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. --------------------------------------------------------------------------- Date: Thu, 5 Jan 1995 11:52 Reply-To: Maxwell@lamg.com Subject: Gluten and Autism The following was posted on the AUTISM LISTSERV(R), and may be of interest to those following the impact of gluten on developmental disorders: Subject: Biochemical Research into Autism From: "Brenda O'Reilly" (autism_aia@PIERS.DEMON.CO.UK) 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, all 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 --------------------------------------------------------------------------- Date: Sat, 4 Feb 1995 10:29 From: Jean Cockburn (Jean_Cockburn@DOUGLAS.BC.CA) Subject: Seeking assistance female 29 autistic Please excuse my sending a message before I have spent time on this list and have determined if this is appropriate. I understand that an intolerance to gluten or casein could be the reason for the problem that I describe below. I am trying to find help for a friend's niece who is very ill. The niece is a 29 year old female, diagnosed with autism as age 6. She is currently suffering from symptoms of manic depression and schizophrenia, and has been so for 6 months. She has been a patient at Alberta Hospital for 3 months, where the medical personnel are having no luck in treating her. They have tried electric shock treatment, to no avail, and may try it again. Any help or advice would be most greatly appreciated. Jean Cockburn cockburnj@douglas.bc.ca Reference Services Librarian Douglas College Library P.O. Box 2503 New Westminster, B.C., Canada V3L 5B2 Phone (604) 527-5184, Fax (604) 527-5095 --------------------------------------------------------------------------- Date: Thu, 23 Feb 1995 16:42 From: maxwell@lamg.com Subject: New research study on Autism & Celiac 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 - Determine if you are interested in applying to be a research subject. 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 advise, 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 MAXWELL@LAMG.COM (do not reply to the entire Celiac list!). Step 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 MAXWELL@LAMG.COM (do not reply to the entire Celiac list!). 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'. --------------------------------------------------------------------------- Date: Thu, 2 Mar 1995 15:02 From: Beth Vail Jones (beth@COL.HP.COM0 Subject: Going off the diet to aid diagnosis Hi, My son Andy is almost 4, and autistic. He has had digestion problems since he was tiny (colic as an infant, followed by frequent recurring diarrhea of unknown origin). Our previous pediatricians ignored the diarrhea and apparent digestive discomfort, making non-helpful suggestions such as "dilute his juice", "he's just over-sensitive", etc. In late September, after I thought the blood tests had been done for CD, we put Andy on a (not-very-strict) no-gluten and no-casein diet. It turned out that the blood tests had NOT been done, so in mid-October Andy again resumed eating regular food. The CD blood tests were finally done in late October, about one week after resuming a normal diet. The blood was sent to Specialty Labs in Santa Monica. Results were "normal". In November, we again began a casein-free diet. This seemed to help a little, but the occasional diarrhea continued. At Christmas, after a particularly nasty round of diarrhea, I decided it was time to try a gluten-free and casein-free diet. This decision was based on what I've heard of possible connections between gluten and autism, plus Andy's digestive problems, plus probable celiac disease in our family. Andy's digestion has improved again, and his disposition has improved a lot. He used to appear to have frequent abdominal discomfort (he's not able to describe what he's feeling, so we could only guess), followed within a few hours by an attack of smelly nasty diarrhea. Now these episodes are rare. Last week he ate some play-dough (made with wheat flour) and for the next two days he had a nasty bout of diarrhea and odd behavior. We have a new pediatrician, and Andy has finally been seen by a pediatric gastroenterologist. The GI guy said that from Andy's history, it sounds possible that Andy might - or might not - have CD. (He told me about the "celiac physique" mystique that he firmly believes in, which means a child with meaty buttocks is not likely to have CD. Apparently he didn't believe that Andy's buns could have filled-out during the preceding 6 weeks on the GF diet!) The GI guy will not even try to do any tests on Andy until we have returned Andy to a normal diet for at least one or two months. The GI guy says any tests are pointless as long as Andy is on a GF/CF diet. He says there's no rush to do the tests - we could even wait a couple of years if we want. He says that *IF* the