Extracted postings are available in other autism files. The naming convention is: AUTISM94 (1994 autism postings from the Celiac List) AUTISM95 (1995 autism postings from the Celiac List) AUTCEL94 (1994 gluten postings from the Autism List) This file. AUTCEL95 (1995 gluten postings from the Autism List) Creation of these files is on hold due to lack of manpower. The following is an edited version of emails which have appeared on the Celiac LISTSERV(R). As with any email on this list, there can be no assurance that the information contained herein is accurate. This is not medical advise. Feedback to the Listowners.Disclaimer: Verify this information before applying it to your situation. ======================================================================== Thu, 5 Jan 1995 12:15:22 GMT From: Brenda O'Reilly autism_aia@PIERS.DEMON.CO.UK Subject: Biochemical Research into Autism ENZYME AND SULPHUR OXIDATION DEFICIENCIES IN AUTISTIC CHILDREN WITH KNOWN FOOD/CHEMICAL INTOLERANCES B. A. O'Reilly*. Director, Allergy-induced Autism Support and Research Network (UK), 3 Palmera Avenue, Calcot, Reading. Berkshire, RG3 7DZ, United Kingdom, and Dr R. H. Waring, Department of Biochemistry, Birmingham University, Edgbaston, Birmingham, B15 2TT, United Kingdom We are currently carrying out studies to determine whether children with autism and known food/chemical intolerances have a deficiency of phenol-sulphotransferase-P enzyme and/or a low capacity to oxidise sulphur compounds. On the results obtained so far, a ll 18 children have a low enzyme level, and some have a low capacity to oxidise sulphur compounds. This enzyme metabolises phenols and amines. Therefore with a reduced level, these children will be unable to fully metabolise foods and chemicals which contain phenols. Many drugs are metabolized on this pathway, and these children do have adverse reactions to various medications. Courses of antibiotics result in a worsening of autistic behaviour, sedatives have the reverse effect, and anaesthesia is known to cause difficulties. Amines are also metabolized with this enzyme, and a deficiency would cause a build-up of substances such as serotonin, dopamine and noradrenaline. If, as a result of this build-up, serotonin, dopamine, noradrenaline, and other body chemicals are being further metabolised this will produce substances similar to phytotoxins, for example. This could happen due to phenolics competing for and inhibiting amine oxidase. Inert neurotransmitters could also be manufactured, such as octopamine, which is the phenol analogue of noradrenaline, as well as substances similar in structure to morphine or LSD, which may well explain the bizzare behaviour seen in autism. The majority of children in this category - autistic-like children who were perfectly normal up until a certain age (mainly between 18 months - two years, although this varies) - have allergy to or intolerance of many foods/chemicals, the main offenders being wheat, cow's milk and salicylates. Their family histories show asthma, eczema, migraine, hayfever, plus many other allergy-related conditions. Their siblings display learning difficulties, dyslexia, etc. and the affected children have a strong tendency towards being left-handed or ambidextrous, this mostly occurring when they transfer from their normal state to their autistic-like state. Many metabolic processes can be disturbed by phenolic compounds, and so cause many physical problems which are only slightly noticeable in childhood, such as excessive thirst, night sweats, facial flushing, increased pulse rate, abdominal disturbances, etc, but nevertheless are present, but not investigated as a part of their mental disturbance. The children display cravings for the very substances which do them damage, which are not only contained in foods, but also in the non-food items they mouth, suck, chew and ingest, eg. plastics, rubber, paper, metal, cement, soap, perfume, food colourings, and at the onset of autism, their diet changes completely. They become picky eaters, only eating very few foods, and start to eat non-foods to great excess. The results so far have proved that there is a metabolic disturbance in these children, and we now hope to carry out further studies on more children and different biochemical pathways to determine whether there may be other factors contributing to this condition. Any comments on this abstract or any other related topics that may be of interest to me, either post to the news group (quote Brenda O'Reilly), or e-mail me at: autism_aia@piers.demon.co.uk Fri, 6 Jan 1995 03:05:47 GMT From: Kevin Dopko u dopk8490@MACH1.WLU.CA Subject: Re: "Inappropriate" laughing I know of Parents of a 5 yr old that laughs giddy and uncontroled. Quote " Wheat and sugar caused this disorder in Matthew. When wheat and suger was removed from his diet we noticed noticable improvememt. He laughed at jokes etc. not at inappropriate times as much if at all. He is still happy but doesn't laugh for no reason, although he does sing alot. 9 Jan 1995 12:28:45 -0500 From: CBraffet@AOL.COM Subject: Re: Biochemical Research into Autism Brenda, Comments on your research? I can start with thank-you. Your investigations may help shed some light on my son's autism and we would very much like to know more. My son has been gluten/casein free for about a year now and it has been the best year ever. He is no longer aggressive, ever, and no longer has wide and wild mood swings. His nocturnal bowel movements and the consequent feces smearing is gone, his compulsive eating and consequent weight problem is also no more. He is now able to go shopping with me and go about in the community without bolting away or screaming. He is growing tall, slim and looks healthy. What has not changed are his tactile defensiveness, what appears to me to be a visual field integration problem, and verbalizations remain limited. His activity level has gone down, down, down, until now he has to be encouraged to do something other than sit on his bed looking out of the window. (Quite a change from the whirlwind of activity that kept me exhausted just one year ago and a new cause of concern.) Clearly his difficulties are tied in with his particular metabolism of foods. My fear is that I've not identified all that is doing damage to his system and that his life could somehow be improved if I would only figure it out. It would help immensely if the mechanisms by which the gluten/casein proteins cause problems are definitively identified, perhaps we could extrapolate from that point. Please post your progress with your investigations. Don't let our silence on the list discourage you. We are waiting to hear more! Thanks, Chris Braffet Item number 13677, dated 95/01/10 16:02:52 -- ALL Date: Tue, 10 Jan 1995 16:02:52 -0800 From: (portia@CYBERVERSE.COM) Subject: Re: Biochemical Research into Autism I Dear Brenda O'Reilly: Welcome to the list and thank you for inputting your excellent article re sulphur oxidation deficiency and related symptomology in autism. My son has been on the casein and gluten free diet for 4 months. We started 7 months ago by eliminating cow's milk and wheat; Dov went through severe withdrawl, crying, lethargy, irritability for about 2 weeks followed by a dramatic improvementnin behaviors and health which have continued to date. The improvements include: stopped stimming by gazing at lights and patterns, stopped biting things, people, his hands, stopped excessive drooling, greatly reduced hyperactivity, toe walking, shrieking, normalized sleep habits (went from taking hours to go to sleep- usually by midnight or 1AM, to going to sleep quickly at abt. 9:30 PM and sleeping through til 7 or 8AM). He also gained 4 LB and 4 inches in height in 4 months following dietary intervention. Rough areas on elbows and knees disappeared too. All this has enabled him to learn more easily as he is not continually racked by metabolic storms. The diet has not been a cure for autism; it took him half the way there - now what can we do? We feel that there are still other metabolic condition(s) bothering him. Would it be good to remove (other) foods which contain peptides with disulfide bonds? Would taking digestive enzymes help? And finally, what if anything is known of treatment/ clinical implications for sulfotransferese defect? I read of an enzyme protein called 'disulfide isomerase' - "which catalyses disulfide bond formation in a number of proteins including wheat gliadins and glutenins." (from COELIAC DISEASE, by WK Dicke, 1992); have you heard of it? Thanks for your reply and again, it's great to have you on the listserve! -Portia Item number 14145, dated 95/01/22 01:11:35 -- ALL Date: Sun, 22 Jan 1995 01:11:35 -0500 From: Scott Davis (SHDavis@AOL.COM) Subject: Re: Enzyme Def. Our son has several allergies, and has responded very favorably to a gluten free, cassin free, soy free diet. Is there an indication here (h i fun. lang delay but not mute, tactilly defensive and hyper acute/ sensitive hearing. let me know thnks S. henderson Item number 15030, dated 95/02/16 15:13:45 -- ALL Date: Thu, 16 Feb 1995 15:13:45 GMTReply-To: From: "Lisa S. Lewis" (lisas@PUCC.PRINCETON.EDU) Subject: Sulfur-Transferase Several people have written to me about this. If you look back in the logs to this list you will find (from December?) a post by Brenda O'Reilly. Brenda, if you're reading this please feel free to jump in! Anyway, she summarized a lot of what is known about this. Deb? Are you there? Again, please jump in as you certainly have something to add here! For those of you who have gotten the packet I wrote on gluten and casein the following will be a repeat. Forgive me for quoting myself: Preliminary studies by Rosemary Waring, of the University of Birmingham, UK, suggests an abnormality in the sulfur-transferase system in autistic people. Of forty children tested, all showed extremely low capacity to oxidize sulfur compounds. The enzyme deficiency found would mean that these children will be unable to fully metabolize certain foods and chemicals that contain phenols and amines. Thus, substances that should be metabolized would build up to abnormal levels, substances which include serotonin, dopamine and noradrenaline. The children most likely to show this deficiency (based on her sample) showed normal development for the first 18 months to two years of life, and also show family histories of asthma, skin problems and migraine, as well as sensitivity to foods (especially wheat, milk and salicylates.) Many metabolic processes can be disturbed by phenolic compounds and casue many physical problems that may not have been previously thought connected to autism (e.g. excessive thirst, night sweating, facial flushing, reddened ears, etc.) The variation in serotonin metabolism may be less significant than another outcome of a sulfur-transferase abnormality--namely, the effect this deficiency would have on the permeability of the intestinal lining. One outcome of an improperly operating sulfur-transferase system is insufficient connective tissue in the gut wall. Thus, this deficiency could be yet another reason that the gut wall would be "leaky." This would meant hat the improperly metabolized proteins (such as gluten or casein) would be able to escape the gut lining into the bloodstream. I know of no lab in this country that currently tests sulfur-transferase. Nor is there any standardized, recommended treatment. [Note: the English and American branches of the AIA -don't recall what it stands for-- do recommend a stringent dietary regimen which excludes, in addition to gluten and casein, contain high levels of phenols and sulfites. They sometimes recommend modulating the pH of the gut in some cases, and for some children a low protein diet. Again, Brenda or Deb, input here would be great.] End of quote I don't know if this helps or makes things more confusing. A lot of this was discussed many months ago on this very list. You might want to go through the archives...that is what they are there for. Lisa Item number 15157, dated 95/02/20 12:57:17 -- ALL Date: Mon, 20 Feb 1995 12:57:17 +0000 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Dietary Intervention Some fellow listmembers may be aware of my interest and involvement in research into autism and, in particular, with the possible effects of dietary intervention in the form of removing certain foods (principally gluten and casein) from the diet of people with autism. A number of members have been kind enough to discuss the issue with my daughter who is making a study of these parental reports. The people we have contacted have been those who have reported to this list and, on the whole, reported results which are beneficial to varying extents. It has to be agreed that our selection process would mean that only those who report success would be included in our survey so a very high success rate would be expected. We would very much like to make contact with those who have experimented with gluten and or casein free diets and found no effect or perhaps only harmful results. In short, quite a lot of people contact us and ask about such interventions and we ask to be kept informed of progress. for those who do not contact us we are never sure whether they gave it a try or whether it was no use and so they abandoned it. If you feel able to help, please contact me via the list or privately if you prefer. Alternatively, comments pencilled on a $50 bill will be equally gratefully received. Also, of course, if your experiences are good, we would love to hear from you. Thanks for the help, Paul Shattock Item number 15197, dated 95/02/21 08:30:00 -- ALL Date: Tue, 21 Feb 1995 08:30:00 EST From: Richard Crooker (0003834619@MCIMAIL.COM) Subject: Re: Dietary Intervention Dear Paul, Please add us to your group of parents who have seen improvement after removing gluten and casein. We're also being careful about sulfites, now, and have also removed orange juice, peanut butter, soy, and msg, after our child tested allergic to them. This isn't easy--but it definitely seems to be worth it. I'd sure like to know about any tests being done, research, etc., so keep me in touch-- Thanks, Barbara Crooker Item number 15303, dated 95/02/22 20:58:51 -- ALL Date: Wed, 22 Feb 1995 20:58:51 GMT From: Brenda O'Reilly (autism_aia@PIERS.DEMON.CO.UK) Subject: Low Sulphate Research at Birmingham University UK Low Sulphate Research at Birmingham University I have seen several postings on this list regarding our research at Birmingham University UK. I did a posting last December and had a lot of responses, but the general feeling was that it was too technical. Therefore, I would like to explain in more detail about the children in this category and what signs to look for. Lisa Lewis has already explained a lot about the problem. Thanks, Lisa! However, I thought it might make things easier to describe the symptoms I and many other parents have seen, what foods cause the worst reactions, and what you might want to try, based on children who are using these methods. The children have many physical signs which are not picked up as part of their behavioural problems. These may include: red face and ears, dark circles under eyes, bloated stomach, diarrhoea, vomiting, colic as a baby, runny nose, hives, eczema, asthma, always thirsty (VERY COMMON), sweating at night, especially on head, unexplained high temperature, with or without vomiting. They may be affected by medications. These may make their autism worse, or cause overactivity, or may have the reverse effect, ie. pre-medication may not make them drowsy, but more active. As well as the above, it is worth watching whether behaviour gets worse after eating, either about an hour later, or the next day or particularly during the night. We have seen