Chapter 10
Frequently Asked Questions
By Dr. William Shaw

 Do I have to get a physician’s approval to get blood, urine, hair, or stool sample tested?

Yes. A medical practitioner who is licensed to order urine testing in your state must approve the test order. Regulations vary from state to state so an approved medical practitioner could be a medical doctor (M.D.), osteopath (D.O.), nurse practitioner, chiropractor (D.C.), or naturopath (N.D.). 

 How often should I get my child re-tested?

As a general rule, every three to six months may be satisfactory for organic acid testing. However, I recommend retesting be done sooner if  the child does not respond favorably by the end of one month of antifungal therapy since the yeast or bacteria might be resistant to the drugs used for treatment.

Allergies might be checked every year or so since they may change with altered diets. The immune deficiency profile probably does not need to be rechecked if normal. It might be useful to recheck in a year or so if there are significant abnormalities of the immune system.

Heavy metals should be rechecked during removal of metals to monitor therapy until normal values are obtained. 

 My physician says everyone has some yeast in his or her intestine. Why isn’t everyone sick?

The most important question is not whether yeast are present or not. The critical factors are the quantity of yeast and the kinds and amounts of toxic products they produce. Everyone in this society has carbon monoxide in his or her blood from auto exhaust and secondhand cigarette smoke and can tolerate a low value. When the amount of carbon monoxide increases, some individuals feel depressed, some have headaches, some develop muscle weakness, some feel tightness in the chest or angina, some experience nausea and vomiting, some become dizzy, some develop dimming of vision. As values further increase, symptoms may include convulsions, coma, respiratory failure, and death. Some individuals who recover from severe carbon monoxide poisoning may suffer residual neurological damage. Different people will respond with different symptoms to the same concentration of carbon monoxide.

 Why is it surprising that exposure to a wide range of toxic yeast products at different times and at different ages might produce different symptoms?

If I suggested that there were a carbon monoxide connection with all of the diverse symptoms associated with carbon monoxide exposure, no one would challenge me. The reason that the carbon monoxide connection is accepted is because carbon monoxide can be easily measured in blood. The toxic yeast byproducts were only recently discovered. As knowledge of them increases, acceptance of the yeast-related illnesses will increase.

 My child is currently taking antibiotics now. Should I wait until after the antibiotics until I get the organic acid test or stool tests for yeast?

Many have assumed that if the child has a significant yeast overgrowth of the intestine while on antibiotics that the yeast overgrowth will disappear when the antibiotics are stopped. However, this is not necessarily the case and the yeast overgrowth may even become worse especially if the person is on a high sugar, high carbohydrate diet. There is no evidence that the yeast overgrowth will spontaneously disappear on its own. Furthermore, the yeast overgrowth may be suppressing the immune system, preventing your child from recovering from the infection. The sooner the yeast problem is controlled, the sooner the vicious cycle of antibiotics and frequent infections may be broken.

 Why should I get the Organic Acids Test? Why don’t I just start the nystatin or other antifungal treatment? 

Some children with autism don’t have the yeast problem but may have an overgrowth of the Clostridia bacteria. Treating these children with an antifungal could make the bacteria problem even worse. Also, if your child has the yeast problem, he will likely require major changes in his diet (and that of your family) and drug therapy for six months or longer. I think that it will be very difficult to make a commitment to the diet and drug therapy if you are not even sure if your child has the yeast problem. Your child could have a yeast overgrowth with drug-resistant yeast and if you don’t do the testing beforehand, it would be difficult to know what is happening. Also, if the problem is severe, the yeast die-off reaction may be more severe and you may want to take additional steps to control the yeast before using antifungals.  And it may be very difficult to get your doctor’s cooperation for the prescriptions and insurance reimbursement if there is no evidence that the yeast problem even exists.

 Where can I get the Organic Acids test done?

The organic acids test is available from:

The Great Plains Laboratory Phone: 913 341-8949
11813 W. 77th St. Fax: 913 341-6207
Lenexa, KS 66214

 What other information will I get from the Organic Acids Test?

The test evaluates all of the well-defined inborn errors of metabolism that can be detected with this technology called GC/MS such as PKU, maple-syrup urine disease, and many others. In addition, the organic acids test checks for many other abnormalities such as vitamin deficiencies and abnormal metabolism of catecholamines, dopamine, and serotonin. We currently quantitate 66 substances but also evaluate other substances that are not quantitated. Some of the other biochemical abnormalities common in autism include elevated uracil and elevated glutaric acid.

 I already had the urine organic acids test done earlier by another lab. Can’t I get the information from the earlier test?

No. No other laboratory routinely analyzes the same compounds as this laboratory. Most test for the inborn errors of metabolism and that’s all.

 I have an HMO and they have to send the organic acids test to a certain lab. Is that OK?

No. No other laboratory routinely analyzes the same compounds as this laboratory including Labcorp, SmithKline, or Mayo Medical laboratories. If you do not specify our laboratory, your child’s urine will be sent to one of the large reference labs, which cannot accurately evaluate your child’s condition. Most test for some of the inborn errors of metabolism and that’s all.