tests indicate possible CD, he prefers the triple-biopsy approach to diagnosis. Has anyone else gone through this on-diet/ off-again nonsense? Andy has become pretty accustomed to the the diet, and I hate confusing him with rule changes every couple of months. Not to mention the possible discomfort "regular" food may cause him. On the other hand, if there's something else going on, or even CD with untreated side-effects, I would prefer to know what is really causing Andy's digestion problems. In the long run, it seems better to get an accurate diagnosis so that as Andy grows up we/he will know for sure what food(s) are a problem for him. We have decided to resume a normal diet starting this next weekend. I am guessing that by Monday Andy will have diarrhea and behavior changes. Nothing like setting expectations, huh? :-) Sorry for the length of this message. I hope someone can offer insight on this frustrating diagnostic process. Beth Jones Colorado Springs, CO --------------------------------------------------------------------------- Date: Thu, 6 Apr 1995 09:40:36 EDT From: Lisa S Lewis (LISAS@PUCC.PRINCETON.EDU) Subject: Autism and Celiac Disease...a different slice of bread I am a member of a small group of parents and professionals who have spent a great deal of time researching this area. My son has autism and is extremely gluten sensitive. I have written an 18 page paper on my experience with a GF/ CF diet, which can be found at http://www.princeton.edu:80/~lisas/gfpak.html for those who have Netscape or Mosaic or other world wide web access. (The formatting isn't perfect... still working on that, but it's readable.) If you don't have access but would like to see this, email me privately. Or search the archives of celiac because I posted most of it some months ago. While I personally feel this is an extremely important and promising area of research, I feel it necessary to say: 1) While many autistic children's behavior and health improve on a CF and GF diet, it is NOT the experience that MOST of them improve enough to pass for non-autistic. It's just not true. 2) In all likelihood, autism is a disorder with multiple etiologies. It thus is unlikely that ALL autistics would derive vast benefit from any one treatment. Unfortunately, so far, even very promising treatments have led to "recovery" for only a small number of individuals. 3) Parents of autistics are EXTREMELY vulnerable to snake oil salesmen, and many have spent enormous sums of money chasing after that magic bullet. Alas, it's not been found. This includes dietary intervention. It has helped MANY children, but that is not the same as saying "if you keep your child on a strict enough gf/cf diet he will be cured." 4) The whole autism field is filled with people who passionately believe in different theories of autism and its treatment. There is no established cure. The gluten/casein work is unfortunately not considered mainstream, and anyone espousing it can expect to be vigorously challenged. Gluten/Casein may certainly be PART of the answer, but it is certainly not the WHOLE answer....I wish it was! I also wish that more parents would try this, because it is far less dangerous than most drugs being prescribed to children, and it can't hurt them! Lisa Lewis P.S. Something that most parents (of normal OR Celiac children) don't realize, is that EXTREME pickiness is an almost universal characteristic of autism. (I'm lucky that this is not true for my child.) Many kids simply do not eat more than two or three foods (usually gluten filled at that!) Why this is true is not known for sure...autistics have a great deal of sensory confusion (the brain isn't interpreting incoming stimuli properly) and thus some have exquisitely oversensitive senses of smell or touch (tactile defensiveness). This is undoubtedly part of the reason. In any event, it makes changing the diet of these kids FAR more challenging than for another type of child. --------------------------------------------------------------------------- Date: Thu, 6 Apr 1995 13:13 From: CBraffet@AOL.COM Subject: autism list/gluten,casein I posted this on the autism list, thought perhaps some of you might find it interesting... 