many children reacting to many foods, in particular, wheat, cow's milk, oranges, tomatoes, chocolate, bananas, cheese. These foods and many others contain amines and phenolic compounds. Both of these are broken down by a substance called sulphate which is produced in the body from sulphur-containing amino acids. From the tests we have run, we have found that these children do not have either enough sulphate, or the enzyme that uses this, called phenol- sulphotransferase-P. This means that they will be unable to get rid of amines and phenolic compounds once they no longer have any use for them. These then stay in their body and may cause adverse effects, even in the brain. We are unable to say exactly which foods cause a problem in each child, but the above list is a guideline. You need to observe your child and see which foods cause the worst problem. The foods then need to be cut down or removed, WITH THE CO- OPERATION OF YOUR PAEDIATRICIAN AND DIETICIAN. You should then start to see an improvement in behaviour, although this is by no means a cure for autism, it simply helps some of the symptoms like hyperactivity, not sleeping, aggression, self-injury. Things that also help are: digestive enzymes, which enable them to digest their food, vitamin and mineral supplements, as they are low on many of these, sometimes Nystatin, to combat candida or other fungal infections, bicarbonate, which helps turn off a reaction. Some children are having gammaglobulin to help boost immune function. As well as the foods listed above, you should avoid foods which contain sulphur, ie. garlic, onion, cabbage, egg yolk, and foods which are preserved with sulphur. Avoid sodium metabisulphite (a preservative) and any foods which contain sulphites, as some children have a deficiency of sulphite oxidase, which makes sulphites safe in the body. Foods which are naturally highly coloured should be avoided, as it is the colour and the aroma which contain the phenolics, ie. oranges, tomatoes, red grapes, red apple skins, etc. We hope to continue with the research programme at Birmingham, but we have come the end of our funding, with no prospect of more at present. Work will continue, but will be much slower. If anyone wants to know more, please post a message, or e-mail me at: autism_aia@piers.demon.co.uk. Item number 15565, dated 95/02/27 11:19:32 -- ALL Date: Mon, 27 Feb 1995 11:19:32 EST From: Lisa S Lewis (LISAS@PUCC.BITNET) Subject: New Research Project Dr. Reed Warren, a Professor at Utah State University, has been studying the genetics of autism for several years. He has NIH funding for studying some additional families, and due to the recent research on the possible connection between gluten/casein and some cases of autism, he has become particularly interested in studying families with autism and gluten intolerance in the same family or individual. He has asked me to post this note to solicit new research subjects. Here are the steps to take if you want to learn more: STEP ONE There is no cost to participate, but only a limited number of families can be studied so there is an application process. Your immediate family must have at least one autistic person, and one gluten intolerant person (could be the same person) to participate. If there are more applicants than available slots, preference will be given to biopsy-confirmed Celiacs rather than generic gluten intolerance. Every family member will have blood drawn and shipped to Dr. Warren's lab for analysis. You will be provided with a complete HLA typing of each family member, and some general information about to what extent each HLA type you have is known to be associated with increased risk for Celiac, autism, juvenile diabetes, multiple sclerosis, lupus, myasthenia gravis, rheumatoid arthritis and other genetically influenced disorders. Although there is no absolute proof, some researchers believe that autism is the result of a genetic predisposition along with some type of triggering event. Some triggering events which have been discussed (but not absolutely proven) include gluten & casein in the diet, certain viral infections, excessive antibiotics giving rise to yeast overgrowth, certain immunizations, and other factors. For those of you who are thinking of having more children, or who have young children, the HLA information may be of value in attempting to avoid such a triggering event in genetically susceptible children. Since Dr. Warren is doing a research project rather than practicing medicine, he cannot give any individual advice, nor can he guarantee any particular value to the results of the study. Of course, those participating will also have the satisfaction of knowing that they have assisted in the advancement of knowledge on autism. Hopefully this will be of direct benefit to children all over the world. Also, HLA typing is rather expensive to do privately, and you will have this done for free. If you would like more information about Dr. Warren, including his curriculum vitae and an electronic copy of an article he has written about his research, email me privately at LISAS@PUCC.PRINCETON.EDU. (Please don't reply to the entire Autism list.) STEO TWO - Apply for Participation in the Research Once you have determined that you qualify and would like to participate, send an email to me privately at Lisas@pucc.princeton.edu. I will email you back a short application form which you would fill out and email directly to Dr. Warren. Please do not send me any private or confidential information about your family -- all such information will go directly to Dr. Warren and will be treated confidentially within established research criteria. If you know someone who is not on-line and would like to participate, please get an application form for them. They can send it in to Dr. Warren via 'snail-mail'. *************************************************************************** Dr. Warren is a well respected professional in the field, who has published over 100 articles on the subject of autism. Please feel free to write for a copy of his (extensive) CV. Item number 16172, dated 95/03/11 10:03:18 -- ALL Date: Sat, 11 Mar 1995 10:03:18 -0500 From: CFBT2MT@AOL.COM Subject: Re: UNCONTROLLABLE LAUGHING My son has been yeast free/ sugar free for almost a year, so we/the environment is not adding to a candida problem, and yet when traces of gluten get into his (now rigorously gluten free) diet, he also acts drunk. And with casein he becomes psychotic looking, not autistic, but absolutely hallucinating out of his mind. His younger NT brother immediately becomes constipated with the slightest trace of milk or cheese. So, maybe feeding yeast, processing sugar, processing peptides, or poopy seeds all make these kids drunk. What do all of those processes have in common? Candace Item number 16199, dated 95/03/12 00:55:52 -- ALL Date: Sun, 12 Mar 1995 00:55:52 +0000 Reply-To: "P.SHATTOCK" (hs0psh@orac.sund.ac.uk) Subject: Poppy Seeds. One further contribution to the poppy seed discussion. Poppy seeds are largely a bye-product of the opium industry and are the seeds of Papaver somniferum, the opium poppy. Opium actually contains about 30 different "alkaloids" with a variety of pharmacological activities but morphine and thebaine are the best known. The biosynthesis of morphine begins with the amino-acid "tyrosine" which then undergoes many reactions before appearing as "thebaine" which is converted to "codeine" which is converted to "morphine". Morphine is generally regarded as being at the end of the line but actually it isn't. Using radioactive tracers you can see the morphine is bound up with protein material in the seed. In this form it is unavailable to humans even when we eat the stuff but it is still there (lurking!). When the seed germinates and produces it's own morphine, guess what? radioactive morphine. Therefore the morphine has been released from the protein complex and is available for the plant to do whatever it does with it. (Nobody actually knows why it produces the stuff anyway.) To those of us addicted to the opioid excess theory of autism, the observations about poppy seeds are particularly interesting. It may be worth checking this out further. It may be, of course, that the poppy seeds are mere accompaniments to the gluten in the bread-buns but I imagine that those reporting problems will have thought of that. Paul Shattock. Item number 16842, dated 95/03/28 12:55:32 -- ALL Date: Tue, 28 Mar 1995 12:55:32 MST From: Jean Jasinski (jean@SWTTOOLS.FC.HP.COM) Subject: DDR Conference Notes These are my full notes from the Developmental Delay Registry Conference, After the Diagnosis. Understand that my notes are subject to my interpretation and all spelling errors are mine. (snip) On Allergies -Signs of allergies: spacey look on face, crease in nose from pushing up on the nose, wrinkles under eyes, eye circles (pink, black, blue), red ears, bags under eyes, red rosy cheeks, frothe at mouth, geographic tongue (bald patches), maniacal laughing (negative anger). Atypical signs of allergies include: headaches, ADHD, chronic infections, developmental problems, bowel and bladder problems, fatigue, and sleep disturbances. -If child behavior deteriorates before meals, it's likely hypoglycemia. If their behavior deteriorates after meals, it's likely allergies. Some food allergies may not show up immediately (like bed wetting, fecal soiling--circular mark in underwear, not a smudge). -Crohn's disease is a "piece of cake". The ingredients in cakes cause symptoms: wheat, flour, sugar, egg, etc. -Signs of allergic reactions in fetuses: kicked mother sore, excessive hiccups. -Signs in infants: fussiness, colic, ear infections -Signs in toddlers: tantrums, biting, vomit clear mucous, fecal soiling. -Alkalis (alkaseltzer, potassium carbonate, sodium bicarb) can prevent or improve food allergy symptoms if taken before an allergic food is consumed and taken after. Don't do this too frequently. For adults, 1/4 to 1/2 tsp 3X/day. -If a child has eczema, there is evidence of gut permeability in 100% of the cases. -Sugar slows down microphages and neutrophils (white cell immune system function). The effect can last for up to 5 hours. -If you crave it, you are likely allergic to it. -The foods to eliminate on an elimination diet are: anything you eat more than twice a week PLUS corn, soy, wheat, egg, baker's yeast, sugar, fructose, coffee, tea, alcohol, citrus (oranges, grapefruits, lemons, lines, NOT pineapple) molds, preservatives, and additives. There was some disagreement as to how long one should try the elimination diet before introducing the common foods again, one at a time. Some said 4 days and some said 10-14 days. Be sure you feel well before you introduce foods one at a time. Have a food at breakfast (on an empty stomach). If there is no reaction, have it again at lunch and dinner. If you react, you know you are allergic to that food. Take that food out of the diet again and feel well again before introducing a new foo d. If there is no reaction, you still want to eliminate the tested food again so that you are only testing one food at a time. Then test food additives: mix all the McCormick food dyes together or test one at a time. Test cheese separately from milk. Test orange, grapefruit, lemon, and lime one at a time. When testing chocolate, test with pure bakers chocolate that does not contain sugar or milk. To test fruits and vegetables, you should test first with organic produce and then supermarket produce because the chemicals sprayed on the produce may be the problem. -Many people try the elimination diet for 2-4 weeks. There are immunological reasons why the diet must be tried for longer. 70/81 kids with chronic ear infections improved after being on the elimination diet for 16 weeks. -New diseases like carpal tunnel syndrome, kidney stones, hyperactivity are appearing because of the chemicals on food that interfere with B6 metabolism. -Milk is a contributor to colic, chronic nasal congestion, asthma, nephrotic syndrome, type I diabetes, anemia, obesity. -There are psychoactive chemicals in wheat and dairy (exorphins) and nanogram quantities of valium and atavan (sp?) in potato and wheat. In alfafa, there is TRH (thyroid releasing hormone) which is absorbed intact. -To test for food allergies: provocation/neutralization testing, elimination/provocation (see more dramatic result after you've eliminated the food first), blood IgE is valuable for immediate reactions while IgG will show more delayed reactions. -No child under two should drink whole cows milk. After breast feeding, you should use soy (if no soy allergy), formulas, protein hydrzolates like Nutramagen. However none of the commerically available formulas include essential fatty acids like DHA, EPA, LNA, flax oil. These should be supplemented even in breast fed babies. -Yellow dye #5 is particularly bad for asthma. -The Feingold diet helps 10-15% of the children who try the diet. -Chronic ear infections due to food allergies can be treated relatively easily. Hyperactivity due to food allergies are more involved and unless you remove additives and preservatives and common foods. -Conventional skin allergy testing for foods is unreliable. -Signs that one needs more essential fatty acids (EFA): dry patches of skin, alligator skin on back, dry brittle hair, excessive thirst (exclusive of diabetes), hyperactive behavior. EFAs play a role in heart disease, arthritis, skin disorders, clotting disorders, and toxemia. You cannot cook with EFAs but you can mix them in nut butters, salads, etc. They should be taken with antioxidants (vit. E) and the oils must be refrigerated. The dosage would be one pearl per year of age up to age 6. You can also add Vit. E to flax oil to help preserve its shelf life. EFAs can be found in fish like salmon, mackeral, omega fish oil, and LNA can be found in pumpkin seeds and walnuts. Use walnut butter instead of peanutbutter. -Synthetic vitamin E is sometimes labelled as DL-alpha. It is better to use D-alpha vitamin E. The US has the lowest vitamin E levels in the developed countries. Our levels are approximately half of those in Japan. They have seen significant amounts of cell aging in deceased children that point to low Vitamin E. -The white cells kill germs by "bleaching" the germs. Need antioxidants to keep white cells working. The amino acid taurine protects good cells from the bleaching action. It also helps regulate electrical activity in the CNS so it's likely implicated in seizures. -Tests to consider: -Amino Acid Assay. If you canonly do one, do urine. -Organic Acid Analysis. You must be careful which lab you use to test these. Most childrens' hospitals that test for these acids allow generous ranges because they are testing for inborn errors of metabolism. For a list of labs that use the right protocol and testing ranges, see Dr. Schmidt's new book, _Tired of Being Tired_. This book can be ordered by calling 800-622-6309. -Plasma or red cell Fatty Acid Assessment -Trace Element Assessment. If you are only going to do ONE test, do this one. -Hair analysis for heavy metals. Your MD will likely laugh when you request this but the EPA uses hair analysis as a forensic screening test. If you test high, there will have to be a followup urinary challenge testing---kind of chelating test. Finding the source of heavy metals is important. -Mercury fillings. Dr. Schmidt recommends not putting them in children or pregnant women. That doesn't mean they should all be removed; there is a specific protocol for removing the fillings that includes nutritional supplementation. Metals play a strong role in the immune system. Amniotic fluid was analyzed for toxic metals in normal pregnancies. At the age of 3, the children whose amniotic fluid contained more toxic metals