 Do most insurance companies reimburse for your tests? 

Yes, but we cannot guarantee how much (if any) reimbursement will be given. Many health care plans also require a preauthorization. Most HMO’s will pay but you may need some additional documentation to get payment. Use the information in this book to indicate to your HMO why no other labs are acceptable.

 What about reimbursement for Medicaid and Medicare? 

The Great Plains Laboratory is now set up for Medicare but does not accept Medicaid.

 Can I test my infant who is having frequent ear infections or other frequent infections and who now seems “spacey” to see if they are developing the abnormal yeast byproducts?

Yes. The Great Plains Laboratory provides tape-on bags to collect the urine from infants or children who are not potty trained.

 My child has a large number of food allergies. Could this be related to the yeast problem? When should I get food allergies tested? 

Yeast can exist in two forms: a floating single cell form or a colony form. When yeast form colonies, they secrete enzymes such as phospholipase and proteases that break down the lining of the intestinal tract in order to attach the yeast colony to the intestinal wall. The holes made by the yeast produce a condition called leaky gut syndrome in which large undigested food molecules are absorbed into the bloodstream and elicit food allergies. Once the underlying yeast problem is controlled, the holes in the intestine will heal. Then less undigested food gets into the blood and the number of food allergies will decrease. I recommend that the allergy testing be done three months after the yeast problem is controlled so that you will have fewer allergies to deal with and therefore fewer foods to restrict from the diet. The yeast control diets are already complicated enough without further dietary restrictions and/or allergy desensitization shots.

 Where can I get the Food Allergy Tests done?

The food allergy test, which is a blood test, is available from:

The Great Plains Laboratory Phone: 913 341-8949
11813 W. 77th St. Fax: 913 341-6207
Lenexa, KS 66214

 Do the food allergy tests at The Great Plains Laboratory check for wheat and dairy sensitivity?

Yes, both the basic and comprehensive food allergy tests check for wheat and dairy sensitivity. We have found that children with autism have increased amounts of IgG antibodies to both wheat and dairy.

 Do I need to do both Food Allergy Tests on blood as well as the Gluten/Casein Peptides Test?

Most children with autism have both elevated IgG antibodies to gluten and casein as well as elevated peptides in the urine.  If the allergy test is positive, it is not essential to do the peptide test also. However, if the allergy tests for wheat and dairy were negative, it would be a good idea to do the peptide test.

 How does the gluten/casein sensitivity common in autism and other diseases relate to the yeast problem or are they separate issues?

There does appear to be some relationship between the two medical problems. Gluten and casein are proteins. Gluten is one of the major proteins in wheat. Casein is the major protein in milk and cheese but is an additive in a wide variety of other foods such as soup and TV dinners. If these proteins are absorbed before being completely digested, the undigested pieces of protein enter the brain and attach to opiate receptors in the areas of the brain controlling language and other areas of the brain and impair the brain function. These pieces of protein called peptides are eventually eliminated in the urine where they are measured.

The test is called the urinary peptide test. I suspect there would be less of a problem with these molecules if the yeast is controlled and am working to obtain a grant to test this hypothesis. In the meanwhile, I advise you to do the gluten/casein urinary peptide test three months after the yeast have been controlled. The elimination of these foods is a difficult process and I would advise doing the urinary peptide test before implementing the diet. I think that you will be more highly motivated to implement the diet if you know there is a definite problem that cannot be controlled by other means.

 Where can I get the Gluten/Casein Peptides Test done? 

The Great Plains Laboratory Phone: 913 341-8949
11813 W. 77th St. Fax: 913 341-6207
Lenexa, KS 66214

 Will drugs or any of these nutritional supplements interfere in the organic acid test? 

No, there is no interference from any known drug or supplement since the technology of mass spectrometry is the most accurate technology available. If your child takes vitamin supplements like vitamin C, then high concentrations of vitamin C will be detected in the urine.  However, if antifungal supplements or drugs are taken before the test, you will probably get a lower value for the yeast byproducts. I advise you to get the test first so that you will know what the starting point is.

 Will the use of nystatin interact adversely with other medications the patient is taking?

Nystatin is not absorbed from the intestinal tract in any appreciable quantity unless extremely large doses are used. Therefore, there are no adverse reactions with drugs such as antiseizure medications, antidepressants such as Prozac or Elavil, or any other medications. If you use antifungals that are absorbed from the intestinal tract such as Lamisil, Sporanox, Diflucan, and Nizoral, then drug interactions must always be considered. Other drugs used simultaneously may be more potent or make the antifungal more potent when these latter drugs are used.

 Could there be adverse reactions to the food colors and flavors in the nystatin?

Yes, that is a possibility. If that is the case, then you may have to use the pure nystatin powder and disguise it in food. One way to disguise it might be to combine it with the herbal sweetener Stevia. Stevia is available in most large health food stores.  A good compounding pharmacy in your area is helpful since they can often mix Nystatin into a suspension using Stevia and hypoallergenic flavoring.