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 great teacher 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 --------------------------------------------------------------------------- Date: Thu, 6 Apr 1995 13:23 From: "Stephen B. Ronan" (sbr@WORLD.STD.COM) Subject: Re: Autism and Celiac Disease...a different slice of bread On Thu, 6 Apr 1995, Lisa S Lewis wrote: [...] > I am a member of a small group of parents and professionals who have spent a > great deal of time researching this area. My son has autism and is extremely > gluten sensitive. I have written an 18 page paper on my experience with a GF/ > CF diet, which can be found at http://www.princeton.edu:80/~lisas/gfpak.html > for those who have Netscape or Mosaic or other world wide web access. (The I just tried this address but couldn't get a connection. It worked after removing ":80" so that it became: http://www.princeton.edu/~lisas/gfpak.html Thanks. Definitely worth a visit! Steve Ronan sbr@world.std.com --------------------------------------------------------------------------- Date: Thu, 6 Apr 1995 15:31:08 From: Karen Bulmer (kbulmer@MERCURY.UAH.UALBERTA.CA) Subject: Attention Deficit Disorder With all the discussions on a GF diet possibly being helpful to the well-being of an autistic person and reading that there is some kind of link between ADD and a celiac and ADD. 1) Are there any concrete type studies like the ones mentioned in previous posts regarding autism and GF diet? 2) If I am celiac and have one son diagnosed as celiac and the other son has major bowel movements every day (had a enema in January, due to severe constipation, and the doctor was amazed at the size, he's 5) and he has Attention Deficit Hyperactive Disorder and has a mild-moderate learning disability "Language Processing Disorder", is he a good candidate for being blood tested, etc for possibility of CD? 3) If so how does one go about getting these done in Alberta, Canada? karen , edmonton, alberta, canada --------------------------------------------------------------------------- Date: Thu, 6 Apr 1995 22:55 From: BethnAndy@AOL.COM Subject: Re: I've Been Flamed!! Dear Don, Welcome to the bizarre reality of having a child with autism. It can make the best people bitter, resentful and downright cynical. At least half of the people I encounter on a daily basis are looking for a 'magic bullet', a drug that can make all the problems disappear. Most people do not have the comprehension, or background to understand that diet can make a dramatic difference in anyones life, be it a low fat, diabetic, PKU, gluten free, etc.( It simply depends upon a person's biochemical and genetic makeup.)This is also directly reflected in the medical community, as anyone with celiac can attest to. There is little or no emphasis placed on the 'realities' of changing a diet, and less understanding of the biochemical relationships. Indeed, when was the last time anyone had a specific recommendation for vitamin therapy from their family physician? If a diagnosis is made that require nutritional counseling, one is referred to a registered dietician. As within the medical field, dieticians have areas of concentration, ie, diabetes, heart disease, etc. Very little has been done at all on autism, it is buried in the archives, at best. In fact, even amongst the 'informed', there exists a great deal of dispute, as in the celiac community..how much to eliminate, why, etc... Unfortuneately, there are many 'professionals' that prey on the parents of children with disabilities (almost any disability). They generally promise the world, charge outrageous fees, and deliver little, if any, result. The field of autism is particularly densely populated with these individuals (that makes it very difficult for the 'honest' professionals). You have to remeber that the disorder was originally described as a psychologically based disorder, and then was followed by the description 'cold, unfeeling parents'...the 'refrigerator mother syndrome', as it were, causing the syndrome. This sets up the family population for the less scrupulous, as the almighty buck is so powerful. There are a number of VERY reputable scientist attempting to define the biochemical underpinnings of autism, and they are indeed looking at the fact that at least 50% of the population does respond very well to dietary intervention. I must disagree on the point made that researchers are always in it for the money. I have personally done all my research without funding (which has so much to do with the fact that my family lives well below the poverty level). I am also personally aware of several other researchers that continue their work, long after funds are depleted. It is quite interesting that of the 150 grant applications to NIH in 1994 for research in autism, only 6 were biochemically oriented.