good bacteria." You may be aware that acidophilus is eradicated from your gut when you take antibiotics.
 

How do I interpret the test results?

Each lab is different, with different testing methods and reference ranges. If you do not understand the test results, call the lab directly.
 

My child does not crave certain foods - could he respond to the diet?

Yes, absolutely. Although food cravings are a "dead giveaway," those who have them are not the only kids who respond to the diet. Other big clues are GI problems like diarrhea or constipation, good and bad days, dilated pupils, and sleep disturbances. However, if your child does not meet these criteria, he still may have a surprising response.

Sometimes we feel that parents are hoping we'll tell them that their child doesn't need to be on this diet. Isn't that sad? This would mean that there is nothing they can do for the child besides therapy. However, we estimate that about 70% of autistic children do respond to the diet. These are good enough odds to do the work involved.
 

If my child responds to the removal of dairy, does that mean I have to remove gluten? Is it possible that he can have a problem with one, and not the other?

The structure of the peptides of gluten and casein (and possibly corn or soy) are very similar in size and weight as well as ability to cause a reaction. If one needs to be removed, the other should go as well. Even though you might notice more of a reaction to one or the other, this could be caused by allergy, not a peptide problem.

What if I don't get results after a long time on the diet?

We recommend the following actions:
a) Increased doses of digestive enzymes with every meal. For example, the standard dosage of SerenAid is 2 capsules at the beginning of every meal. Consider giving three capsules 4x/day.

b) Increased vigilance to make double sure that there is no contaminated food getting through (check things like gum, supplements, playdough, and vigilance at school).

c) You can also try 14 days of "stone age diet", to make sure that nothing even remotely capable of causing problems is entering the system. In particular, we would try eliminating soy protein and eggs. If this restricted diet seems to help, don't stay on it indefinitely. You should reintroduce one type of modern ingredient at a time, with 3-5 day intervals, giving large quantities of each product in turn, and watch out for reactions. Remember that the most obvious part of the reaction can be delayed by up to 3-4 days.

You may want to add nutritional supplements that may be deficient in your child's diet. There is a test offered by Doctor's Data called the "Red Blood Cell Elements" test that can identify deficiencies and/or excesses of essential nutrients. Even though your child may be given supplements each day he/she may not be absorbing them, especially with a leaky gut. For example, in some gut diseases, the gut does not heal even with dietary intervention if there is an underlying zinc deficiency. Check with a doctor and/or a nutritionist who is knowledgeable in this area. -CL

If you have done all of the above for at least 3-6 months (some researchers recommend a year), and you decide to stop doing the diet, proceed with caution:
On an empty stomach, first thing in the morning, give the child a significant amount of dairy such as a glass of Lactaid milk (lactose reduced products will keep you from confusing the peptide issue with a possible lactose intolerance).

Resume the strict GF/CF diet for four days -- watch for changes in pupil size, bowels, sleep, and behavior. If there is no change, do the same challenge with gluten.

If there is no effect, and you decide to take the child off the diet, watch carefully for regression. This can occur for up to three months, especially if the gut had healed and becomes leaky again due to slow damage from the gluten. -KS

How do I know if this applies to my child?

Although there is some peptide testing available, the waiting time for results can be long, and widespread use of a reliable test is not yet available. The researchers agree that this is a very common problem in the autistic population, so a trial period on the diet may be your child's best bet. Although a lab result is more convincing to a doctor, the noticeable improvement many children exhibit will usually persuade even a reluctant spouse to support the diet. Many affected children who eat a great deal of dairy and/or wheat-based foods will show changes within a few days of their elimination.

The diet must be strict. Many parents have found that their child did not improve until they discovered and removed a hidden source of gluten or dairy. Noticeable changes in eye contact, pupil size, sociability, and language are one sign that diet is an important issue. Another thing to look for are changes in the child's bowel movements or sleep patterns.

Are they reliable? How reliable?

Karyn Seroussi on Lab Reliability:
"I don't think anyone I know in this business is 'preying on vulnerable parents,' but I do believe that the current technology is not up to the task of consistently and reliably identifying these peptides, since they are unstable and tend to degrade after collection. At best, the tests seem to be giving some parents the push to start the diet (many or most of them need to anyway), and at worst, they are giving misleading results. For some people, the test seems to have been useful as a guideline -- it's an individual choice whether to have it done. I have never advocated the peptide testing. I have always maintained, as in my book, that the best test is a trial on the diet. I cannot fathom why parents would wait even a day for test results when they could be implementing this diet, based on the pretty good odds that it will make a difference."

Which labs do food allergy blood testing?

Immuno Laboratories, Inc. in Florida offers the IgG Standard Food Sensitivity Assay test with a food panel of over 100 tested foods. This is a blood test that is sent from your doctor to the lab in Florida. Many insurance companies will cover most of the test. It usually takes about two weeks to receive the test results. Many of the DAN! docs use this lab and have found it to be reliable. The address and phone number for Immuno Laboratories is: Immuno Laboratories, 1620 West Oakland Park Boulevard, Fort Lauderdale, Florida, 33311 Phone: 800-231-9197.
Alletess Laboratories is another lab reported to give reliable results on a multiple food allergy panel, and their prices are reasonable. Their number is 800-225-5404.

My son has been on the diet for several months now, with positive results. He recently ate a hamburger bun, and there has been no regression. What does this mean?

1. Sometimes there is no reaction. There can be several reasons for this. Two of the most obvious are:
a) The gut may have healed to some extent
b) The patient's enzyme system may have started to function again.

2. Sometimes, there is a reaction, but it gets overlooked. There are at least two reasons for this:
a) People don't know what signs to look for, and tend to overlook the subtler symptoms that something is wrong.
b) Time delays: Infringement reactions follow different patterns, and some of the more obvious signs can be delayed by anything up to 3 days. When they eventually appear, they are not overlooked, but the connection with the infringement is.
Warning: Even if the first diet infringement appears to have had no effect, you should be very careful. There are several stories about families who have reintroduced "normal" intake of gluten and milk, and who have managed to overlook the subsequent severe regression for up to six weeks because it was so gradual.