had more infections than those with low levels. These were not mothers who were known to be exposed or poisoned with toxic levels. (remainder of post, on other topics, deleted) Item number 17018, dated 95/04/03 10:08:23 -- ALL Date: Mon, 3 Apr 1995 10:08:23 -0400 From: James Eiss (Jameseiss@AOL.COM) Subject: Re: Gluten and Casein I no longer believe in cures, but I do believe in imporvements. I also believe that there are different causes for autistic behaviors. My son is very gluten intolerant and his behaviors deteriorate drastically when he gets it. I think each individual has to try what they feel they can if there is no harm in the program. We have had success wtih AIT, prism lenses, mainstreaming, diet and other therapies. Not a cure, mind you, but Dan, age 21, is getting a regular high school diploma and has his first competitive job doing data entry for a local store. He is working 10 hrs. a week and will go to full time this summer. Don't give up or condemn everything if it hasn't worked for you. Not everything we tried worked either, but if you have a success it is well worth it. Item number 17076, dated 95/04/05 05:44:09 -- ALL Date: Wed, 5 Apr 1995 05:44:09 GMT From: John and penny Wade (ANTY22D@PRODIGY.COM) Subject: Re: Gluten and Casein Why does everything have to be this or that; cure or no cure? If diets is part of the cause of autism, then why shouldn't it be part of the treatment. Not the only treatment, but part of it? If Lovaas works, then do it, but don't stop there. Also look further. You can do a casein free/gulten free diet. Have your child on the Super NuThera (b6/magnesim powder) and DMG and run a Lovaas Program all at the same time. As well as having your child in preschool, too. AND give your child bathes in epsom salt. I honestly don't believe that there is a miracle cure. You need to deal with whatever is bothering your child and teach them as well. Diets alone isn't going to do it. AIT isn't going teach your child the alphabet. And Lovaas isn't going to help your child's metabolism. Isn't everything connected in some way and all of these treatments are overlapping each other? Why does it seem that everyone is trying to disprove each other rather then seeing all that is there to offer and trying to see what works best for your child. I AM SO CONFUSED! Penny Item number 17102, dated 95/04/06 12:40:04 -- ALL Date: Thu, 6 Apr 1995 12:40:04 -0400 From: CBraffet@AOL.COM Subject: Gluten/casein-Andrew's story Occasionally I post on my son Andrew's progress on the gluten/casein free diet which now he has been on for over one year. I thought this might be a good time to do this again, in light of some list members pooh-poohing the idea that this could possibly be of any value. When I started my son on the diet we were at the bottom of a down hill behavioral slide with no where else to turn. Andrew had been excluded from school for aggressive, uncontrollable behavior and I was with him the majority of the day, 1:1, just to keep him from hurting himself too badly. He was at a point that he could maintain some semblence of composure only in the security of his own room. He was 14 years old, 185 pounds at 5'8", a big boy who sometimes would go over the top of whoever was standing in his way. He had wide, wild mood swings, would become panicked easily and was generally very difficult to handle. I had stopped taking him out except when absolutely necessary for fear that he would get the urge to leave the car while it was rolling down the street, not to mention having to frequently sprint after him in parking lots, stores, etc. The school was recommending a hospitilization in a children's psychiatric ward. He was on Mellaril and had been on Prozac prior to the Mellaril. He was miserable, and I was in agony over not being able to find a way for him to lead a life with even a marginal quality of existence. We were pretty low, all alone, with no help in sight. I read about the diet here, on the list. Jean Jasinski...bless her kind and caring heart...sent me copies of Reichelt's 1991 article out of _Brain Dysfunction_, as well as urinary peptide testing info. Lisa Lewis sent me her personal archive of the previous discussions in 1993 of the diet and some notes of encouragement. I read this stuff, decided that it was worth a try, and went all out. The first thing that happened was my poor boy, already distressed, went into a ferocious withdrawal. We were 1:1 in his room for about a week. He tore himself up, tore me up and it was horrid. I'd read that this happened about half the time with Reichelts subjects so I was not surprised (only very haggard) and was actually heartened by the knowledge that I had probably hit on SOMETHING, There had to be some reason for a withdrawal that fierce, so Reichelts excess opioid theory became even more rational to me. After about a week he started to calm, down, down, down, he came. He slowly but surely became calm, cool, collected and such good company. Within the space of two months he was more level, more attentive, more social than I had seen him ever before. During all of this I utilized the due process procedures to put together an educational program that would benefit my boy. I developed a job for him, hired a job coach, and then had the hearing officer order the school to follow my program for him. (It was working after all) I picked a greatteacher and a supportive school to move him to. Yesterday we had his summer IEP meeting. Everything is going along so well. This has been by far the best year ever for Andrew and his progress astounds even me. He has learned to swim laps in the pool, has started a new job recently (wrapping silverware at a local nursing home), can go anywhere in the community safely with an adult, patiently pushes the shopping cart for me in the store stopping when I ask, seeks out the company of both me and his sisters at home...in short, he's doing marvelous. He definitely is not CURED. He still has autism. He has tactile defensiveness (much less severe now), he remains functionally non-verbal (dramatic increase in appropriate non-verbal communication skills though), still gets anxious when routines are disturbed (although he is much less dependent on routine now), and he has a processing delay. The quality of his life has increased dramatically with the removal of the stress that the gluten/casein was putting on him though. He appears happy,even playful at times, he no longer aggresses towards others, he no longer tears his fingernails off or even picks at his fingers, he no longer has nocturnal feces smearing, he is no longer incontinent of urine during the day (a periodic problem before), and he no longer eats compulsively. He also has no need for any medications of any sort. The only thing he takes are gluten/casein free calcium/magnesium supplements, a B-6 supplement and a multivitamin. He is growing. He has lost 45 pounds. He is a tall, lean 140 lb, handsome young man. The quality of life for the whole family has taken a dramatic turn for the better. I was able to leave him with a respite provider for 11 whole days last month to go to Hawaii to get married. I was able to return to work last fall to pursue my career as an advocate for community supports for people with disabilities. My daughters can bring friends over and they're not terrified of what their brother may do. Most importantly, Andrew feels better than ever before. I finally found a way to help him. Our challenge now is different. Andrew is now 'available' to learn for now he can sit and attend. He doesn't know how though, he's never been able to before, so we are truly at the beginning. We've brought in some specialists on autism who are doing some extensive school observations and hopefully we can build some sort of learning protocol for Andrew. He's got so much potential now! Its a far cry from the looming spectre of the in-patient unit full of lost souls doing the Haldol-shuffle! This is Andrew's story. I realize that only a portion of children with autism will probably benefit from this diet for it would have to be part of their particular problem. Autism is so diverse in its etiology. My deepest regret is that I didn't find out ten years earlier and halted the inexorable damage done as opiates wreaked havoc in my beautiful son's brain. So I urge all of you to at least investigate this as a possibility for your own children. Chris Braffet Delnat, CBraffet@aol.com Item number 17211, dated 95/04/05 19:17:22 -- ALL Date: Wed, 5 Apr 1995 19:17:22 GMT From: "Lisa S. Lewis" (lisas@PUCC.PRINCETON.EDU) Organization: Princeton University Subject: Re: Gluten and Casein Ray Castagnaro (rcastagn@nando.net) wrote: )) At last a panacea for Autism! Join the ranks of Lovaas and Bears & ) Suzi Kaufman, Mr. Wiss. Those of us who have been dealing with the ) cure-alls and miracle-makers for fifteen years or more can only be ) amused at first, then saddened by so simple an attempt at THE CURE ) for, perhaps, the most pervasive disorder in the world. ) If it were as simple as eliminating certain foods from our childrens' ) diets, do you think organizations, Newsgroups, research, etc. would ) still be necessary. ) Or, was this a slightly delayed April Fool's joke? ) Ray Castagnaro Ray, Many people have seen marked improvement in their children's behavior when they have changed the diet. There is a great deal of evidence that many autistic children are also gluten intolerant. No one is claiming this will "cure" autism. But many kids have been helped by this non-invasive, SAFE intervention. It amazes me that a parent would take this attitude without doing a little bit of background reading. If you want to chalk this up to quackery without trying it, fine. But don't discourage others. Lisa Lewis Item number 18021, dated 95/05/07 12:53:28 -- ALL Date: Sun, 7 May 1995 12:53:28 GMT From: Don Wiss (donwiss@panix.com) Subject: Diet and mental disease Forwarded message follows: Date: 11/21/94 8:29 AM Subject: Diet and mental disease From: Kalle Reichelt, (K.L.Reichelt@rh.uio.no) Due to epidemiology Prof Dohan, Philadelphia proposed that there was a clearcut connection of gluten to schizophrenia (Dohan et al (1984) Biol Psychiat 19:385-399; Dohan (1983) Biol psychiat 18:561-564). See also Lorenz K (1990) Adv in Cereal Sci and Technol X:435-469. The effect of diet takes a long time because the kidneys are very well adapted to preserve peptides and proteins. We found that it took 28 weeks of strict diet to normalize the urinary excretion of peptides in a double blind study of diet followed with urine analysis and rating scales (Reichelt et al (1990) J Orthomol Med 5:223-239). Most experiments on diet have been far too short in time, but even then all admit to individuals being much improved on diet although not statistically for the g roup (Rice JR et al (1978) Amer J psychiat 135:1417-1148; Storms LH et al (1982) Arch Gen Psychiat 39:323-327;NB: Vlissides DN et al (1986) Brit J Psychiat 148:441-452) The low number partaking in the experiments have been citizised (King DS (1985)Biol Psychiat 20 :785-787.). Clearcut effect of diet in schizophrenia was found by a) Dohan and Grasberger (1973) Am J Psychiat 130:685-686: Singh and Kay (1976) Science 191: 401-402; Cade R et al (1990) Psychiatry :A world perspective 3: 494-500 (he uses our urine screening too). In autistic children we have very good results as documented with STRICT diet (Knivsberg SA-M et al (1990) Brain Dysfunct 3: 315-327 and also Reichelt Klet al (1991) Brain Dysfunct 4:308-319).In the last publication evidence for the identification of bovine casomorphin 1-8 immunoreactive peptides was reported, and opioids are formed from food proteins in the gut .Also extremely important is the fact that everybody takes up bioactive peptides and also trace amounts of protein from the gut (Gardner MLG (1994) in Physiology of the gastrointestinal tract (Johnson LR : edit) Rave Press, NY pp 1795-1820) ,That this is so can be seen from the fact that we all have IgG antgibodies to food proteins .Because there are 15 opioid sequences in one molecule of gluten (Fuk udome and Yoshokawa (1991) Febs lett 296:107-111) even trace amount so protein uptake can be catastsrophic if not properly broken down. In general we also find increased IgA antibody levels in schizophrenics (reichelt et al in press) and usually peptide increased in the urine. The problem is usually that diet is tried as a last resort , and because there are strong indications that opioids inhibit the normal maturation of the CNS (Zagon and Mclaughlin (1987)Brain Res 412:66-72) it is no wonder that we often are too late or that it takes time to change the course of the disease. NMR studies are quite clear that trophic changes do take place . The opioids do get in the CNS as in Post partum psychosis ,which is a dramatic and symptom rich psychosis (Lindstr|m et al 1984)Amer j psychiat 141:1059-1066) Diet is however, not easy and may be experiences as a socially isolating procedure. It must also be strict. Finally the opioids make it difficult to quit the food in question as in all addictive states. More details can be obtained by writing me directly Cheers TINY K. Reichelt Pediatric Research Institute N-0027 Oslo, Norway Tel: +47 22 86 90 45 Fax: +47 22 86 91 17 E-mail: K.L.Reichelt@rh.uio.no Item number 18027, dated 95/05/07 18:27:54 -- ALL Date: Sun, 7 May 1995 18:27:54 GMT From: Don Wiss (donwiss@panix.com) Subject: Reichelt on gluten, autism and schizophrenia Forwarded message follows: Kalle Reichelt has just returned from an extended trip and in reviewing the earlier posts to this conference on proteins, peptides, gut permeability, autism and schizophrenia, has the following comments to offer: Date: 12/27/94 9:39 AM Subject: Gluten, autism and schizophrenia From: Kalle Reichelt,K.L.Reichelt@rh.uio.no,Internet A: Experiments double blind with gluten and schizophrenia: Most have been on far too small series and for very short time. We found in a double blind study that the peptide patterns took at least 28 weeks to normalize Reichelt et al (1990) J Orthomolec. med 5:223-239.) Also two positive studies have been reported 1) Singh MM and Kay SR (1976) Science 191:401-402.2) Dohan FC and Grasberger JC (1973) Amer J Psychiat 130:685-686. Several negative statistically evaluated reports (on small series) generally however, describe individuals that respond favourably. They were for short periods of time though and on chronic or semichronic patients .In these patients we know that there are morphological changes in the CNS. The references are: Potkin SG et al (1981) Am J Psychiat 138:1208-1211. Storms LH et al (1982) Arch gen Psychiat 9:323-327.Vlissides DN et al (1986)Brit J psychiat 148:441-452.Rice JR et al (1978) Am J Psychiat 135:1147-1148. All of thes have been citicized for lack of statistical power (King DS (1985) Biol Psychiat 20:785-787.) Double blind on autistic children is very hard to do. Howver,we have run the urines blind and applied the strategy of two independent persons to carry out functional tests and evaluation . The results cannot possibly be placebo because they last for 4 years and those that quit diet show REGRESSION. In spite of ordaining longer time to complete the tests the children off diet could not complete tests easily finished when on diet. References: Knivsberg A-M et al (1990) Brain Dysfunction 3:315-327. Reichelt KL et al (1990)J Appl Nutrition 42: 1-11. Reichelt KL et al (1994) Dev Brain Dysfunct.7:71-85. Epidemiology : I would like to draw your attention to two papers that are extremely well done: Lorenz K and Lee VA (1977) The nutritional and physiological impact of cereal products in human nutrition . CRC Critical Reviews in Food Sci and Nutrition 9: 383 -457. Lorenz K (1990) Cereals and Schizophrenia .Adv in Cereal Sci and Technol X: 435-469. Gut permeability : Because peptides ( Gardner MLG(83) Biochem Soc Trans 11:810-812.and this year a review, and also intact proteins are taken up in normal persons (eg Husby S et al (1985) Scand J Immunol 22:83-92); there is no need for increased uptake. All we need is decreased breakdown ,something which regularly causes peptiduria and peptidaemia (Wright EC et al (1979)J Inherit metab Disease 2: 1-3; BlauN et al (1980) J Inherit metab Dis 11 (suppl 2) 240-242.; Lunde H et al (1982) J neurochem 38:238-246; Abassi Z et al (1992) metabolism 41:683-685; Watanabe Y et al (1993) Res Comm. Chem Pathol Pharmacol 81:323-350.) Because peptides generally are good peptidase inhibitors ( La Bella FL et al (1985) Peptides 6:645-660) it is easy to see that vicious circles can get going. This process may even start before birth because intact antigens have been found in mothers milk too (Axelsson I et al (1986)Acta Paed Scand 75:702-707; Troncone R et al (1987) Acta paed Scand 76:453-456; Kilshaw and Cant 81984) Int Arch Allergy Appl Immunol 75:8-15 and Stuart CA et al (1984) Clin Allergy 14:533-535). Finally I would like to draw your attention to the fact that the coeliac inducing peptide isolated from gliadin (Wieser H et al (1984) Z Lebensmittel Unters Forsch 179:371-376 contains the gliadinomorphin sequence Y-P-Q-P-Q-P-F. Also the gluten molecule contains up to 15 opioid sequnces brilliantly elucidated by Prof DR Yoshikawa (Fukudome SI and Yoshikawa M (1991) FEBS Letters 296:107-111)and such opioids are formed in the gut. Some references on gut leakage and schizophrenia will be forwarded later . However, Dr Sci MLG Gardner, School of Biomediacl Sci .Univ of Bradford, Bradford BD 7 1DP, United Kingdom is extremely knowledgeable on this matter. Seasonal greeting to all. Cheers Tiny. K. Reichelt Pediatric Research Institute N-0027 Oslo, Norway Tel: +47 22 86 90 45 Fax: +47 22 86 91 17 E-mail: K.L.Reichelt@rh.uio.no Item number 18495, dated 95/05/19 16:12:50 -- ALL Date: Fri, 19 May 1995 16:12:50 EDT From: Brenda Haglich (bhaglich@EUSTIS-AATDS1.ARMY.MIL) Subject: Re: Children who speak after Karen Reznek (karen.reznek@IDEALINK.WASHINGTON.DC.US) Wrote: | | )Does anyone have a child that is 6 or older that has | language now but that | )did not develop language until he/she was 4-5. ....