(And, those 6 all were linked to serotonin...) All the rest were of a 'psychological' orientation. It remains obvious, more than 50 years after the description of the disorder, that the 'professional community' still regards autism as a psychological/emotional issue. We never use the term cure during any of our presentations on dietary intervention. In fact, we often open by saying that if someone is looking for a cure, they are in the wrong room. We describe it as an additional method of management, as autism is a multi-faceted disorder, and requires a multi-modal system of approach. We offer parents, caregivers and practitioners enough information to start them on a track that may eventually lead them to the same conclusions many have already reached. The information must be available, so that parents,etc., can make an informed decision, for or against, and not have to rely so heavily on the existing predujices and unscrupulous individuals that plague our community. Anyway, don't take it too much to heart that you were 'poo-pooed'. Those that want to know will continue to seek out the information. Those that don't, won't You can't do anything about the decision they are making. And, if it helps one person, or one family, isn't it worth it? It is not a cure...our triplets have been on the 'diet' for 4 years this month. They are still diagnosed with autism. They have made tremendous gains, many of which dissipate immediately with any reintroduction of eliminated foods. Therfore, we strongly credit the diet for having such a positive influence on their lives. BUT our intervention plan is not restricted only to diet, and other factors must be considered as well. We do not credit any single approach as being the 'end all-be all' answer, and we try to keep an open mind. Of course, we also try to find some logical, or scientific basis for trying any new approach. Well, I have rambled on long enough. Maybe no one will be able to thank you down the road for the suggestions you made on the net, but someone,undoubtedly, will be very grateful.Oh, and try not to judge the community on such a terse response of one individual.(I am sure you won't...) For the parents, Beth --------------------------------------------------------------------------- Date: Wed, 19 Apr 1995 10:41 From: CBraffet@AOL.COM Subject: Re: Lunches for Celiac Kids A number of us with children who have autism and gluten/casein sensitivity also have trouble using most of the recipes developed for people with celiacs only. Along with gluten, we have to avoid all milk products and most milk substitutes (most of the soy milks have added casein). To add to that, my son also cannot tolerate eggs and tree nuts. A couple of bread recipes for sandwiches I use are: Flatbreads 1/2 c. amaranth flour 1/2 c. tapioca flour 2 tsp. arrowroot powder 2 tsp. light, cold-pressed oil 1/2 cup water 1/3-2/3 cup extra flour for kneading Sift the flours with the arrowroot powder. In a separate bowl, mix the oil and water, then add to the flour mixture. Work the dough with a fork and then your hands. Knead briefly and roll into a ball. Divide the ball into 8 parts. Roll each part into a ball and pat flat. Sprinkle each bread with flour and roll between 2 sheets of waxed paper with a rolling pin. Turn frequently while rolling, and lift the waxed paper occasionally to add flour so the dough does not stick. The bread should be rounded and about 1/8 inch thick. Preheat the oven to 400 degrees. Lightly oil a frying pan and heat to medium-high. Put one flatbread in the pan and heat 15-20 seconds on each side. Immediately put bread in oven and heat 3 minutes. turn over and heat 1 1/2 - 2 more minutes. The bread will puff up a bit in the oven, but not as much as traditional pita because it has no yeast. Re-oil the pan with a paper towel dipped in oil, and repeat procedure for each flatbread. Cool breads before storing in plastic bags. Makes 8 breads. ----------------- Chick Pea Chipatis 1 cup chick pea flour 1/3 cup water 2 Tbs. arrowroot powder 1 Tbs. light, cold-pressed oil Optional: 1/4 tsp salt Mix all ingredients well. Roll into 1" balls and pat flat. With a rolling pin, roll out pastry-like rounds. Heat a lightly oiled frying pan until very hot. Reduce heat to medium high and heat each round for 1-2 minutes on each side, until warmed and slightly browned. Serve hot or store in the refrigerator. Chipatis may be eaten hot from the pan, or cold, or lightly toased. They are wonderful with rice or Indian foods, and they make a good bread substitute for sandwiches. This recipe makes 8-10 chipatis. These recipes I found in a vegetarian cookbook, _The All Natural Allergy Cookbook: Dairy-Free, Gluten-Free_ by Jeanne Marie Martin, Harbour Publishing, P.O. Box 219, Madiera Park, BC Canada V0N 2H0. This book has some good recipes, not all truly gluten or dairy free however. Another one that my son likes for lunches is: Tofu Fruit Smoothie 2 cups fresh strawberries 2 large bananas 4 oz. tofu 1/8-1/4 cup liquid sweetener (honey, fructose, whatever works for your child) 2-3 tsp vanilla flavoring (I'd use the vanilla bean in the potato vodka tip) Water or Juice Freeze the fruit before blending . (You can also use blueberries, rasberries, peaches, pears, kiwis, whatever your child likes and can tolerate.) Blend all ingredients thoroughly, adding just enough water or juice to bring the smoothie to the desired consistency. Remember that if your school provides hot lunches for other children, then you are well within your ADA, Sect 504 rights to ask that they heat up your child's lunch for him. In fact, by law, they