In older kids who have dramatically improved or recovered on the diet, the reintroduction of gluten doesn't necessarily make them autistic. We have received reports that after a few weeks some may become delusional or even schizophrenic.

There are several reasons why this can happen:
1. Gut damage can re-occur after repeated exposure to gluten or milk in allergic individuals
2. Yeast / fungus / anaerobic bacteriae may re-colonize the gut if the patient goes off the diet, and can damage the lining of the gut wall
3. Habituation or bell-shaped dose response curve
(do keyword search for more information)

I don't think my child has allergies, or that allergies could cause autism. Why should I try removing foods from his diet?

Although parents have been reporting a connection between autism and diet for decades, there is now a growing body of research that shows that certain foods seem to be affecting the developing brains of some children and causing autistic behaviors. This is not because of allergies but because many of these children are unable to properly break down certain proteins.

What happens when they get these proteins?

Researchers in England, Norway, and at the University of Florida have found peptides (breakdown products of proteins) with opiate activity in the urine of a high percentage of autistic children. Opiates are drugs, like morphine, which affect brain function.

Which proteins are causing this problem?

The two main offenders seem to be gluten (the protein in wheat, oats, rye and barley) and casein (milk protein.)

Milk and wheat are the only two foods my child will eat. His diet is completely comprised of milk, cheese, cereal, pasta, and bread. If I take these away, I'm afraid he'll starve.

There may be a good reason your child "self-limits" to these foods. Opiates, like opium, are highly addictive. If this "opiate excess" explanation applies to your child, then he is actually addicted to those foods containing the offending proteins. Although it seems as if your child will starve if you take those foods away, many parents report that after an initial "withdrawal" reaction, their children become much more willing to eat other foods. After a few weeks, most children surprise their parents by further broadening their diets.

If I take away milk, what will my child do for calcium?

Children between the ages of one and ten require 800-1000 mg of calcium a day. If the child drinks three 8-oz glasses of fortified rice, soy or potato milk per day, he would meet that requirement. If he drank one cup per day, the remaining 500 mg of additional calcium could be supplied with one of the many supplements available. 

Custom-made calcium liquids can also be mixed up by compounding pharmacies using a maple, sucrose syrup, stevia or water base.
There are some very good calcium-enriched milk substitutes on the market; check for varieties that are calcium-enriched. Soy milk contains protein and is a good option for some, although many children with this disorder are intolerant to soy. Rice Dream is processed with barley enzymes, there is some concern over whether it will cause a reaction in individuals highly sensitive to gluten. For a gluten-free diet, look for other brands of rice milk, such as Pacific Foods nondairy rice beverage, at your natural foods store. Darifree, a pleasant-tasting potato-based milk substitute that is lower in sugar than rice milk, is available by mail-order (1-800-497-4834).


Is this diet expensive?

There is no denying that some of the gluten-free ingredients you will want to keep on hand are more costly than the staples you are used to buying. However, when you order by the case, the above milk substitutes cost about the same as cow's milk. Some parents report that their autistic children were drinking over a gallon of cow's milk per day (about $60/month!) but these same parents were reluctant to switch to rice milk at $1.30/quart.

As with all foods, convenience products such as frozen rice waffles are expensive, but making these from scratch is easy and inexpensive. Bulk rice flour is about 45c/pound, and there are several good gluten-free cookbooks. You'll find yourself making rice and potatoes more often, instead of ordering out. You might even save money

I might be willing to try removing dairy products from his diet, but I don't think I could handle removing gluten. It seems like a lot of work, and I'm so busy already. Is this really necessary?

What you need to understand is that for certain children, these foods are toxic to their brains. For some, removing gluten may be far more important than removing dairy products. You would never knowingly feed your child poison, but if he fits into this category, this is exactly what you could be doing. It is probable that for this subgroup of people with autism, eating these foods is actually damaging the developing brain.
 

Removing both foods at once seems overwhelming. I'm afraid o
f my child's reaction. Can I start slowly?

Many parents strongly suggest that you try removing dairy first, and then work on planning for a completely gluten-free diet. Gluten can take more effort and some education on your part, and preparation may take a bit longer. Some physicians recommend doing this diet one step at a time to accurately record the child's response, and to reduce withdrawal reactions. The experts seem to agree that the milk and wheat proteins are so similar to each other that if one is a problem, the other should be removed as soon as possible.

How do I know if this applies to my child?

Although there is some peptide testing available, there are many reports of false negatives and false positives. Widespread use of a reliable test is not yet available. DAN! doctors and researchers agree that this is a very common problem in the autistic population, so a trial period on the diet may be your child's best bet. Although a lab result is more convincing to a doctor, the noticeable improvement many children exhibit will usually persuade even a reluctant spouse to support the diet.

Many affected children who eat a great deal of dairy and/or wheat-based foods will show changes within a few days of their elimination. For some, it can take up to three months. Some children don't appear to benefit significantly, yet when the proteins are re-introduced a regression is noted. The diet must be strict. Many parents have found that their child did not improve until they discovered and removed a hidden source of gluten or dairy. Noticeable changes in eye contact, sociability, and language are one sign that diet is an important issue. Another thing to look for are changes in the child's bowel movements or sleep patterns.

I'd love to do some testing before starting the diet. Is there a measurable test result I can use to convince myself, my spouse, or my doctor?

We are all looking forward to the day when reliable peptide testing is available. Remember, this is not an allergy. Allergy testing may be useful for other reasons, but not to determine whether the child needs to be off dairy and gluten because of developmental delays or autistic behaviors. Until that time, it is imperative that you take your child off of these foods for a trial period of at least three months. And this means completely, or you will not see a change.