(snip) My son Nick is 7 1/2 he was basically non-verbal at age 4 (20 words) he is now very verbal (just tested to be at 65 month level) and does a reasonably good job communicating needs and feelings (yes, I really meant to type feelings) Several things contributed to Nick's progress. I'll try to list them all, they are not in any particular order. - he has a precocious brother Alex who is 4 1/2. Alex talks non-stop at a level much higher than his years. His constant interaction has helped Nick immeasurably. - Nick has Auditory Integration Training at age 5. During that year between 5 and 6 Nick's verbal skills jumped from 18 months to 45 months - Nick has had speec therapy 1-2hours per week since age 4 - Nick had sensory integration therapy between ages 5-6 - Nick had several undiagnosed food allergies, among them were wheat and dairy products (basically everything he normally ate was harmful to him) He's been on a wheat and dairy free diet since October and I can see a noticable difference in his verbal skills. - Nick takes many vitamin supplements NOT mega doses, and only for those areas in which his physician found him to be deficienct. (Calcium, Iron, Magnesium, b Vitamins, Vitamins A E C and zinc - Nick has been in a nonhandicapped daycare setting for the past two years, the children have been wonderful to him and have really helped his social skills. He has also beem mainstreamed since kidnergarden. I think this has really helped. Brenda Item number 18609, dated 95/05/22 09:05:21 -- ALL Date: Mon, 22 May 1995 09:05:21 EDT From: Brenda Haglich (bhaglich@EUSTIS-AATDS1.ARMY.MIL) Subject: Re: PDD Questions Margaret Mayman (mam103@COLUMBIA.EDU) Wrote: ))Brenda Haglich (bhaglich@EUSTIS-AATDS1.ARMY.MIL) wrote: ))All I can tell you is that I couldn't see anything harmful with ))the treatments so I tried treating my son for ))candida and he improved dramatically. He's gone from ))an average of an ear infection a month from age 9 months ))to 7 years to one ear infection in the past 4 months. Not bad, ))huh? I'd be happy to chat some more if you're curious. Brenda, What was the treatment that you gave your son for the yeast problem? Were there any changes other than the reduction in ear infections? Behavioral or language changes? Regards, Margaret | Margaret Mayman | New York City | (mam103@columbia.edu) Margaret, Nicholas's doctor prescribed Nystatin, an antifungal medication to be taken 4X per day for about 2-3 weeks. In addition, we used some natural antifungal agents (garlic, alfalfa, acidophilus, a detoxifing/laxative (that was a moving experience!---sorry couldn't resist)). His doctor also suggested we modify his diet to remove anything that would promote yeast growth (sugars) and potential allergens (wheat, dairy, corn, citrus) She took blood work at that time to check all sorts of stuff. When we returned three weeks later Nick was much improved, his tounge didn't have that whitish look, the dark circles under his eyes had cleared, and the yeasty bumps on his backside had disappeared. Nick was much calmer and more focused. Using his bloodwork, his doctor prescribed supplements to help correct his nutritional deficiencies, iron with Vit. C for anemia, B complex, and a multitab of Vit A, E, C, and zinc. She also suggested that we add in one at a time all of the potential allergens. Nick had problems with everything but corn. It is amazing, when he gets any sort of a milk product, he gets and ear infection within three days. We treat them a bit differently now. If we catch it early, we treat it first with the prescription drug anamine (decongestant/antihistamine--no added sugar or dyes) and the natural antibiotic echinacea. We only use broad spectrum if it is more advanced (you really need a peditrician you can trust here). When we do use antibiotics, Nick takes Nystatin 4X a day while he is on the antibiotics. He still is on a restrictive diet which means I need to send his food with him almost everywhere he goes, but that is a small price to pay. He behavior and communication skills have improved so greatly that after the initial 3 weeks, I have had no problem getting the school and the daycare to cooperate. As far as trying to quantify the changes, Nick's language has improved greatly. He now is beginning to understand contractions, wh- questions, and pronouns! Behavior wise--he can actually sit in one place for more than 30 seconds--even people who know us casually have commented on how much his behavior has improve (people at church--yes nick can actually sit through a whole service!), people we play baseball with, doctors who see us 1-2 times a year..... Anyway, sorry for being so long winded, but I hope this gives you a little picture of what I've seen. If you want more information, recipies, my doctor's name if your doctor want to consult with her, more information on what we've done for supplmentation and why just drop me a note. Brenda Item number 18835, dated 95/05/26 08:38:44 -- ALL Date: Fri, 26 May 1995 08:38:44 EDT From: Brenda Haglich (bhaglich@EUSTIS-AATDS1.ARMY.MIL) Subject: Re: Starches x011@LEHIGH.EDU Wrote: ))4) What dietary connections are there in the treatment. My ))son has a highly restricted range of foods he will eat and ))it largely centers on starches such as french fries, rice and ))any form of pasta. I am concerned that if these are removed ))from his diet he will be in serious trouble as he has proved ))that he will starve himself if denied his usual diet. ))David Dixon )Very interesting. Kalat (1995) reported high brain metabolism )and cocaine like effects associated with autism. Drug addicts )treat themselves with starches to overcome the withdrawal )symptoms. )Ron Blue x011@lehigh.edu David, My son had a very similar diet (cheerios, french fries, shell pasta, pizza, hot dogs, and chicken nuggets) I have managed to get him on a wheat, dairy, corn and citrus free diet. It was definitely not fun in the beginning. Nick didn't eat for the first four days. All he would touch was the fruit juice. I was just about to give up, when he finally ate a small piece of grilled chicken and a few chunks of pineapple. Slowly he began to eat other things. I realize this might not work for everyone. I had tried a similar approach two years earlier and gave up after four days because I was afraid Nick would indeed starve himself. With hindsight as my guide, I believe that the first time, Nick didn't recognize some of the other objects as food. The se cond time I made a special effort to make the new food resemble things he was used to--cashew butter looks like peanut butter, I cut the grilled chicken into chicken-nugget shaped pieces and made sure it was lightly browned, i sliced the carrots like french fries and put them in a MacDonald's box. Idon't know if it was this that did the trick or if Nick was just ready. Good luck, Brenda Item number 18916, dated 95/05/28 00:36:59 -- ALL Date: Sun, 28 May 1995 00:36:59 -0400 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: NEW TO LIST Mother of (almost) 4 yr. old son w/ autism. New to list. Doing Lovaas and Gluten - free, Dairy - free diet. JJChopson, Indiana Mom Item number 19573, dated 95/06/09 22:23:44 -- ALL Date: Fri, 9 Jun 1995 22:23:44 -0400 From: JJChopson Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: Limited food repertoire My son was exclusive w. cheese, mac n chees, cottage cheese, grilled cheese, dry cereal and crackers. The descion to try a gluten/dairy free diet was a hard one because that was all he ate! However, I heard some info on the diet and read in Doris Rapp's book IS THIS YOUR CHILD that children usually crave the very foods they are allergic to. He is now doing well on the diet and we have found replacements such as tapioca and rice flour bread and crackers, Fruity Pebbles and Corn Pops are gluten free, soymage soy cheese, Rice dream milk sub. and ice cream, etc. His behavioe is much better and he no longer CRAVES the food he did in the past. And just in case I forgot why he was on the diet, he reminded me w/ two explosive behavior outbursts in the last 5 days, one from eating spaghetti and one from eating cookies (both have gluten). Maybe a childs food repertoire will increase when the allergy is relieved. My son usually ate (and eats) a decent variety of foods, but he definetly preferred the afore mentioned foods. Good Luck Item number 19731, dated 95/06/14 20:45:03 -- ALL Date: Wed, 14 Jun 1995 20:45:03 GMT From: Simon Patience (sp@ALBION.ENGR.SGI.COM) Subject: Re: aspergers (snip) On a slightly different topic, we have been playing with my sons diet recently having read about the effects of gluten and casin on some autistics. We _think_ we have seen an improvement of behavior, especially relating to reduced isolatary behavior and improved communication, but it is early days yet. Effectively we have cut out wheat, oats, barley and milk products. The main reason that we think we see an improvement is because when he eats any of the foods we have eliminated (eg at school or by accident) we notice a deterioration over what we have now come to expect from him. Yesterday was a case in point, after eating a sandwich made from normal bread at lunchtime, he was hyperactive all afternoon and evening and we were back to having to touch him in order to get him to focus on us. This morning he was fine again. I would be interested to hear of other peoples experiences with Aspergers and diet. Simon. -- Simon Patience Phone: (415) 390-4644 Silicon Graphics, Inc FAX: (415) 390-3542 2011 N. Shoreline Boulevard Email: sp@sgi.com Mountain View, CA 94043 Item number 20270, dated 95/06/24 18:19:45 -- ALL Date: Sat, 24 Jun 1995 18:19:45 -0400 From: Candace Timpson (CFBT2MT@AOL.COM) Subject: Re: oppositional defiant diso... Susan, please take all the info from anyone. But I think I started this little science test. In January I had the luck of attending a brain storming seesion (Rimland's Defeat Autism Now conf.). At that meeting was a British researcher, Rosemary Waring who was working in the field of alzheimers (originally), autism and migraine. She has found a fundamental enzyme shortage in all thre e of these populations, it is PST, phenol sulfer transferase. This enzyme has two functions, it ensures that your mucous membranes are ciaoted with a slimy surface to protect them and make them resilient (membranes of the gut, nose, ears etc.) It also helps to hydrolate (surround toxins with extra water molecules) toxins out of your body. If you don't have this, your body builds up with toxins, and also places like your gut can become permeable to undigested peptides from say gluten (wheat, oats, barley and rye) and casein( All milk products) these peptides then travelto the brain looking like pseudo neurotransmitters. Not good. So at the meeting I asked Rosemary how do I get PST in my kid assuming he's got a shortage. She said magnesium sulfate. Next day I go to the health food store and ask for same, they say no, sulfers to hard to digest. I ask my envirmonmental/allergist/ space age doctor, he says mag sulf is epsom salts. So I tried it, the next day all my sons oppositional behavior went AWAY. AWAY I tell you, gone. So, we've been on it every night for about 6 months, and his languag has gotten better, his mood, his cooperativeness, etc. Try it and tell us what happens. An adult with autism has tried it, she says she's never slept better but that it made her irritable. So far about 65 people have responded to my informal survey, she and one other child became irritble, one child had no change after one day. All the rest found dramatic improvement in behavior, language, even bike riding. Candace Item number 20549, dated 95/06/30 12:05:11 -- ALL Date: Fri, 30 Jun 1995 12:05:11 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Conference on Autism Most fellow list-members take a real interest in research and, in particular, that concerned with the biological bases of autism (and associated disorders). I hope that the following will not be construed as "advertising" but I thought you might be interested in the details of a forthcoming conference to be held in Troina, Sicily this October 5th-6th. The basis idea is to look at autism from a variety of standpoints to try to determine some sort of natural classification based upon genetic, biochemical and electrophysiological parameters (rather than purely clinical and psychological tests (IQs etc). It may be that we can determine sub-groups within the "autism spectrum" and therefore some of the underlying explanations. This may provide a basis for a more rational approach to helping individual people with autism. Thursday October 5th (morning) P.Shattock (Sunderland) - Autism as a metabolic disorder. K.Reichelt (Oslo) - Peptides as mediators in autism: A four year follow-up of dietary intervention. B.Marchetti (Catania) Opioid peptides as chemical messengers in endocrine-immune communications in autism: experimental studies and clinical observations. R.Waring (Birmingham) Biochemical parameters in autistic subgroups. R.Warren (Utah) Ia an auto-immune mechanism involved in the development of some cases of autism? L.Pavone (Catania) Autism and coeliac disease. Thursday October 5th (afternoon) H.van Engeland (Utrecht) Neurophysiological aspects of autism: in search of a biological marker. T.Martineau (Tours) Imitation and EEG mapping. R.Ferri (Troina) Topographic mapping of somatosensory evoked potentials in autistic subjects. M.Elia (Troina) Clinical correlates of