are required to provide him with a meal he can eat if they offer a lunch program to the other non-disabled students however it will be a cold day you know where before I'd trust my son's health to a cafeteria worker. They might need this gentle reminder though when you ask for a reasonable acommodation, heating up his prepared lunch for him. It certainly is easier to prepare good tasting and balanced lunches when you're not limited to things that can be eaten cold. Let me know how these recipes work for you...Chris Delnat, CBraffet@aol.com --------------------------------------------------------------------------- Date: Fri, 21 Apr 1995 08:53 From: CBraffet@AOL.COM Subject: Re: Constipation and CD On 2/20/95 Kathy Harden wrote: >My 2 y old nephew (his mom has CD) is very large (off the charts for both >height and weight) and so by no means appears to have CD. However, he does >have severe problems w/ constipation. When my sister suggests CD to the >Dr., he says it is impossible that Chad is malnourished given his size. I was wondering whether other children who have constipation (rather than the >more typical stool problems) as the presenting sign of CD are of normal or >above average size. It seems to me that w/o the constant diarrhea, the >weight loss and stunting might not occur. Thanks for your input. My 15 year old son, who has autism, was also off the charts in size when he was young. He had continual constipation/ feces retention. At around five he began having bowel movements in the middle of the night and we'd wake up to murals etc. The doctors always blamed this on a behavioral problem. At around that time we also began to notice the size of his bowel movments increased...to what we not-so-delicately referred to as 'elephant poop'. I mentioned this to doctors over and over again, but not one of them seemed to see any significance in this. At around eight years old he began to get fat. He ate compulsively and never seemed to know if he was full or not. At around 12 years old he began to have frequent, still voluminous, loose stools. The nocturnal feces smearing episodes would come in clumps, every night for a whole month, then a two or three months hiatus. When he was fourteen I made the gluten/casein connection between his bowel, behavior problems. I don't think, and never did think, that the nocturnal bowel movements were part of a behavior problem (painting with it might fall within that realm). They disappeared when Andrew went on a GF/CF diet. His whole digestive system became normal for the first time in his life. He's lost all his excess weight over the past year and the only time he has bowel problems is when he gets something off of his diet. (Easter basket stuff from the other children has been particularly problematic this past week) I also thought it was significant when I asked a young lady who is verbal, has autism, and who also had periodic problems with nocturnal bowel movements why she did it. Her answer was "I couldn't help it, I couldn't feel it until it was to late." I would take the off-the-chart growth seriously and thouroughly investigate it. Something may be going awry, as was happening with my son. Maybe not but maybe so. Given the many positive changes the GF diet has provided for my boy, I can't help but wonder what life would have been like for him if I'd found out when he was two or three.....What if???..... Chris Delnat, CBraffet@aol.com --------------------------------------------------------------------------- Date: Wed, 26 Apr 1995 12:43 From: Harriet Barnett (hbarnett@MIT.EDU) Subject: gluten intolerance and autism Hi, I've been enjoying reading postings from you all for about three months now, but I haven't written anything till today. It seemed appropriate to do so now, this month being the second anniversary that my ten-year old autistic son has been on a gluten-, casein-, and sugar-free diet.I am happy to report that he gained 20 pounds in the two years, when typically in the past he gained at most 2-4 pounds a year. We haven't found the diet to be the nightmare that I anticipated. Andrew is incredibly catholic in his tastes and cooperates fully, and of course this helps tremendously. We celebrated the anniversary with a delicious (but of course expensive) gluten- and dairy-free pie from the Natural Feast Corporation which I highly recommend. The crust is composed of rice, tapioca and potato starch flours which is so delicious that I had to limit how much my daughter (who has no digestion problems) ate. For your information four of their pies are dairy free, two are not. I think they're located here in Massachusetts, but they have a toll-free number (1-800-748-2772). I'm not sure how they ship them since the pies are frozen and uncooked, but I pass this information on anyway for all of you who like yummy desserts. For those of you with autistic children, I'd