If your child craves or self-limits to foods containing dairy and/or gluten, we can tell you that in all likelihood your child needs to be on this diet. We have never heard of a child with those symptoms who did not respond. Although starting the diet seems difficult, waiting may hurt your child. Try imagining that foods like macaroni & cheese are actually a dose of autism. If your child's delays are being caused by these foods, this could be the case.

At this time, testing for urinary peptides is being done at the University of Oslo in Norway (Reichelt), at the University of Sunderland in England (Shattock), and at some private, independent labs such as Antibody Assay, Great Plains Labs, etc. However, because there may be some variability in results, and there appear to be some false positives and false negatives, it seems to be best to simply try the diet. Do it right, and do it for at least three to six months, and see if your child is a responder. In very young children, the response is often apparent within hours or days. In older children and adults, it may take longer to see an effect. If you are unsure about your ability to commit to this diet without medical testing, contact one of the labs that does urinary peptide testing for more information. -KS

If you need more medical abstracts than this, contact Judy DeHart at products@GFCFdiet.com; she has many.

The DAN protocol from ARI (Autism Research Institute) is a great source of information for testing, etc. ARI also has a lot of information about vitamins and supplements
www.autism.com/ari/  . There is also a list of DAN doctors in this protocol book and also on www.gfcfdiet.com

The following are articles of interest in the journal titled "Autism":
1. International Journal of Research and Practice vol 3 (1) (1999):
2. Whiteley P., Rodgers J., Savery D., Shattock P. "A gluten free diet as an intervention for autism and associated spectrum disorders: preliminary findings."
3. Dr. Cade: "Beta Casomorphin induces FOS like immunoreactivity in discrete brain regions relevant to schizophrenia and autism" and "A peptide found in schizophrenia and autism causes behavioral changes in rats."

How can I contact the labs that do urinary peptide testing?

Autism Research Unit
Dr. Paul Shattock/ Paul Whitely
School of Health Sciences
University of Sunderland, Sunderland SR2 7EE UK
Tel:+44 0191 510 8922/ FAX: +44 0191 567 0420
Urine test for urinary peptides
http://osiris.sunderland.ac.uk/autism/index.html
email:
aru@sunderland.ac.uk


AAL Reference Laboratories, Inc.
(affiliated with University of Sunderland)
Antibody Assay Labs
1715 E. Wilshire #715
Santa Ana, CA 92705
714-972-9979
FAX 714-543-2034
1-800-522-2611
inquire@aalrl.com


The National Hospital
Clinical Chemistry Section
Dept. of Pediatric Research
Rikshospitalet-The National Hospital
Pilestredet 32 N 0027
Oslo, Norway
Karl Reichelt, M.D., Ph.D., Director
email:K.L.Reichelt@rh.uio.no please note: results are taking 3 months at this time. We will let everyone know when Dr. Reichelt and his team are caught up on their testing.)
Phone +47-22-86-90-45
Fax: 47-22-86-91-17
The test can determine the quantity of the morphine-like proteins but not the source (gluten or casein). If you want the documentation on urinary peptides in your child, you could follow the instructions on page 144 of Shaw's book "Biological Treatments for Autism and PDD by Dr. Shaw and send the urine to Reichelt at the National Hospital of Norway in Oslo. (It's easier than it sounds to get it there and you'll get good results)


The Great Plains Lab
9335 West 75th St.
Overland Park, KS 66204
phone 913-341-8949
FAX 913-341-8949
Dr.William Shaw, Ph.D., Director
General Information and support:
gpl4u@aol.com
Urine organic acid test/ In order to have the test done, requires doctor's request. However approval in not needed to order the test kit. www.greatplainslaboratory.com/


Detecting anti-gliaden and anti-casein antibodies
Blood test (Gluten and Casein Screen)
Alletess Medical Laboratory
J. Robert Cade, MD & Malcolm Privette PA-C
216 Pleasant St.
Rockland, MA 02370
1-800-225-5404
Additional Contact Info: Robert Cade, MD & Malcolm Privette PA-C
Departments of Medicine and Physiology
PO Box 100204
University of Florida
Gainesville, FL 32610-0204
Phone: 352-392-8952
Fax: 352-392-8481
Email:
info@autism-diet.com
Dr. Robert Cade, M.D. is affiliated with the University of Florida.
Anyone can have a "gluten and casein screen" test done by the Alletess Medical Laboratory. The blood test is for detecting anti-gliaden and anti-casein antibodies.
Testing for Antibody levels in the blood
The following labs determine immune system dysfunction. A doctor must order these tests.

Specialty Labs
Santa Monica, California
phone # 800-421-7110
Draw Anti-MBP test #1056 and Anti-Neuron Filament Protein antibodies test #1052 (blood test). This is a must test.
Dr. Singh's Lab
Utah State University
email
singhvk@cc.usu.edu
email
singhvk@biology.usu.edu
# 435 797-7193
Also performs same tests as Specialty Labs
Draw Anti-MBP test #1056 and Anti-Neuron Filament Protein antibodies test #1052 (blood test). This is a must test.
Email him a request with your telephone number or address to see his availability to perform the tests.

Testing for Yeast
Great Smokies Diagnostic Lab
Martin Lee. PhD, Director
63 Zillicoa Street Asheville, NC 28801
1- 800-522-4762
Comprehensive Digestive Stool Analysis and Parasitology x 3 for parasites, digestive errors and yeast. Requires a doctor's request. Scientific abstracts & studies supporting the GF/CF diet. 

 

Isn't milk necessary for children's health?

A: Americans have been raised to believe that this is true, largely due to the efforts of the American Dairy Association, and many parents seem to believe that it is their duty to feed their children as much milk as possible. However, lots of perfectly healthy children do very well without it. It's not milk that children need, it's calcium. Cow's milk has been called "the world's most overrated nutrient" and "fit only for baby cows." There is even evidence that the cow hormone present in dairy actually blocks the absorption of calcium in humans.