brain morphometric features of autistic subjects. M.Mazzocco (Denver) Autistic behaviours in children with Fragile X. Friday 6th October (morning) E.Schopler (Chapel Hill) Enduring treatment concepts versus specific therapy concepts. A.Lincoln (San Diego) Intellectual profiles in high functioning individuals with autism. P.Visconti (Rome) Different evaluation instruments to verify the effectiveness of a cognitive behavioural treatment in autism. I.Cohen (Staten Island) An artificial neural network analogue of learning in autism. R.van der Gaag (De Bilt) Exploring the borderlands of autism: empirical views. P.Giovanadi Rossi (Bologna) Rare diseases associated to autism. Friday 6th October (afternoon) M.Coleman (Lake Forest) Classifying the sub-groups of autism: lessons from molecular biology. E.Schopler (Chapel Hill) Subgroups vary with selection purpose. C.Barthelemy (Tours) Classification of autistic syndromes and the Behavioural Functional Assessment. D.Sauvage (Tours) Classification of autistic syndromes and the Quantified Multidimensional Assessment. So, if you fancy an Autumn break in an incredibly interesting part of the world; this could be just the excuse you need. (I could add that it is pretty heavily subsidised and that the food is excellent but I wont as that would be advertising) Paul Shattock Item number 20622, dated 95/07/01 11:02:35 -- ALL Date: Sat, 1 Jul 1995 11:02:35 -0400 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: tantrum avoidance I too, am concerned about ignoring any and all "tantrum's". I ALWAYS try to figure out what cause a tantrum in my son. With his diet (gluten/casein) it could be an uncontrollable response to an offending food, so I check his "food log" to see what he ate. It could also be frustration over an uncooperative toy (those trains can be tricky!). In this instance I calmly ask him to repeat the word help "help" or if he's too upset I help him to sign "help" and then I help him. He rarely tantrums over frustration with somehting he needs help with and will now repeat the word or sign w/verbal prompt. He has even come to me and said "mom mom. Help" on two occasions. If I had simply "ignored" him he would have escalated and eventually given up trying to communicate. I can usually tell the difference between a "I need something and you better figure out what it is quick" tantrum or an "I really don't want to do this and you just try and make me" tantrum. The latter will have brief periods of silence in which he looks out of the corner of his eye's at me to see if he's getting to me! JJChopson Item number 21816, dated 95/07/23 21:45:13 -- ALL Date: Sun, 23 Jul 1995 21:45:13 -0400 From: Lss255 (lss255@AOL.COM) Subject: Candida/allergy triggering autism My son Jonathan has many of the allergic-type symptoms described in the book "Is This Your Child?" We took him to a doctor who supposedly specialized in this sort of treatment and diagnosis, who put him on the wheat-free/allergen-free diet, which did absolutely nothing, other than distress him. I still am concerned that we're missing something here, since he often smells odd and other factors. Does anyone know of a doctor in the New York City area that we could consult? Does anyone have any other ideas? Thanks. Lilian Stern Item number 22264, dated 95/07/31 00:35:02 -- ALL Date: Mon, 31 Jul 1995 00:35:02 +0100 Reply-To: "P.SHATTOCK" (hs0psh@orac.sund.ac.uk) Subject: "Stimming" Once again, I am sticking my oar into a discussion. Sorry about that but I have an alternative explanation for what is called "stimming" (self stimulatory behaviour) on this list. The use of these words to describe these behaviours make the assumption that they are done to stimulate the perpetrator in some way. I am not convinced that the person who bites their nails or drums their fingers or clicks their ball point pens when under stress is really getting much of a kick out of it. As has been pointed out already we all perform these acts all the time but they become more apparent (and new ones appear) when we are stressed. Stress of all sorts produces biochemical changes in our body. One of the main responses is to break down a large peptide molecule called pro-opio melano-cortin (POMC) into various smaller fragments. One of these fragments ends up as Adrenocorticotrophic hormone (ACTH) which results in the production of cortisone which severely depresses the immune system. Thus our imune system is severely depressed at times of stress. Our first year students often catch glandular fever because being taught by me IS stressful not because it is the first time they have encountered the organism(s). The other half of the POMC molecule ends up as beta-endorphin which features regularly on this list. This compound has many of the effects of opioid compounds plus a few of its own. Certainly it reduces perception of pain and probably other sensory inputs as well. One of its many effects is to cause characteristic behaviours which vary between species and individuals. Apomorphine is the classic compound for producing stereotypic behaviours. If you want a rat to behave stereotypically you inject it with apomorphine. Depending upon the strain of rat it will climb; try to bury itself; bite things; or move round the primeter of its cage repeatedly (muritactic response). If you are a believer in the opioid excess theory of autism, that people with autism have too high a level of these compounds, then the characteristic behaviours will be explicable. They would be expected to be evident even without the stressful stimulus. As I understand it from people with autism with whom I have been able to discuss the reasons for some of their movements, it is an irresistable urge to do the particular action. I sincerely hope that this reduction of real human beings to the level of chemically controlled robots is not insulting but it affects all of us. What puts us above the level of robots (and rodents) is that we can do something about the situation. 1. Reduce Stress. The stressful stimulus will vary with the individual. For some it is sounds of a certain frequency; for some it could be certain foods; for everyone, restraint whether physical holding or being kept in a building for long periods is very stressful. I have an intense dislike of holding therapy but appreciate the reasons why people give it a go. BRI therapy must be sheer hell. 2. Try to avoid making a big issue of the problem. It can become an obsession. When you are not supposed to smoke you would murder for a cigarette. When you have a loose tooth you should not touch, the urge to waggle it is irresistable.With some of the people in our units we make a deal with them. If David will concentrate for half an hour we will let him twiddle with his string for 15 minutes. Steve makes a sort of barking noise which gets on the nerves of other students. At 4.00 pm he can go in the garden and bark away as much as he wants. It isn't always successful but it is sometimes helpful. 3. If the anti-opioid drug naltrexone is given at the correct, individually titrated dose, which is usually very low, it seems to reduce such behaviours for some people. 4. I note that parents experimenting with gluten and casein free diets have (not invariably) noted improvements in this area. One last point, before I finally send myself to sleep, some medications make people act in particular ways. The neuroleptic medications (Melleril, Haldol etc could well exacerbate the situation.) That may all be rubbish but I hope it makes sense. Paul Shattock Item number 22345, dated 95/08/01 00:57:49 -- ALL Date: Tue, 1 Aug 1995 00:57:49 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Re: Autoimmunity and diet Dear all, Just thought I'd post an update on some investigating I've been doing. After reading about all this gluten-free dieting, and casein-free dieting, I thought I'd poke around in the celiac faq on the internet. Again, I was shocked by what I found. There I found mentioned more associations with diseases found in my immediate family, namely recurrent mouth ulcers, B12 deficiency, chronic diarrhea, Meniere's disease and lupus. I've been experimenting with my own diet, and have found no particular sensitivity to milk, although I remember as a child that it would give me headaches, but a definite sensitivity to wheat...my head buzzes and ears ring. I'd like to know more about how dietary changes effected symptoms/behavior in those who decided to make permanent dietary changes. How closely does this PST business resemble celiac disease? Does it do any good to just modify the amounts of these offending foods? Not looking forward to doing without wheat, Susan Owens Item number 22353, dated 95/08/01 07:34:20 -- ALL Date: Tue, 1 Aug 1995 07:34:20 -0400 From: Candace Timpson (CFBT2MT@AOL.COM) Subject: Re: Autoimmunity and diet If you're on the celiac list, read the recently posted post of Don Wiss who has gathered all the writings of Karl Reichelt. He is one of the researchers working on the gluten and casein thing. The sentitivity is somewhat similar in the sense that some get feelings like yours and or diarrea or constipation, but dissimilar in that frequently a celiac biopsy will come out negative. the point however, is that you can't just cut down on these offenders, you have to cut them out to get any benefit, also it can take up to one o two years to clean the brain of the peptides caused by gluten and casein. So you have to become really paranoid about the child's food. This is what happens, per Rosemary Waring (the PST guru) and Karl Reichelt (one of the casein'gluten g urus) forgive the liberal arts vernacular: the gut is compromised because of a lack of PST, the gluten/casein foods go into the gut, are not diagested, and the peptides go straight to the blod stream because of the permeable gut. They then travel to the brain as pseudoneurotransmitters and coat the brain receptors with opiod looking substances, causing the child to look autistic. It appears that each person will react differently, and some are more sensitive to one offender than the other, for example, my son can tolerate minute amounts of gluten (tho by ltting him consume it I am enabling his receptors to get coated with gloop) but if he has anything with milk in it he looks psychoic, not autistic, he looks like a raving maniac. With gluten he just becomes very irritable and snappish. But many kids seem to have a fungal involvement too, so yo've got to clean up the whole input chain, remember gargae in garbage out. It's hard but it's worth it. Candace Item number 23081, dated 95/08/11 20:58:07 -- ALL Date: Fri, 11 Aug 1995 20:58:07 -0500 From: "Stacye D. Manlove" (smanlove@MAIL.ORION.ORG) Subject: Re: Casein & Glutten Sensitivity Test This may really sound stupid, but we put our 3 YO on the gluten and casein-free diet without the bloodwork. There is a history of celiac sprue, MS in our family so we just tried the diet after an initial multiple-food-elimination diet. We have seen tremendous progress with regard to behavior, alertness, speech and eye contact. Any suggestions on other diets, vitamins, aminos, etc. we might try?Stacye Item number 23077, dated 95/08/11 21:05:20 -- ALL Date: Fri, 11 Aug 1995 21:05:20 -0400 From: d J caso (debrajoe@JAXNET.COM) Subject: Casein & Glutten Sensitivity Test Hi to all our listmates, If anyone has used Dr. Cade's lab at U of F in Gainesville FL for the urine and blood test for gluten & casein sensitivity the folks there would like a 2nd, 3rd ... urine sample (not another blood draw) every 3 months or so if you have begun to eliminate glutten and casein from the diet. It seems folks get an initial evaluation and then don't follow-up, so there is no record of how the diet is working. We recently did a 2nd urine sample for Joey and while he still has an abnormally high score, but since he has been on the diet, there have been positive changes in the graft. So, if you have used them once and gone on the diet, please use them again. Joe P.S. I'm not a shill. I get nothing for this post. Don't use a big work where a diminutive one will suffice. :) Item number 23088, dated 95/08/11 21:21:12 -- ALL Date: Fri, 11 Aug 1995 21:21:12 -0700 From: Sheldon Krasner (Chopliver@EWORLD.COM) Subject: Re: Casein & Glutten Sensitivity Test I'm new to the discussion group and saw your post regarding the Gluten-casein free diet. I am considering starting this with my 2 1/2 year old son - but I have to admit, I am really intimidated by the whole thing. His entire diet consists of bread. (Pizza, pb&J and grilled cheese sandwiches... you get the picture). He is very picky and doesn't eat a lot of things we offer. Any tips for a beginner? Nancey P.S. This is my first post. I hope I haven't violated any rules! Item number 23181, dated 95/08/13 09:12:05 -- ALL Date: Sun, 13 Aug 1995 09:12:05 -0400 From: SJGLASER@AOL.COM Subject: Re: Gluten/Casein Free My NDA son is very picky and eats like your son--all he likes are carbos and fruits..hates vegetables and meat, except hamburger. Both he and my autistic daughter have had yeast problems. I bought the book "Yeast Connection cookbook and it has some wonderful recipes--my son adores nut/banana/sweet potato pancakes and potato cakes, which have neither yeast nor gluten in them!!! Even thought it's an anti-yeast book, the recipes for whole foods are great!! I've also been sneaking in vegetables by making puree and adding it to hamburger meat (beef, turkey, pork), noodles (rice or corn) and mashed potatoes (ie, cauliflower, squash, etc) and grating in a carrot with the potato pancakes. You can even use spaghetti squash for noodles!! Tammy the devious mother!! Item number 23219, dated 95/08/14 07:01:41 -- ALL Date: Mon, 14 Aug 1995 07:01:41 -0400 From: Wendy Murphy (Luhg@AOL.COM) Subject: Re: ADVERTISEMENT? )From: Michael Greenberg )Subject: Re: HEAD HITTING )Did anyone else notice the clear ADVERTISEMENT requesting a )$25 charge for dietary information and making claims which sound "too good )to be true" I did. I e-mailed her privately and got the skinny. I told her I thought $25 was not terribly ambitious for a con artist preying on the desperate parents of hopelessly disabled children. I asked some other questions. She phoned me, _not_ collect as I had instructed her in my post. We talked for over an hour. She only mentioned money to express distress that researchers from overseas had requested info with nary a word about copying and postage costs. After all, such research is generally exchanged among paid professionals, and such expenses are taken care of by the workplace rather than their own pocket. She has a long history of food sensitivities and had therefore done a lot of research on systemically active naturally occuring compounds in foods. She attended some conferences and contacted a Dr. Beecher, who wrote about carotinoid pigments. By this rule, her elimination/challenge identified problems fit into a coherent and predictable class. After she heard Dr. Waring of the UK speak on the deficit in phenol-sulphur-transferase enzyme, she was astounded at the similarities in the specific foods Dr. Waring advised avoiding and her own diet. She put her adopted daughter on the diet, and was amazed with the results. She _and her daughter_ were invited to make a presentation at another conference less than a year afterwards. She has contacted Bernard Rimland, who has advised her to publish a book, which is now in revisions. She prefers to disseminate the information herself for the time being, so that she can follow up with each family to find out whether and why/not they decided to try the diet and how it worked for them. She admits that the sample is currently very small and she has no reason to believe that this particular diet will help x% of people diagnosed with autism, nor