 My child has a yeast infection in the genital or anal area. Does this indicate a yeast overgrowth of the intestinal tract?

Yes, but it is impossible to know for sure without testing to confirm it.

 If my child has no external signs of yeast such as thrush, or anal or genital rashes, could he still have the yeast problem?

Yes, in many cases the behavioral abnormality is the only clue to the underlying yeast overgrowth of the intestinal tract.

 Could intermittent low-grade fever be a symptom of yeast infection?

Fever often accompanies yeast infection of the blood stream, which is termed systemic yeast infection. To test for yeast in the blood, you need to have a yeast culture and/or yeast antibody tests on blood. Remember that these tests may give a high percentage of false negative results. Your child may also have an intestinal yeast overgrowth as well.

 My insurance company won’t reimburse for any lab test dealing with autism. What can I do?

Many different diagnoses that accurately describe the medical condition of your child can be used for insurance reimbursement and many times reimbursement can be obtained when an appropriate diagnosis is used.

 My child has a white coating of the mouth. Could this be a yeast problem?

Yes. One of the most common yeasts in the intestine is Candida albicans. Albicans is a Latin word for white and a white coating of the tongue may very well be Candida.

 What foods have Lactobacillus acidophilus in them?

Yogurt is high in Lactobacillus acidophilus. The unflavored kind or plain is more highly recommended than the flavored because yeast may grow in the kind with fruit on the bottom. Some milk now also has acidophilus added. Just read the labels. However, most children with autism are sensitive to casein so the use of these sources may not be wise.

 What kind of changes might I expect with the antifungal drug therapy?

Results are highly variable but the most usual improvement noted is increased focus and concentration. Other improvements may include increased and clearer vocalization, less stimming, decrease in aggressive or self-abusive behavior like head-banging, better sleep pattern, increased socialization, and more eye contact. Antifungal therapy may help individuals with normal or marginally elevated yeast metabolites but the percentage of those benefiting is lower than in individuals with high concentrations of these metabolites. Antifungal therapy is not usually a cure for autism by itself but may significantly improve the life of the child and his family. Antifungal therapy combined with other measures such as gluten and casein restriction, elimination of food allergies, and behavioral therapies have been successful in reversing autism in two cases in which these therapies were started at a very young age. Their accounts are included later in this book. Both of these successful families adopted very similar therapies completely independently of one another and started treatment about two years of age. Only large long-term studies will determine if these successes can be translated into successful therapies for the majority of children with autism.

 What side-effects may be associated with the use of Flagyl or oral Vancomycin to control the overgrowth of Clostridia in the intestinal tract?

The main side effects of this drug are probably due to the release of bacterial toxins as the Clostridia and other bacteria die. Side effects may be very severe and usually last from 2-10 days. The child should be under close medical supervision while on this drug.Side effects may include severe diarrhea, heart palpitations, extreme lethargy, and fever with drenching sweats. Talk to your physician about the use of adsorbent materials such as Bentonite or charcoal (available in pharmacies and health food stores) to adsorb the toxins since they may decrease the die-off reaction.  The child should not start both the Flagyl/Vancomycin and antifungal therapy simultaneously because the combined die-off reaction may be too severe. Both Flagyl and Vancomycin will kill the friendly bacteria and it is very important to start Lactobacillus acidophilus as soon as the Flagyl/Vancomycin therapy stops or there may be a recurrence of the Clostridia or a yeast overgrowth. It is OK to continue nystatin during Flagyl/Vancomycin therapy. Just don’t start the antifungal and antibacterial therapies simultaneously.

 My child has urinary tract infections or a vaginal yeast infection. Could the microorganisms in the urinary tract affect the test results?

Microorganisms might contaminate the sample and lead to erroneous results if the urine stands too long at room temperature. We suggest that you freeze the sample right away to minimize any effects of such contamination since no new metabolites will form while frozen.

 My child only eats bread, dairy products, cereal or pasta. How can I change his diet without starving my child?

Parents have reported to me that their children may refuse the altered diet for three or four days and then give in and eat the new foods. I think that it would be wise to consult your physician and/or a dietitian before starting the diet. I do not think a short time without eating is harmful to most children but might be significant if your child has special medical problems like diabetes. Some children have not adjusted well to the gluten/casein free diet and may have to go back to gluten or casein containing foods because of substantial weight loss on the restricted diets.

 How long will my child need to be on the antifungal therapy?

This is a difficult question that will only be answered by future research. I have personal knowledge that many children helped by antifungal therapy regress following the discontinuation of therapy even after six months to five years of antifungal treatment. This regression is virtually always accompanied by an increase in abnormal yeast metabolites. Discovering a way to overcome this resistance should be a national priority for future research. I recommend a minimum of nine months of antifungal treatment for children with autism/PDD if the intestinal yeast overgrowth is significant.