Be careful. Removing dairy means all milk, butter, cheese, cream cheese, sour cream, etc. It also includes product ingredients such as "casein" and "whey," or even words containing the word "casein." Read labels - items like bread and tuna fish often contain milk products. Even soy cheese usually contains caseinate.

For more information on dairy-free living, there's a very good book called Raising Your Child Without Milk by Jane Zukin. There is also a very good little book called Don't Drink Your Milk by Frank Oski (the late head of Pediatrics at Johns Hopkins and author of Essential Pediatrics). This book cites the results of several research studies that conclude that milk is an inappropriate food for human children. It is available for $4.95 from Park City Press, PO Box 25, Glenwood Landing, NY 11547, ISBN #0671228048.

After I removed gluten and casein, I discovered that other foods seemed to be causing a problem, like apples, soy, corn, tomatoes, and bananas. I see irritability, red cheeks and ears, and sometimes diarrhea or a diaper rash. I thought you said that these kids don't have allergies!

Many do have allergies, or allergy-related symptoms such as hay fever, asthma or eczema. Sometimes they have problems with foods which are not "classical" allergies, and which won't show up on skin tests. In this case, a different type of immune response seems to be involved.
 

So if these foods are not contributing to his autism, they're okay?

Not really. Current research indicates that in a great many cases, autism seems to be an immune system dysfunction. This can lead to a problem breaking down casein & gluten, but may also result in a problem breaking down phenolic foods (phenol sulfur transferase deficiency,) and an over-reactive response to other allergens.

Often, once gluten is removed, this effect becomes more noticeable, perhaps because the allergens were "masked" by the effect of the gluten. It is also possible that a "leaky gut syndrome," caused by the gluten intolerance, is now permitting other foods to pass through the intestinal screen and into the bloodstream.

For children who respond to this diet, allergens do seem to place further stress on the immune system, and have often been shown to worsen behavior and development.

What causes this problem? Autism seems to be so much more common than it used to be.

Researchers are not sure, but it seems likely at this time that many cases are caused by a genetic predisposition or by environmental toxicity, combined with some kind of triggering event that stresses the immune system, such as a vaccination or virus. In several cases, prolonged use of antibiotics seems to have contributed to the onset of the disorder
 

I'm already worried about my child's nutrition, and his "allergies" are causing me to further reduce his choices. If apple juice and bananas are the only fruits he will eat and he's reacting to them, how is he supposed to get by?

Fruit contains water, sugar, fiber, and vitamins. He needs to get these things from other sources.

If I can't give him milk or wheat, and if he has some other food allergies, what do I feed my child?

Most kids are okay with chicken, lamb, pork, fish, potato, rice, and egg whites. Parsnips, tapioca, arrowroot, honey, and maple syrup are usually okay too. French fries from McDonalds are currently gluten free (but may contain soy or corn.) Certain white nuts, like macadamia and hazelnuts, are also usually tolerated. Others kids may be okay with white corn, bacon, fruits such as white grapes or pears, beans, sesame seeds, or grains such as amaranth and teff (available at natural foods stores.) There's always something to feed them - even the most finicky kids seem to like sticky white chinese rice or french fries.


How do I know which foods he's allergic to?

Try an allergy elimination diet. For example, keep common allergens out of his diet for a few days and then re-introduce them, one-by-one. If you see symptoms, either physical or behavioral, try again in a few days. Try to be systematic, to be certain before ruling out a food. Two excellent resources, probably available at your library, are Doris Rapp's book, Is This Your Child, and William Crook's Solving the Puzzle of Your Hard to Raise Child.

Is allergy testing necessary?

No. An elimination diet is a reliable way to determine food allergies; however; it can take several weeks to identify the offending foods. It can also be difficult to determine which foods are not tolerated as there can be delayed allergic reactions and intolerances with symptoms appearing hours or even days after the offending food has been eaten. There are several labs that offer blood tests that can identify the possible food allergies usually within a two week period. It is definitely less stressful to bypass the process of an elimination diet. Keep in mind that many experts believe the elimination diet to be the most effective way to determine food allergies over skin scratch tests and blood testing.
 

What labs should I use for some other DAN! Protoccol testing?

Here are a few labs used by DAN! Doctors for standard testing:
The Great Plains Laboratory - The Organic Acid Profile for identifying yeast/fungal overgrowth, Amino Acid metabolites, Fatty Acid Metabolites, Drebs Cycle, etc. Phone: 913-341-8949

MetaMetrix Clinical Laboratory for the 0041 Fatty Acids - Erythrocyte test
Phone: 770-446-5483
Doctor's Data - Comprehensive Stool Analysis / Parasitology test and the Red Blood Cell Elements test (identifies toxic metals and nutrient deficiencies)
Phone: 1-800-323-2784

Immuno Laboratories - IgG Standard Food Sensitivity Assay
Phone: 1-800-231-9197

Please explain more about the different types of food sensitivities.

Hypersensitivity is a very slow immune response to the consumed food that provokes a T cell reaction. It may be involved in the gut of those with leaky gut syndrome or Crohn's disease. It is not generally accepted as a food allergy, but is a negative response to the food which begins in the gut. There are five different types of antibodies which are identified by their stem type and are known as isotypes. These isotypes are known as IgG, IgA, IgM, IgD, and IgE. In all cases the "Ig" stands for "immunoglobulin", which is another name for antibody.
 


Why is the word "cure" bandied about so in connection with this diet?

In some children, eating these foods results in their autistic behaviors. If the foods are removed early enough, these kids can experience a full recovery from "autism" (the behavioral disorder).

However, the choice of the word "cure" is unfortunate. These kids still have the underlying disorder that CAUSES autism, and it is a complex, multifactoral disorder involving genetic predisposition, disordered immune function, problems with metabolism, and/or damage to the gastrointestinal system.

Karyn's note: In my Parents Magazine article, "We Cured Our Son's Autism," I was rather distressed to see this word. I did not know that they had changed the title until the day the magazine was printed. The original title was "We Rescued Our Son From Autism."