can she guess who in particular might be helped. For any details I have misremembered, I take full responibility and I apologize. You may be aware that people often make mention of information they have, and people often request copies. It is customary to offer to pay for copying/media and postage, when applicable. A skilled con artist would have waited for requests to come to her before divulging the price tag. She lists much personal information, and I suppose if you were really skeptical, you could call her (she gave her number) and ask for references. Or call Bernie and ask him about her - he would just love that. Cara wrote: ) IF they have a diet that is so useful then why not openly share it with us? )These same people where at a real time chat a few weeks ago and would )only allude to what the diet might consist of, as they have done here. She gave me enough info I could figure it out on my own if I tried. It's just a whole lot of detail. Kind of like with a gluten/casseine free diet: I can't say I've ever seen anybody put out all the details on a .list. But it's no big secret either. Anybody who doesn't like it is welcome to read Dr. Beecher and Dr. Waring's work and discern which foods contain carotinoid pigments and what the chain of metabolism for these things is (how they're related to p-supher-transferaze enzyme, and platelet efflux of 5-HT) and turn all that into an experimental diet. )That responce was far from the advice and encouragement )that the person posting the question needed or wanted to hear. I think Sandra found an answer she was excited about. For her daughter, at least, it _was_ the answer to SIBs. So that's why she responded with that info under the heading of "head slapping". It may turn out to be a coincidence. We've all seen miracles reported for many kinds of therapy. Or it may be as big a break-through as B6 and magnesium. I ain't waiting another twenty years for duplication testing all over the world. After all, who would fund it? We're talking about a simple diet: there's nothing to market. I can understand a hesitation to hope. I have come close to tears imagining what such a break through could mean for my beloved son. But no one has the right to sign the euthanasia orders on my hopes for the future except me. Doctors who do not tell families about experimental treatments to avoid raising their hopes are doing a disservice. Tell ya what: I'll keep you posted on how Talen progresses and you can decide later. And if I wind up sending in all my boxtops for a plastic de-coder ring, you have my permission to say, "I told you so." Wendy M Item number 23645, dated 95/08/21 02:12:35 -- ALL Date: Mon, 21 Aug 1995 02:12:35 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Getting off wheat Dear Listmates, My developmentally delayed four year old daughter Grace and I have been off of wheat for about a week. At the end of the first day my totally unpotty-trained child asked to go to the bathroom for the third time in her life. (The other two times were immediately after she had been in therapy and when I had been brushing her every two hours.) She has been totally dry since we eliminated the wheat. One time she said, "Mommy, mommy, I can stop my TT because my muscles are strong." She also said she could feel it better. Also, all of a sudden, she is eating new foods and spicier foods and enjoying them. We've been doing epsom salts baths for about a month and a half. Also, my migraine headaches have disappeared, but I think that is more from the epsom salts, since I have only been off wheat for a week. Oh how I wonder if her motor skills might have improved if I had tried this earlier! We go to the environmental health doctor in Dallas this Friday to evaluate Grace. I'm curious what he'll think of this PST enzyme and epsom salts business. Happy with the experimental results, Susan Owens Item number 23649, dated 95/08/21 06:13:00 -- ALL Date: Mon, 21 Aug 1995 06:13:00 EST From: Richard Crooker (0003834619@MCIMAIL.COM) Subject: Re: Getting off wheat Listmates, I'll have to second this one. My son has been off wheat for several years, and gluten/casein free for a year, and it's made a large difference. An accidental ingestion of wheat (it's everywhere!) usually means an accident (day) or a bed wet (night). I think it somehow masks the feeling of having to go. It's a difficult diet to maintain at first, but like anything else, soon becomes habit and second nature. Barbara Crooker Item number 23705, dated 95/08/21 22:30:31 -- ALL Date: Mon, 21 Aug 1995 22:30:31 -0500 From: "Stacye D. Manlove" (smanlove@MAIL.ORION.ORG Subject: Re: Getting off wheat Susan--Just curious. Have you thought of eliminating gluten totally instead of just wheat? We have eliminated gluten and it has made a huge difference (for the better) in our daughter's behavior. Stacye. (smanlove@mail.orion.org) Item number 23706, dated 95/08/21 22:35:16 -- ALL Date: Mon, 21 Aug 1995 22:35:16 -0500 From: "Stacye D. Manlove" (smanlove@MAIL.ORION.ORG) Subject: Re: Getting off wheat Susan--Sorry, I forgot to mention that my daughter also has casein removed from her diet. After 4 weeks on her gluten/casein free diet she verbalized her need to use the bathroom and was "potty trained" from that point on. Every time she "cheats" on her diet she has "accidents." I don't think this is a coincidence. She seems so spaced out every time she ingests gluten/casein. Just our experience, don't know if it applies to your child. Stacye (smanlove@mail.orion.org) Item number 23718, dated 95/08/22 01:28:39 -- ALL Date: Tue, 22 Aug 1995 01:28:39 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Re: Getting off wheat Stacye, You asked... (Susan--Just curious. Have you thought of eliminating gluten totally (instead of just wheat? We have eliminated gluten and it has made a huge (difference (for the better) in our daughter's behavior. Stacye. I guess I'm just trying one thing at a time, although it is probably not much different to go the whole route since most of the useful recipes were compiled by celiacs. But I'm really curious about how different the PST based intolerance for wheat is to true celiac disease. My alzheimers dad seems to have symptoms that might suggest full-tilt celiac, but how would one tell the difference? Allergy tests? Grace does not seem to have as many allergic type symptoms as I do, but I still seem to be having food reactions even with the being off of wheat. But I'm not eating oats, barley or rye, either. But I plan to read the faq on autism's connection to celiac, then I'll be better informed. I just read your other post about eliminating casein, too. I've been dreading that, especially since Grace has spent some time listening to a tape for children denouncing junk food but singing loudly the praises of milk as the best food there is! And, oh, does she love that macaroni and cheese! I've wondered how doctor's advise about getting children off milk. How do you get the missing vitamin/mineral goodies? Thanks for the hint. Susan Owens PS. What changes did you see in your daughter? Item number 23720, dated 95/08/22 06:08:46 -- ALL Date: Tue, 22 Aug 1995 06:08:46 GMT From: Don Wiss donwiss@panix.com Subject: Re: Endless appetite On Mon, 21 Aug 1995 15:40:51 -0400, Peggie Ryan (pryan@NMU.EDU) wrote: )Has anyone had any experience with " endless appetite" ? To Peggie, Victoria, and Judy, Endless appetite, or food cravings, are some of the many possible symptoms found when a gluten intolerant person is consuming gluten. The intestinal mucosa is comprised, and is not absorbing enough food to operate the body. Putting him on a gluten-free diet should reduce these cravings dramatically. Don (donwiss@panix.com) Item number 23749, dated 95/08/22 14:02:54 -- ALL Date: Tue, 22 Aug 1995 14:02:54 GMT From: Don Wiss (donwiss@panix.com) Subject: Re: Getting off wheat On Tue, 22 Aug 1995, Walter & Susan Owens (lwo@IADFW.NET) wrote: )But I'm really curious about how different the PST based intolerance for )wheat is to true celiac disease. My alzheimers dad seems to have symptoms )that might suggest full-tilt celiac, but how would one tell the difference? )Allergy tests? An allergy is a histamine reaction, which is a reaction of the immune system. It produces IgE antibodies. Celiac disease is a food intolerance, or a reaction of the digestive system. The following is currently how it is being tested for: Celiac disease can be screened for with a combination of antigliadin (IgA & IgG) and endomysial antibody testing of the blood. It is definitively tested for by a small bowel biopsy of the mucosa which can be obtained by an endoscopist in the distal duodenum. The patient must be consuming gluten at the time of the tests. Note, however, that we all have at least some IgG antibodies to food proteins, indicating uptake of immunologically active proteins in trace quantities. More on this is in the Reichelt Collection of Net Articles at: http://www.demon.co.uk/webguides/nutrition/diets/glutenfree/menta.html I can easily mail out this 46K document to those without easy web access. As for a connection with alzheimers. Celiac disease is genetic. The family branch where my celiac comes from is the same branch as had alzheimers. Maybe there's a connection... (Glad I'm gluten-free...) )race does not seem to have as many allergic type symptoms as I do, but I )still seem to be having food reactions even with the being off of wheat. But )I'm not eating oats, barley or rye, either. If you are referring to digestive system problems you have to realize that gluten is in almost all processed foods. It may be obvious with something like food starch, or hidden in something like flavorings or natural flavors, which is a popular method of hiding a product's HVP/MSG. )But I plan to read the faq on autism's connection to celiac, then I'll be )better informed. I presume you mean to send GET CEL-AUT PACKAGE to LISTSERV@SJU.STJOHNS.EDU. )I just read your other post about eliminating casein, too. I've been )dreading that, especially since Grace has spent some time listening to a )tape for children denouncing junk food but singing loudly the praises of )milk as the best food there is! You have to remember that the dairy industry spends $40 million a year to promote milk. It is not the best food there is. For one, calcium is better absorbed when eating less protein. Protein pushes it out of the system. Since milk has protein, and most of our diets have enough already... ) And, oh, does she love that macaroni and cheese! Corn and rice pasta both exist. Hopefully the love isn't all in the cheese. )I've wondered how doctor's advise about getting children off milk. How do )you get the missing vitamin/mineral goodies? What missing vitamins/minerals? Calcium is readily available in other foods. The only one I might be concerned of is Vitamin D, and that would only be a concern if one gets absolutely no sun, since that, in evolutionary times would have been the main source. Don. Item number 23760, dated 95/08/22 14:57:08 -- ALL Date: Tue, 22 Aug 1995 14:57:08 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Re: hypotonicity ....(snip) I'm still in euphoria over eliminating wheat from Grace's diet and having instant potty training. She said, "Mommy, I can hold my TT for my muscles are strong." Out of the mouths of babes.... Susan Owens Item number 23885, dated 95/08/24 01:01:59 -- ALL Date: Thu, 24 Aug 1995 01:01:59 EST From: soj@WCC.STATE.NC.US Organization: DD Support Board Subject: ADVERTISEMENT? Susan, I already went through the channels you have described although I truly appreciate your concern-I live it every day. I sent this information to TEACCH, Princeton, Duke, Autism Research Institute, phoned NIH, NIMH, and several other oprominent organizations received it at no charge including notebooks of documentation. Dr. Rimland has been most helpful and with the help of Sara's neurologist (current-last 5 yrs.) I have been told there is a doctor and 2 US institutions working on the necessary permission to try this in institutional controlled environments. I did not want this responsibility and would be most grateful for it to be someone else's burden. However, for a controlled study the restriction of other interventions simultaneously has been written and requested in the "Dietary Intervention" paper. For those of us who are here in the real world doing whatever we think might benefit our child I don't care what other forms of treatment are being used at the same time. As for Sara she was gluten free/casein free/anti-yeast and no preservatives, artificial flavorings/colorings for 5 yrs and was still diagnosed as autistic 18+ at age 10, although her IQ had improved with these the elimination of one additional substance (lutein pigment) was the key to alleviating the behavioral characteristics of autism. This is a multifaceted disorder that is a chain reaction in response to the ImG systems interpretation of the trans-isomer carotenoid pigments Each substance is removed seperately and it takes 4 months t o go onto this diet, the children who are casein/gluten free already are getting results in as little as 5 days. And, as long as it remains my responsibility I will require interaction and follow-up on an individual basis. I know of no other way as I do not have the money to fund a study myself. SOJ Not a scientist, just a parent. Although I study diet compulsively and have since 1969 searching for the answer to personal food intolerance which I found in 1993 (lutein pigment) no reaction to food since that day. Coincidence or Devine intervention? Item number 23890, dated 95/08/24 06:36:00 -- ALL Date: Thu, 24 Aug 1995 06:36:00 EST From: Richard Crooker (0003834619@MCIMAIL.COM) Subject: Re: Getting off wheat Wendy M., Sorry to post this to the list, but there was no individual mailbox on the post-- Lisa Lewis's packet on the gluten-free/casein-free diet is the best place to start ($3 to Bernie Rimland--figure you have the address), or use the WWW site recently posted by Don Wiss. There's no halfway measures to this--it's gotta be all or nothing. But it sure is worth it. Barbara Crooker ))) Item number 24072, dated 95/08/27 21:31:31 -- ALL Date: Sun, 27 Aug 1995 21:31:31 GMT R From: "Lisa S. Lewis" lisas@PUCC.PRINCETON.EDU Subject: Re: Getting off wheat Wendy Murphy (Luhg@AOL.COM) wrote: )Barbara, I am just preparing to begin g/c elimination. When I started )Feingold two years back, my first (small!) shopping took over three hours. ) Would you give me a few pointers? What literature/cookbook/ helpful hint )was the most helpful, and preferably concise and understandable? )Thanks Wendy M At the risk of sounding like a broken record...please see my web page at: http://www.princeton.edu/lisas/gfpak.html This is a World Wide Web version of my paper on this subject. Lisa Lewis Item number 24093, dated 95/08/26 16:00:53 -- ALL Date: Sat, 26 Aug 1995 16:00:53 EST From: soj@WCC.STATE.NC.US Organization: DD Support Board Subject: luein Pigment (wasADVERTISEMENT?) Natalie, Lutein is an alltrans-isomer carotenoid pigment (colored/reversed polarity) similar to beta-carotene, lycopene (which can be converted to beta-carotene). Many of these individuals test as allergic to a beta-carotene containing food (probably slightly over 50%) slightly over 50% in a current study test deficient in Vit A and I do not believe they can manufacture Vit A from the pre-cursor beta-carotene. Others test allergic to a lutein containing food ie corn, strawberry, soy these individuals will not manufacture luteinizing hormone and def. of this hormone in female autistic individuals have have reached puberty has also been confirmed. Gluten containing grain foods (reversed polarity amino acids only 2 of which can be minimally utilized in a normal metabolism). Grain foods also