Why should I put my child on Soy milk when it is so highly allergenic itself?

As a matter of fact, soy is not the milk substitute of choice for most. People with autism tend to be highly allergic, and soy is often near the top of the list. However, if your child does not test positive on allergy tests (IgG and IgE), and seems to tolerate soy well when it is removed and re-introduced to the diet, then gf/cf soy products are a high-protein, tasty substitute for dairy products.
 

My child is allergic to soy and the packaged rice milk is too sweet for him. I know he needs the calcium - what else can I use in his cereal, and for cooking?

Some people like to use homemade rice or nut milks, or coconut milk. For very allergic kids, there is a pleasant-tasting, low sugar potato-based product called Vance's DariFree (www.vancesfoods.com).
 

Does your whole family follow this diet?

Just the one member of your family can be GF/CF, but the majority of families with one child who responds to the diet may also find that other family members benefit as well. If you have a child who will raid the cupboards and sneak food from the fridge, or grab food from other plates, you may need to remove all dairy and gluten from the house until the child's addiction to these foods resolves. -KS
In our family, my ASD son is GF/CF, and my daughter and I are CF for lactose intolerance. As far as feeding one child in front of the other with foods the ASD child would love, think of how you would feel and don't do it until your child is over the initial period or doesn't fuss about it anymore. My son still, after 4 years GF/CF, looks longingly at pizza and begs for it, but nothing else. We have so many substitutes now that virtually everything is replaceable, including macaroni and cheese. So the other option is to make GF/CF mac & cheese and the regular and feed the kids together (but separately). -HB

Please tell me more about other food intolerances. I need to know if I suspect other food problems, should I remove them at the same time as starting the GF/CF Diet?

When the decision is made to start dietary intervention, it is highly recommended to start first with removing all gluten and casein from the diet. This part of dietary intervention is challenging enough. Do not become overwhelmed starting other dietary restrictions at the same time, unless further food allergies are confirmed. There is a possibility, in some of our children, that additional food intolerances may emerge. Food allergy testing may be necessary to confirm if there are additional food intolerances.

Some of the most common food allergies noted by parents may be (but are not limited to): soy, yeast, corn, peanuts, eggs, phenols etc.

Aren't eggs dairy?

Many years ago most of us were taught eggs and dairy were part of the same food pyramid under "dairy." However, they are not. Eggs are free of any dairy. Dairy can be from cows, sheep, and goats. Eggs are from chickens. Dairy and eggs happen to be side-by-side in the refrigerator section of the grocery store, which may add to the confusion.

Should I be concerned about calcium deficiency, if I remove dairy products?

Proper nutritional foods must replace the gluten and casein free foods deleted from your child's diet.

(The following excerpt was taken from
http://www.nomilk.com/calcium.txt )
Calcium is needed for strong bones. Green leafy vegetables such as kale are as good as or better than milk as calcium sources. Other good sources include: Soybeans, Tofu, Almonds, Brazil Nuts, Pistachios, Sunflower Seeds, Sesame Seeds, Flax Seed, Carob, Carrots, Cabbage, Garlic, Parsley, Spirulina, Chives, Seaweed, Cauliflower, Okra, Cassava, Figs, Papaya, Rhubarb, Molasses, etc. (see lists below).
Calcium is a very important mineral in the human body. Our bones contain large amounts of calcium, which helps to make them firm and rigid. Calcium is also needed for many other tasks including nerve and muscle function and blood clotting. These other tasks are so important for survival, that, when dietary calcium is too low, calcium will be lost from bone and used for other critical functions. Calcium in the blood is tightly controlled by the body, so calcium status cannot be assessed by measuring blood calcium levels.

Because of heavy promotion by the American dairy industry, the public often believes that cow's milk is the sole source of calcium. However, other excellent sources of calcium exist so that vegetarians eating varied diets need not be concerned about getting adequate calcium.

From Composition of Foods (USDA Handbook 8. Manufacturer's information.):
While milk is a source of calcium, it certainly is not the ideal way to get your daily dose. Dairy products, with the exception of skim products, are loaded with saturated fat. Fat is directly related to heart disease and cancer. Dairy products are also high in protein. There are other reasons to worry about milk, too. Cows are routinely fed antibiotics. These are then passed directly on to the milk drinkers; antibiotics are detectable in one out of three cartons of milk. Many people are also allergic to milk, and over three-fourths of the world's population is lactose-intolerant, which means their bodies lack the enzymes necessary to digest milk.
 

So how can I get calcium in my child's diet?