contain carotenoids. Carotenoids have been found to effect the alelles of the chromosomes (genetic expression) Vit A has volumes written on it's ability to effect genetic expression. Many positive results occur with a wide variety of interventions (magnetic therapy-polarity), gluten free diet (reducing the intake of reversed polarity foods and carotenoids as well as the nutrient inhibiting properties known to be produced from ingesting foods containing tannins, lectins, phytates and saponins). There are nearly 3000 carotenoid containing foods and many foods contain more than one and the level is associated with type, soil, location, ripeness. Sara uses the lutein intolerent format but for many it will be the beta-carotene format. Other considerations must be made when implementing this diet such as controlling the intake of the sulfer containing foods, controlling amino acid (protein ) intake. A list of foods containing lutein independantly is not sufficient and this format is not sufficient to supply adequate information. I will be doing a local presentation shortly and my associate in NY is preparing to do one also. I also believe these polyphenolic compounds (carotenoids) bind B6 and create the need for excess B6, I prefer to decrease the B6 binding polypheolic pyrrole structures and allow for normal utilization of B6 in my child. In other words take away the problem rather than treating a symptom. Although each metabolism is unique and some may still need B6 there are enough similarities that dietary intervention can get them to a point whwere individual needs which differ from the collective group can be assessed. I would be glad to talk to you and answer your ?s and provide you the study , articles, and resources I have used. 704-584-4109. Sorry I couldn't completely answer your question. Dr. Beecher at NIH has a 3.5 disc with carotenoid information. SOJ Item number 24131, dated 95/08/29 00:36:17 -- ALL Date: Tue, 29 Aug 1995 00:36:17 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Lutein SOJ I so much appreciate the time you have taken to give such detailed answersto questions. (Oh,no, here comes another one!) If you noticed some of my old posts you might know that I've been exploring the relevance of pheonolsulfertransferase to three generations worth of disorders. My daughter Grace has developmental delays and sensory problems, I have migraines and autoimmune problems, and my father has dementia with some other problems that look alot like celiac. Grace amazed me this past week by becoming instantly potty trained after eliminating wheat. I thought of all the beating-a-dead-horse efforts I had made trying to train her for the past two years, which made me appreciate your comment: )In my humble opinion our behavior modification programs are wonderful but, doing behavior modification on an autistic individual is like trying to rehabilitate a drug abuser who is under the influence. My father has all kinds of celiac symptoms and has a lifetime history of peptic ulcer disease (maybe an underdiagnosis?). I have noticed his behavior after he eats sometimes resembles his behavior on morphine. My question is about lutein. You said that your diet includes limiting lutein pigments. My migraines seen to occur during the supposed-to-be release of luteinizing hormone. Any connection? Incidentally, this particular lowly parent with a BS in English is having a hard time deciphering your biochemical posts. I typed papers years ago for Vanderbilt's Clinical Pharmacology Department, and am not totally lost in technical talk, but am definitely in over my head with this rich gush of information you're supplying. (Are there others out there in netland that feel swamped, too?) SOJ, since you've been studying this for years, were there any books you read on your journey that gave you the background to understand all this medical lingo? I'm impressed with how much you are doing and amazed at what you are willing to take on. Thanks, Susan Owens Item number 24132, dated 95/08/29 00:36:21 -- ALL Date: Tue, 29 Aug 1995 00:36:21 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Re: food intolerances/auto immune disorders/environmental factors. Beth B., I just got finished with an amazing week experimenting with being off of wheat for my daughter Grace, aged 4, developmentally delayed, but not autistic, and myself, sensory defensive and in need of SI therapy. Our amazing results were that Grace potty trained overnight when she had had no prior success at being able to tell if she needed to go or not. I would encourage you to try the gluten free diet, because it is not that hard to pull off in the short term while you decide whether to go for it for the long haul. Just be sure and buy some good tasting new gluten-free foods to make the effort seem more fun. Maybe others who have tried the diet successfully can give you a feel for how long it took them to decide if it was going to work for the long haul. Grace and I went to the Environmental Health Center in Dallas this morning, and the doctor there, after seeing all the strange medical history in my family, has decided to refer me to a geneticist. My family also has lots of autoimmunity, allergies and probably a lot of gluten intolerance, although noone ever knew of the gluten problem, but it could explain a lot of medical mysteries in my family. I'm excited about helping not only Grace, but many others in my family (cousins, too!) who may be able to get on top of their medical problems by looking at this gluten issue. If I understand correctly, the blood tests they do for allergy don't really address the mechanism that makes some people intolerant of gluten. It is more that fractions of the grain molecules look to the brain like neurotransmitters and have effects like opium or morphine in the brain. If the gut is permeable enough, these molecules get into the bloodstream when they are not really supposed to and cross that blood-brain barrier. I get the feeling that with this type of individual, getting off wheat is like stopping a drug habit that one has had with a mind-bending drug. (Correct me, listmates, if I got any of this wrong!) The doctor has ordered for Grace an amino acid profile (to check especially levels of the sulfer aminos) and a mineral profile, as well as the blood test for antibodies to popular antigens, and he may try to do the test for phenolsulfertransferase. (Listmates--Is Dr. Waring the only one whose lab does that test?) Beth, don't feel guilty about what you haven't done yet: it sounds like you've been plenty busy doing very effective and worthwhile things. My father with dementia might have been misdiagnosed or undiagnosed for thirty or forty years, but I'm going to be tickled pink if he responds well to getting off gluten. Wouldn't it be great if he could get some of his functionality back? Hope this might make it seem less daunting, Susan Owens Item number 24227, dated 95/08/30 10:54:25 -- ALL Date: Wed, 30 Aug 1995 10:54:25 PDT From: Kathryn Everest (kathryn_everest.TOR_DEMO@XCI.XEROX.COM) Subject: Re: G/F diet Hi Diane, Wow! You can work a microwave, eh? That makes you a gourmet in my eyes :-) I have recently mastered tea. Actually, I have found the g/f and c/f (casein free) diet difficult only in the following respects: 1. Reading labels and not yet knowing what brands to buy (so it takes me forever to shop). I either shop alone or my husband Tony comes with me to run after James while I read labels. 2. Having to shop at health and gourmet food stores (more stores and more EXPENSE!) I was TERRIFIED about this diet. James lived on toast, cereal and pasta and apple juice. A net-friend has been gently suggesting this diet to me for a while, and when James behaviour got really bad recently, I got desperate. We are also eliminating other things like perservatives and colouring, and so far (only on week four) it's too early to tell. I would encourage you to just try it if your only concern is how you would manage. I've had analysis paralysis on this one a long time. Once I finally psyched myself up to do it, I discovered that it really wasn't that bad. (Eating out however isn't easy). We eliminated milk from his diet and had some great results with that. Everyone on this list has their bias and area of interest. Diet has always intrigued me, but I never took action for exactly the reason you stated. But, I also know that I would be very upset if I FINALLY did it years from now with good results. I'd be kicking myself saying `why didn't I do it sooner!!!!' There are some great resources, like Lisa Lewis' paper, your local Celiac society, the Celiac list (yikes, more mail!!), etc. I guess, in a rather verbose manner am suggesting that it's easier than it sounds. Best, Kathryn Item number 24180, dated 95/08/30 00:01:37 -- ALL Date: Wed, 30 Aug 1995 00:01:37 -0400 From: Parlante@AOL.COM Subject: Re: G/F diet Susan Owens suggested: (snip) ))I would encourage you to try the gluten free diet, because it is not that hard to pull off in the short term while you decide whether to go for it for the long haul. Just be sure and buy some good tasting new gluten-free foo ds to make the effort seem more fun. Susan, Could you be more specific? What particular g/f foods are "good-tasting" and where do you find them? I got the idea that everything had to be cooked from scratch--very daunting to me who thinks the four food groups are Fast, Frozen, Instant, and Microwaved. (Actually I CAN cook, it is just a low priority, I guess.) Item number 24186, dated 95/08/30 00:00:03 -- ALL Date: Wed, 30 Aug 1995 00:00:03 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Stillbirth and SIDS Dear Listmates, Today I took my daughter, Grace, to the doctor to have her tested for abnormalities of vitamin, mineral or amino acid metabolism. She had to be stuck twice for blood samples, and as a consolation prize, we went out to eat for brunch and I brought rice pancakes to substitute for their wheat ones. While asking the manager for permission, I got into a conversation with him. He said his third child was born having little seizures but that they stopped by the time the child went home about a week later. I was mulling this over thinking of all the autistic syndrome kids I have heard about with seizure activity and it suddenly dawned on me that perhaps his child could have the same sort of enzyme problems that we've been talking about on the list. Perhaps the child had been somehow getting gluten, gliadin and casein fractions (or something else toxic to him) from mommy in utero. (Can these chemicals cross the placenta?) After the child was born, he was put on soy formula, and the seizures stopped. At one point, the Dad said, they tried cow's milk based formula, but he couldn't keep it down. He's eleven months old now and rice is the only grain he has eaten to date. Hmmm. I suddenly flashed back to my own first child who mysteriously died in utero at around 20-22 weeks gestation after I had taken a houseguest to a wonderful restaurant that used to serve incredibly delicious and huge dinner rolls (loaves of bread would be a closer description.) Could my child have died of a seizure caused by gluten or gliadin fractions? Her mysterious death (autopsy was considered impossible, but she looked normal) was followed by strange bloodwork on me that led my gynecologist to suspect something similar, but not exactly the same as, lupus. Is anyone out there an expert on the sorts of seizure activity associated with the autistic spectrum? Can opioids cause seizure activity? Can they get through the placenta and can they get in breast milk? Could SIDS be related to this? Could a seizure in utero cause death? What do you think? Susan Owens Item number 24237, dated 95/08/30 17:05:07 -- ALL Date: Wed, 30 Aug 1995 17:05:07 EST5EDT From: Jeanne Prine (JPRINE@MERC.RX.UGA.EDU) Subject: A LURKER UNLURKS Hi everyone. I'm unlurking after reading the list for a couple of months. Thanks for many valuable posts. I can talk but otherwise see many aspects of my childhood and later life mirrored here. I hesitated to post without a diagnosis but couldn't afford a neurologist, so I got my blood and urine tested for excess opioid peptides instead (very inexpensive). I contacted Dr. Robert Cade's project at the Univ. of Florida to get tested. Now my intuitions have been confirmed. (Lisa Lewis's article at http://www.princeton. edu./~lisas/gfpak.html got me started and has instructions for contacting Dr. Robert Cade and his assistant Malcolm Privette). I've been on the casein-free/gluten-free diet suggested by Malcolm Privette for about 1 month. The first week was rough because of severe anxiety and strangely intensified SI problems, but it was worth it because I got a sense of smell back (too strong at first but leveled off), was able to make social conversation (even in small groups!), could focus on faces, did not trance out for long periods of time, did not take hours to unfog mind in the morning, felt no pain in stomach for the first time in years and years, no pains in muscles and joints, and felt actually coordinated (more-or- less) so that I was able to walk freely across the middle of a pedestrian bridge instead of my usual routine of clutching the handrail, having to fix my eyes on a succession of points, and lurching across. I still have some bad days (this is not a miracle cure) but intend to stay on the diet for the rest of my life. I don't have the whole picture yet. Still have yeast problems and don't really understand the ramifications of that. Also wondering how sulfur-transferase deficiency, amino acids, and/or lutein intolerance fit in. I do react very strongly to oil-based paint, lysol (ugh) and those erasable markers mentioned by SOJ in a recent post. I trance out and lose coordination so badly when I'm exposed to paint fumes that I have actually put my foot in a bucket of paint (and also flipped a paint roller tray over) because I couldn't tell where it/I was. The markers make me weird out and start to tic (I have mild tourette's also). Well, I'm going to keep looking for more answers. Thanks again for all your help. Jeanne (jprine@rx.uga.edu) Item number 24245, dated 95/08/30 12:00:56 -- ALL Date: Wed, 30 Aug 1995 12:00:56 EST From: soj@WCC.STATE.NC.US Organization: DD Support Board Subject: Stillbirth and SIDS Susan, Briefly, all our systems work together and the metabolism will compensate as best it can. If the studies confirming lack of the essential fatty acid-arachidonic acid- is lacking in the grey matter of autopsied SIDS infants and studies confirm 75% autistic individuals are deficient in this same fatty acid then we must find out why this essential substance is inhibited from being produced and what side-effescts might occur. In a normal metabolism we manufacture this fatty acid from linoleic/oleic acids (canola oil etc). The arachidonic acid aids in the production of renin (digeston of dairy protein), it aids in the production of the prostaglandins that control external pain stimuli (hmm), it is the parent substance of cytochrome P-450 (p for pigment) an d thereby the pigment intolerence may be the root cause inhibiting the synthesis of the elusive arachidonic acid which is available in very few foods (beef liver, egg yolk-high in lutein pigment and phosphoprotein, and black currants-like a raisin known to be craved by a large percentage of autistic children in the UK). Recommendations to add this fatty acid to infant formulas have been documented and published, I have heard NIH is to proceed with this recommendation. Studies published citing strong evidence that celiac can lead to a diagnosis of epilepsy as late as 12 yrs after gluten intolerence is diagnosed. The similarities between sarcosinemia and autism and the positive effects many experience