Great sources of calcium: Dark green vegetables, such as broccoli and collard, mustard, and turnip greens are much better sources of calcium than milk. A single cup of broccoli contains almost a fourth of the U.S. RDA of calcium. Another good source is calcium-fortified orange juice. Beans are also good sources of calcium.
Calcium is an essential nutrient and is needed for healthy bones particularly during childhood and adolescence. While it is uncertain how much calcium is actually needed, it is certain that diet affects calcium balance. Green leafy vegetables and beans are good sources of calcium that are also moderate in protein and very low in fat.
Food Amount Calcium (mg)
Acorn Squash 1 cup= 90 mg calcium
Amaranth
1 cup =140 mg calcium
Almonds
1/4 cup= 97 mg calcium
Almond butter
2 TBS= 86 mg calcium
Beet greens, cooked
1 cup=165 mg calcium
Blackstrap molasses
2 TBS= 274 mg calcium
Bok choy, cooked
1 cup=158 mg calcium
Bok Choy
1 cup= 250 mg calcium
Broccoli, cooked
1 cup= 94 mg calcium
Collard greens, cooked
1 cup= 357 mg calcium
Dried Figs
5 figs=135 mg calcium
Figs, dried or fresh
5 medium=135 mg calcium
Fortified Orange Juice
6 ounces=120 mg calcium
Great Northern Beans
1 cup= 140 mg calcium
Kale, cooked
1 cup=179 mg calcium
Kelp (Seaweed)
1 cup=170 mg calcium
Kidney Beans
1 cup=105 mg calcium
Mustard greens, cooked
1 cup=150 mg calcium
Navy Beans
1 cup=130 mg calcium
Okra, cooked
1 cup =176 mg calcium
Pinto Beans
1 cup= 85 mg calcium
Rhubarb, cooked
1 cup= 348 mg calcium
Sesame seeds
2 TBS=176 mg calcium
Soybeans, cooked
1 cup=175 mg calcium
Soymilk, commercial, plain
8 ounces= 84 mg calcium
Spinach, cooked
1 cup= 278 mg calcium
Swiss chard, cooked
1 cup=102 mg calcium
Tahini
2 TBS=128 mg calcium
Tempeh
1 cup=154 mg calcium
Tofu, firm, with calcium sulfate*
4 ounces=250-765 calcium
Tofu, firm, with nigari*
4 ounces= 80-230 mg calcium
Tofu, regular, with calcium sulfate*
4 ounces=120-392 calcium
Tofu, regular, with nigari*
4 ounces= 80-146 mg calcium
Turnip greens, cooked
1 cup=249 mg calcium
Vegetarian Baked Beans
1 cup=130 mg calcium
Wakame (Seaweed)
1 cup=150 mg calcium
Calcium Calculator http://www.calciuminfo.com/calculator/calc.htm
Nutritional Guide for Bean Flours www.doubleologic.com/asd/beansnut.html lists calcium content for variety of bean flours
There are also many calcium supplements available. Animal Parade has a vanilla flavored chewable that can be purchased at your local health food store. These can be crushed and mixed into food or beverages for those who will not chew a pill. Ask your health food store for other options.

Gluten and casein doesn't appear to be listed as an ingredient (active or inactive) for most medications. How can I prevent my child from accidentally ingesting a product with this?

This is common-believe it or not, the barium they use for upper GI series contains wheat-and this test is often done on known celiacs! The pink amoxicillin liquid also contains gluten. You can ask your pharmacist to look up these medications' ingredients in the future.
-
You will learn quickly how to read labels. There is an extensive list on www.gfcfdiet.com  of additives that will teach you what things are ok or not. Unfortunately, the label makers do not make it easy but once you know what you are looking for, you can do it almost without thinking.
 

If I am restricting my child's foods, should I give him/her nutritional supplements?

The need for supplementation must be made on an individual basis, according to your child's intake and symptoms. Some vitamin and mineral supplements, such as calcium or iron, are used to avoid deficiencies. Other types of supplements or herbal remedies are used to improve symptoms. The two types should be considered separately.

Although it is more challenging to provide a well-balanced menu when foods are restricted, the careful planning and organization required for the GF/CF diet can actually improve your child's nutrition as commonly used processed and "fast" foods are removed. Some parents find their child's food choices broadening as the diet progresses, while other children continue to self-limit. If your child eats a variety of fruits, vegetables, protein foods and GF/CF starches (rice, potato, quinoa, amaranth etc) the need for supplements may be minimal.

Calcium is a nutrient that should be evaluated closely, since all dairy products are forbidden on the GF/CF diet. If your child does not drink a calcium fortified milk replacement, or eat fortified yogurt substitute then he probably needs a supplement. Calcium is available in many foods other than milk products, such as broccoli, bok choy, legumes, and some seeds, but many growing children do not meet their requirement. Autistic children may also be deficient in zinc, which has been shown to improve appetite. A GF/CF multivitamin such as Poly-vi-sol with iron, or Rhino-vites is also good insurance for any child. A consultation with a registered dietitian familiar with the GF/CF diet can help identify potential nutrient deficiencies.

Kirkman Labs packages a good calcium powder that may be added to baking products (800-245-8282). Other supplements such as Super Nu Thera (A supplement high in B6 and magnesium) or TMG are used to ameliorate symptoms of ASD and must be considered on an individual basis. When trying supplements, introduce one at a time, so that improvements and/or side effects can be isolated
 

What do I do when we go to a party or out to another person's house and are trying to maintain my child on a GF/CF diet? At times we find it impossible to catch him before he ingests something he shouldn't.

It is a good idea to bring some favorite GF/CF goodies with you. Keep them hidden until that moment of "competition". Show the surprise treat to your child before your child eats one of the gluten and/or casein laden foods. Bring more than one goodie to be on the safe side. Also, there are two small pamplets that are great for handing out to friends and family members that give a simple explanation for your child's special dietary requirements. These are: "Alternative Treatments for Children Within the Autistic Spectrum: Effective, natural solutions for learning disorders, attention deficits, and autistic behaviors " by Deborah Golden Alecson, and; "Leaky Gut Syndrome: What to do about a health threat that can cause arthritis, allergies, and a host of other illnesses" by Elizabeth Lipski, M.S., C.C.N. Both of these books cost $3.95 each and can be found at heath food stores.
 

Could you give me some advice about how you keep products cold or frozen (dry ice?) when traveling, and where to find foods in health foods stores in Europe?

In Europe, there are lots of natural foods stores, but they carry GF products with corn, which is not ok for some kids, and their "GF" foods may contain wheat starch. Bring enough GF bread for the first few days (keep in the little tiny fridge/wet bar in the hotel room) and then make due with microwaved baked potatoes, rice from a Chinese restaurant, and lots of snacks like Poprice, cashew nuts, and potato chips. One family brought Louis Rich turkey salami to Switzerland, which is so full of nitrites it didn't go bad. It's not the diet we'd choose for them normally, but for a week or so it is no big deal!
 

How strict do I have to be?

The body will adjust, gradually, to a reduced supply of offending protein. Take away 95% of the supply from a drug addict, and it will make a big difference to begin with. However, the small supply that's left is still a very serious problem, as the body readjusts (after the initial withdrawal symptoms) to the new level.