with DMG the substance that synthesizes choline which is a step in the production of acetylcholine (ACH). ACh the neurotransmitter which can reverse polarity at the cell level. Grain foods and alltrans-isomer carotenoids (colored fruits and vegetables) have the reversed polarity characteristics. Inability to produce Vit A from beta-carotene-Vit A needed to heal mucosal linings(among volumes of other functions) mucosal linings damaged from antibiotics-fungal infections and ImG triggered reactions. Maybe their is a connection after all. SOJ Item number 24269, dated 95/08/31 01:01:22 -- ALL Date: Thu, 31 Aug 1995 01:01:22 EST From: soj@WCC.STATE.NC.US Organization: DD Support Board Subject: Lutein Wendy, Not all fungal infections are candida and not all autistically diagnosed individuals have fungal infections. However, this would be the first test I would want for a child suspected of having autism. I would very much like to know just how high the statistics are in association to fungal infections and I suspect it is astronomical. The damage to the mucosal linings which inhibit the production of essential nutrients manufactured by the flora can be present from allergy/gluten intolerence/fungal infections/vitamin A deficiency all of which have been associated with autism. What I know about endocrinology would fit in a thimble and is from a nutritional standpoint only. I know enough statistics on low levels and deficiencies of hormones such as luteinizing hormone to suspect if my child is not utilizing foods containing lutein it is likely she will not adequately manufacture the LH hormone and will fall into one of the statistics that show this to be a common occurence in these individuals. The positive results that have been achieved when melatonin is supplemented and its connection to lutein can leave little doubt there is a connection to hormone production and pigments. Whether inability to utilize lutein and the inhibition of hormones/enzymes can be connected to fungal infections is beyond my resources. But, I do have research which indicates some antifungals can mimic some hormones and if my child cannot produce a hormone I would much rather she receive a substitute then be given a substance that has been rejected by her metabolism.SOJ Item number 24350, dated 95/09/01 10:16:07 -- ALL Date: Fri, 1 Sep 1995 10:16:07 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Re: COLD/HOT FOODS-ORAL SENSO April, You said: )My Courtney loves crunching ice-cubes. She also loves pepperoni, )lemons, and candied-ginger (kinda hot), and Jamaican-style (hot) )ginger-beer. For the longest time I thought that maybe she didn't )have taste-buds at all. After about a month of epsom salts baths, Grace, 4YO, started talking about smelling things for the first time in her life: "Mommy, that lady's breath is bad" and "This room smells funny." etc. Suddenly, she also started eating more foods, especially more sour ones like salad with creamy italian salad dressing. My husband probably ate less than a dozen foods when he got out of high school and still is a very picky eater. Sometimes he complains of tasting an ingredient in my cooking which just isn't there! What do you think he is experiencing? It seems quite plausible to me, especially since smell and taste are so interrelated, that some of these kids may have a poor or also perhaps an oversensitive, sense of taste. How would we know? Grace has an orally defensive little friend, also four years old, who still doesn't talk and eats a very limited number of foods. Texture is terribly important to this little lady. Could her over-attention to texture be because taste is a non-issue to her? Maybe also, if wheat and milk products are so addictive to someone with a low PST enzyme, and if some PST-deficient persons also have a limited ability to taste, it seems no mystery that they would keep wanting to eat only the foods that gave them that opioid buzz. Food for thought? Susan Owens Item number 24380, dated 95/09/01 22:12:20 -- ALL Date: Fri, 1 Sep 1995 22:12:20 -0400 From: Jerry Bautista (jrb@SMTP-GW.AK.ATT.COM) Subject: Re: G/F diet )Susan Owens inquired about gluten free foods: Susan - though I haven't started our diet yet, I have gotten some good information at: http://www.demon.co.uk/webguides/nutrition/diets/glutenfree/index.html Beth B. Item number 24487, dated 95/09/03 18:10:57 -- ALL Date: Sun, 3 Sep 1995 18:10:57 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Oops! Wheat challenge Listmates, If any of you have wondered what happens when you get off wheat and then get fed it by accident, I have two tales to tell. This mommy wasn't thinking of diet when I dropped my daughter off at Sunday School this morning. (I did think of it when the communion wafers came by). When I picked Grace up after the service, the teacher told us how they studied about the little boy who shared his lunch with Jesus, and that they had had their own loaves (dinner rolls) and fishes (cheddar cheese fish crackers). When my face said oops, she remembered that I had shared at small group about how my whole family was getting off wheat. After church my family went to dinner (no problems yet), but when we got home, suddenly Grace was too tired to walk up the steps or walk over the threshold. When at her request I picked her up and carried her in, she got terribly upset with me and started hitting me (a definite overreaction). About a minute later she started pressing her ear canals and I asked her what was wrong. She said, "You know, Mommy, when the teacher rings the bell for the children to come in?" I'll have to be very vigilant today and tomorrow about potty patrol. On the Alzheimer's front, I called in to ask the day care how the wheat and milk free diet was going for my dad, and she said, "Fine. He didn't have any wheat, just macaroni and cheese for lunch." !!??!! The next morning I called my dad and he was back to being paranoid, and saying "I don't know how to do anything. You tell me what to do." I had carried on a long conversation with him two nights before when he amazed me with his memory and clarity of thought, and detailed questions. His aide a few days before had told me that his diarrhea of several years duration was being replaced by a normal state of affairs, and that he had been telling her to fix him less food. (His appetite was totally uncontrollable before we stopped wheat.) I guess we've had our challenge tests. Hey, and guess what else is happening--my handwriting is improving!! Happily, and trying to be thoroughly, off wheat, Susan Owens Item number 24505, dated 95/09/04 01:26:10 -- ALL Date: Mon, 4 Sep 1995 01:26:10 -0500 From: Walter & Susan Owens (lwo@IADFW.NET) Subject: Stillbirth and wheat fractions I've been speculating about the connection between stillbirth and the PST enzyme and consequent sensitivity to wheat fractions. I wonder if in the group of children who perhaps have PST problems but do make it to birth and have autistic spectrum problems, would their brains have developed differently if they were not "drugged" on milk and wheat opioids in utero? (I hope someone medical will step in here, because I don't know if opioids or similar substances can cross the placenta, but it seems plausible. We keep hearing about heroin-addicted babies.) But I wonder when the same parents have had children who have no AS problems, why these substances might not have affected them? Anyone know when babies in utero make any enzymatic contribution into digesting further what crosses the placenta? Does digestion on their part only start at birth? I need an expert! Thanks, Susan Owens Item number 24512, dated 95/09/04 01:11:34 -- ALL Date: Mon, 4 Sep 1995 01:11:34 EST From: soj@WCC.STATE.NC.US Subject: Two more puzzle pieces? Wendy, The HCl drug I mentioned was imipramine HCl (tofranil) which is also a tricyclic antidepressent. The diet we use is low in pectin containing foods. Provides additional B12 in the "Vegelicious" potato milk. And, does everything nutritionally possible to restore intestinal flora to normal (where large percentages of essential nutrients are synthesized). Research has verified that individuals deficient in B12 have limited ability to absorb this from supplements. It is the last trace element to be synthesized and taken into the system. Serum levels are not always indicative of the ability to utilize this nutrient and therefore deficiencies may be underdiagnosed. Pepsi would certainly be a better choice than pancreatic enzymes IMHO. The carbonation may also be a plus for those with high ammonia urea. Caffeine is neither encouraged nor discouraged on the diet I use for Sara however, I can't tolerate much and therefore it is limited in its availability at home. She knows if she is away from home that Pepsi is a food on her occaisional list. One that will not cause regression if limited to this guideline. If she is offered a choice between Kool-aid/Orange juice/colored sports drink and Pepsi the Pepsi is the only choice and if the Pepsi is diet than she must choose water. She has been able to increase the types of foods in her diet greatly since removing the one pigment and adding the cod-liver oil and primrose oil. We overdid it on her birthday. She had a TCBY white cake with white yogurt frosting. She seems to tolerate gluten in very limited amounts occaisionally. She insisted on 2 small pieces of the cake (more than she has ever gotten at one time in the same month) on Friday she woke with a hangover. She wanted silence, her pupils were glassy and dilated, she was mildly nauseated and her cheeks were flushed. After being off gluten 5 yrs and seeing the intoxication that occured during rare infractions I was amazed to see the hangover effect without the high (maniacal laughter, drunkeness) she use to exhibit. After lunch when she felt better she said too much cake is not an acceptable choice, made me sick. Another lesson learned the hard way.SOJ --end of file-- --------------------------------------------------------------------------- Date: Tue, 5 Sep 1995 00:10:14 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Biomedical Research and Autism There has been quite a lot of comment and a number of queries about various aspects of research into autism. I agree with virtually all of the comments and would like to add to some of them. I think the best thing to do is to split it into two posts. This first will just be a few comments on the current position and the next will be a an attempt at a snapshot of the current position (as I understand it). There is no doubt that "autism" is defined in terms of the symptoms that are observed and so are all of the other variants and associated disorders which seem to increase in number every day. Any attempts to categorise real, live human beings into compartments based upon certain behavioural characteristics is bound to be controversial. As others have stated, it is about as helpful as using height or colour or favourite football team when describing the whole individual. However, if we are to attempt to determine reasons for the differences (which we call symptoms) then we have no alternative than to start the process by clssifying them into groups. Until comparatively recently this has been the only basis available to us. On the whole, biochemical and anatomical studies have produced results which are so variable and confusing that they are meaningless. Certainly, variations have been found between some people with autism and Neurotypicals but not with any satisfactory consistency. On the whole we have not done very well but there are only very limited numbers of people exploring these areas. Virtually all of the biological work that is carried out is either performed or initiated by parents or others with a heavy personal interest in autism and a commitment to seeking answers. Most research is funded by drug producing companies who, on account of their business, have no interest in preventing or curing disease or disabilities. The reason for their existence is to develop and sell drugs. Heart Disease and AIDS are much better bets that Autism. In the past, Universities have had the funding to persevere with research which is less likely to lead to immediate financial benefits (the ivory tower concept). Government agencies would fund Universities to conduct research into "Herbal Remedies" or "Tropical Diseases" or other areas which would not lead to financial reward but these days are over. Official research grants go to those areas where financial benefits are likely to accrue to the Nation concerned. Unfortunately the perception is that the study of biological causes for autism will not result in any financial benefits and grants are not given. Our own group has never received a grant for research into autism and I know that the same applies to the other European based teams working in this area (Reichelt; Waring; Gardner etc.) I understand that the situation is pretty similar in the US. Our own work is funded by individual donations and fund raising efforts; it is performed by colleagues and undergraduate students and, in our case, supported by my employers (University of Sunderland) who have been superb. It is wrong but the only way that currently exists to fund basic biological research is to raise the funds ourselves or to otherwise influence agencies into providing the funds. Otherwise we will still be in this position for many years to come. Paul Shattock (Having got that off my chest I will get on with Part 2.) --------------------------------------------------------------------------- Date: Tue, 5 Sep 1995 01:28:13 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Biomedical Research into Autism (Part 2) It is impossible to cover all aspects of research in a single posting so, like all arrogant researchers, I will concentrate on those aspects that I find interesting. Our own group are unashamed subscribers to the "opioid excess" theory of autism as first enunciated by Panksepp. He was struck by the similarities between the "symptoms" of autism and the effects of opioids on animals. Reichelt suggested that the source of these "opioids" could be peptides which result from incomplete breakdown of certain foods and in particular casein from milk and gluten from wheat and other cereal products. It has been demonstrated that if casein or gluten are mixed with stomach enzymes, opioid peptides (known as casomorphins and gluteomorphins) will result. Normally these would be broken down further into individual amino acids bit if the appropriate enzymes are not present or are otherwise inhibited the peptides will persist and could get out of the gastro-intestinal tract and into the blood. From here, the majority will be dumped in the urine which is where Reichelt, ourselves and others find them. Some could enter the "brain" where they could either have direct opioid activity themselves or so swamp the bodies natural enzyme systems which break down our natural opioids (endorphins) that these persist and exert their effects. These effects will include disrupting neurotransmission in all of the main systems (Dopamine, Serotonin, GABA etc.). Consequently, perceptions by all of the senses (hearing, sight, taste, proprioception, pain etc) will be affected to a varying degree. At the same time, so will the ability to filter out what is important from what is not. These opioids constitute an important element in the immune system. The Brain and the immune system communicate by means of chemicals of which opioid peptides form an important group. Depending upon their concentration they will either stimulate or inhibit the immune system (a gross oversimplification for which I apologise). Anything which either increases or reduces the availability of these peptides to the brain could influence the sy