We got the impression, over the years, that our son was hooked on the opioid peptides in much the same manner as drug addicts are, and that he was gradually able to "use" a smaller and smaller supply. Remember that EVERYONE can produce "endorphins", and that a child in opioid peptide withdrawal symptoms will (probably) do everything it can to replace these "exorphins" with "endorphins". It may even produce HEMORPHIN from blood cells (there's a constant recycling process going on). So it's no wonder it can take years to break the vicious circles.
As a result, we have become strongly concerned about grams and milligrams. However, we see no reason to bother about nanograms, like for instance possible traces of gluten left in grain alcohol after distillation, and which could therefore affect certain flavourings. Maybe we're wrong there. Maybe they matter. Other people claim that they do. Make your own choice ! However, most kitchens have lots of possible pitfalls in the gram or milligram size order. Try to handle these before using lots of energy on the nanogram problems. (JK)

Is there a standard protocol for going GF/CF?

Here is one suggestion:

Stage One - remove all casein

Stage Two - remove all wheat

Stage Three
- go through the now existing diet and check for what you missed. You may miss something; it happens to everyone. You will think you were getting the diet clean and then find out one of the items is not GF/CF. We have all done this. Do not quit!

Stage Four
-Advanced Dietary intervention for consideration. Some children may be allergic or intolerant to soy, corn or other food.
 

Stage Five - Advanced Dietary intervention for consideration:
    Artificial (synthetic coloring)
    Artificial (synthetic flavoring)   
    Aspertame (nutrasweet, an artificial sweetener)
    Artificial (synthetic preservatives BHA, BHT
, TBHQ)

For more information contact about Stage Five contact:

The Feingold Assocation
554 East Main Street Suite 301
Riverhead, NY   11901
1-800-321-3287 (U.S. only)
1-631-369-9340
www.feingold.org

Stage Six - Additional Nutritional Supplements

I'd like to have my child tested for Celiac Disease, but he's already been gluten-free for several months. Will the test results be accurate?

Unfortunately, no. After a period off of gluten, you cannot get an accurate test result for celiac disease. People are sometimes told to go back to eating gluten before the test, but many refuse because they feel so much better without it. The only advantage of a positive celiac test is that a parent will now have medical evidence to support the diet. However, clinical response is always the best indicator of the need to be GF.

In the case of an autistic child who has responded to dietary intervention, a deliberate challenge with gluten might cause severe discomfort and could lead to a serious or prolonged regression. However, you can have your doctor write an order for the test, and if gluten is accidentally ingested, you can do the test a day or two later. In this case, it's possible that the test will come up positive.

Remember, although celiac is common in families and children with autism, most children who respond to a GF diet do not test positive for CD.

Note: In the case of a child with a known wheat allergy, do not re-introduce wheat without the consent of an allergist or physician.
 

I am breast feeding him and am wondering if you have met anybody who has a child with autism and has found an improvement in symptoms after weaning. I have read several articles that say breastfeeding is fine because the casien protein is different. Yet I find that he for whatever reason that he feels weak and falls apart if he doesn't nurse often.

Unfortunately, you have been misinformed. Researchers report that the same problem occurs with human casomorphin, and we have had several letters from mothers who said that the child did not improve until he was weaned. The weakness you observe may be an opiate withdrawal. Although I'm a big fan of breastfeeding and would never suggest weaning a healthy child, my experience is that this could prove to be extremely helpful for a child on the GF/CF diet.

Do you have any information on a sweetener called XYLITOL?

It's also called BIRCH SUGAR or THE ULTIMATE SWEETENER. Other than the astronomical cost, it seems to good to be true. It's sold through Miss Roben's, and also directly by The Ultimate Sweetener, and it tastes and bakes almost exactly like sugar. They claim it's "Safe for Candida". I can find very little reference to it on any of the Yahoo groups, other than parents like me asking about it with little or no
response. It's not supposed to promote yeast reproduction, but like many other sweeteners, it can cause GI distress in some individuals, and it is not appropriate for those with birch allergies. I suggest searching "xylitol" on the web and seeing what you can find out.

I have come across several studies speculating that oats might be suitable for people on a GF diet. Is this true?

We have heard reports for several years about pure, lab-grown oats being essentially gluten-free, or that the amino
acids in oats form a protein that is differentiated from gluten, but this theory and the studies that support the idea of giving them to people with celiac disease are not borne out by clinical observation. Patients with CD and autism simply do not benefit from a GF diet with oats the way that they do from a GF diet without oats. They also cause outright gluten reactions in sensitive individuals. Therefore, for our purposes, we must consider oats to be unsafe.

I happen to read about the supplement DMG with folic acid. When I asked about DMG to her doctor she said that she is not aware of it.
Will the DMG have any side effects? Can it be taken without prescription?

DMG is a food supplement available at most health-food stores, and the only side effect we've heard of is temporary hyperactivity in some children, but not all. We're told that if you add folic acid supplementation, this effect should go away.
 

My child responded dramatically to dietary intervention and no longer has autism. However, he has now been diagnosed with ADD/ADHD. Do you think these are on the same spectrum?

This is a common story. I used to think that Autism and ADD were on the same spectrum, but I no longer think so. Based on the typical family history of ADD in these kids, my theory is that infants with ADD are extremely sensitive to insults to the immune and nervous system, so they are much more highly predisposed to autistic enterocolitis than the normal population. I don't think ADD is autism residua -- I think this is where they would have been if not for the autism.

This is not to say that ADD isn't also treatable. I just think that it's where the kids often start out and end up after fighting a successful battle with autism.

People with celiac disease suffer from gut damage caused by a type of allergy to gluten, and this illness has never been associated with autistic behavior. If these patients have a leaky gut, why don't they experience neurological symptoms?

Some Celiacs report symptoms like mild confusion and "brain fog" after ingesting gluten. However, the damage from Celiac tends to be localized in the gut wall, and the spaces between the cells may not be large enough to allow many peptides to pass through.
What we are seeing in autism is most likely a combination of a highly leaky gut and another factor, such as enzyme inhibition. If I remember correctly, there are some very good discussions about this on Dr. Bradstreet's website -- I think it's www.gnd.org -- that accounts for why the kids are also so deficient in enzymes like DPP-IV that would help break down these peptides. Autism has been compared to a train wreck -- several things need to go wrong at once.
 

Do we need to worry about gluten-containing lotions, shampoos, and toothpaste being absorbed through the skin?

Nicotine patches, birth-control patches and other trans-dermal applications of medications are proof that the skin does absorb many things (and pass them to the bloodstream). However, the molecules in gluten are too large to pass through the skin, according to John Zone, MD (a dermatologist quoted in the Spring 2003 issue of Living Without Magazine).

Most often the problem occurs from hand to mouth (i.e. touching playdoh and touching one's face), which is a good reason to avoid giving our kids much access to anything that poses a threat. If your child's school has a sensory table, you can request that it be filled with rice or dried beans, instead of macaroni or gluten grains. Likewise, we suggest that you volunteer to be the Playdough Parent and keep the classroom supplied with a safe version that you don't have to worry about.

We are not too concerned about shampoo, unless you have a child who is likely to try to drink the stuff. But toothpaste is an entirely different matter, since some of it is likely to be ingested, rather than spit out.

As I am learning to read labels I see monosodium glutamate and don't know if that is ok? Anybody know what it is?

MSG is a flavor enhancer. It works directly on the taste receptors in your mouth. Some people seem to tolerate it, while others have dramatic or subtle reactions such as fatigue, bloating, headache, etc. (sometimes called Chinese food syndrome). Chemicals like these may not be a problem for your family, but then again, they might. Although MSG itself doesn't usually contain gluten (although it may) or casein, most prepackaged foods that contain this ingredient often contain other additives like flavorings that might not be GF/CF. Here is one mom's opinion:

"MSG is an unnecessary additive. SO many people are bothered by it or suspicious of it that restaurants make a big point of saying they are MSG free. Personally, MSG doesn't bother me but my children don't need to take the chance."
 

I am wondering if anyone else is having problems with school and keeping them on the diet? I have sent a note saying "Please don't give him dairy, wheat, corn, or soy." Today I came in and they were giving him Popcorn!

My kid doesn't eat ANYTHING that isn't sent from home. He's almost ten now, and this policy has been good for him, because succumbing to temptation outside of the house has simply never been a option. I don't think it would occur to him to take food from anybody without our permission.

We always made sure there were backup snacks and birthday party treats at school for emergencies. I think the school took this seriously because they could see how much we took it seriously.

We once got a note from a mom who said that her son had been strictly GF/CF for months without an improvement. I asked what he was eating, and she gave me a long list including expensive GF pre-packaged products. Then she ended her letter by saying, "Of course, that's just what he gets at home. I have no idea what he gets in his school lunch, or what they're using for food reinforcers in his ABA program."

Definitely try this - you might see a real difference.

Is it okay to be on the diet and allow occasional infractions if there are no obvious reactions?

Dr. Reichelt has told me in no uncertain terms that the effects of true opiate-type infractions are slow and insidious. He has found that the opiate levels in the urine are severely compromised by infringements, regardless of the absence in some kids of immediate and apparent reactions.

When my stepson has an infraction, it shows up as severe behavioral problems exactly three days after eating the offending food.

This really confused me, because my own son reacted within hours, and his reactions were more physical.

The answer to this appears to be connected with the fact that my son's problems with gluten and dairy were two-fold. On one hand, he clearly had the opiate problem that is responsible for autistic behaviors in some kids (long-term effect). On the other, he is actually IgG or IgE allergic to milk and wheat (immediate effect).

This may explain why some autistic kids donlt show an immediate improvement on the diet, but whose behavior and learning gradually get better and better; and why some kids show an immediate physical response in bowel movements, screaming, ears, etc., but their autism doesnlt get much better in the long run.

Hope this helps!

Best wishes,
Karyn Seroussi

What percentage of children will respond to dietary intervention?

DAN! docs used to try to be conservative about this, and say at least a third, and then, after seeing more patients, they said two thirds. Now that they have seen hundreds or thousands of patients, most tell us that they believe that almost every ASD child will benefit from this diet. Many will need further modifications (i.e. removing grains or sugar) before the full benefits are realized.

However, age plays a big part in how quickly results will be seen. We can probably say that the response will be dramatic in more than two thirds of the children under three, and perhaps more subtle, but still helpful, in at least two thirds of older children. We think those are pretty good odds.

Karyn Seroussi, ANDI 
www.autismndi.com 
 

Which foods contain phenols and salicylates? How do I know if my child tolerates them?

Most foods, esp. fruits, contain some phenols. Many contain salicylates. Some contain both, in varying amounts. The best rule is to look for patterns, but make decisions based on your observations for your child.

Many kids don't tolerate apples, but it can vary. Bananas are a common problem, but it may be as simple as the fact that they are very high
in natural sugars.

Here's what I know about salicylates:

Salicylates are a family of plant chemicals found naturally in many fruits, vegetables, nuts, herbs and spices, jams, honey, yeast extracts, tea and coffee, juices, beer and wines. They are also in flavorings (eg, peppermint), perfumes and some medications (aspirin is a member of the salicylate family). Salicylates have a natural preservative action and are concentrated near the surface of fruits and vegetables. Their levels are higher in unripe fruits and decrease with ripening.

Salicylates are high in dried fruits, berries, oranges, apricots, pine
apples, cucumbers, gherkin, tomato sauce, tea, endives, olives, grapes, almonds, liquorice, peppermint, honey and Worcester sauce.

One should avoid aspirin and medicines containing aspirin. All medicines colored orange, red, green and yellow should be avoided. Medicines, toothpastes, vitamin supplements and lozenges containing synthetic flavorings and colorings should also be avoided.

There's a  chart with other foods containing phenols & salicylates on http://www.gfcfdiet.com/SalicylatesGFCFfood.htm

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