like to suggest that you consider some other tests that our holistic doctor suggested. She wanted to get assessments of Andrew's vitamin, mineral, and amino acid profile. Of all of these the most interesting results came from the latter test which showed that Andrew had enormous deficiencies in over half of the twenty or so amino acid, and interestingly, all of them were the essential amino acids (i.e. the ones you get from diet, the body can't make them). He now takes two daily supplements (branched chain and free amino acid capsules) and when we repeated the amino acid test a year later he was well within the normal range. I'm happy to expand on any other findings we've had for the subset of you interested in food intolerances and autism, a most intriguing topic. Harriet Barnett , hbarnett@mit.edu MIT Cambridge, MA --------------------------------------------------------------------------- Date: Fri, 19 May 1995 10:02 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Re: Almost famous! Ii is good to learn, from Timothy Partridge's post, that the information about this list has finally appeared in "Cross Grain" but it is a pity that there are no details of kow to gain access. The UK Coeliac Society were told all about us as soon as the list was announced. I, personally, contacted them twice by phone and once by letter to provide full details of how to access. As some members will know, there are many parents of children with autism (and perhaps some other conditions) who attempt to utilise gluten-free diets to help their children. Unfortunately, the UK Coeliac Society is not prepared to give dietary advice to anyone unless there is an official diagnosis of coeliac diease. No doubt there are excellent reasons for this conservative approach but, to an outsider, it hardly seems the approach of a dynamic organisation fighting for the improved health and welfare of its members or others with severe difficulties. Paul Shattock --------------------------------------------------------------------------- Date: Sat, 17 Jun 1995 09:21 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: Digesting fat I would like to introduce myself. I have a 5 year old daughter who is NT (neuro-typical or "normal") and a 4 yr. old son w/ Autism. We have had my son on a gluten free/ casein free diet on and off for about 6 - 8 weeks. I say on and off because he was getting some gluten and casein containing products when we weren't looking and some (like Ketchup) because we didn't know they had gluten (or casein). I would be interested in lists of easy - to - find "legal" products (if there are any), cookbooks, fast food and eating out ideas, etc. We have found a mail order catalog (The name escapes me at the moment). We are using Soymage cheese, Rice Dream, Tapioca or Brown Rice Bread by ENER G (or making my own using Bette Hageman's recipes). I would be interested in locating crackers and cheese/dairy substitutes. I have an Aunt w/ Celiac Sprue (not a blood relative but by marriage) but I do know of 2 families w/ a history of irritable bowel syndrome and/or Celiac who have a child w/ Autism. My mother has had in the past what her doctor called Irritable Bowel. When my son eats products w/ gluten he has MAJOR TANTRUMS and is extremely non-compliant. When he eats (too much) casein he has diarrhea and tends to be whiny. I have been letting him have small amounts of casein - containing products. I owuld like to hear from parents of other children w/autism. Does the sensitivity to the casein magnify the sensitivity to the gluten? Should I remove ALL casein even though small amounts don't cause visible behavior or physical problems? We did not do urine test (not potty trained) or blood (could not afford it). Thanks in advance. Jennifer --------------------------------------------------------------------------- Date: Sat, 17 Jun 1995 22:32 From: Will Estes (westes@USC.COM) Subject: Casein Why did you key in on casein if your son is celiac? The kind of milk intolerance associated with celiac disease is lactose intolerance. The body lacks the lactase enzyme needed to break down milk *sugar*. The intolerance is not for milk proteins. I have heard that some people do have allergic reactions to milk proteins, but this would probably be a totally different condition, unrelated to celiac disease. Have you taken your son to an allergist and had them do a skin test for food allergies? The tests are not very reliable, and can produce false positives, but it's at least a basis for doing some dietary experimentation. I also found (surprisingly) that my allergist knew a lot more about dietary issues and how to make my diet comply with particular restrictions than my gastroenterologist did! Allergists are used to dealing with food intolerances of a very wide variety, so I guess they need to understand dietary restrictions. -- Thanks, Will Estes Internet: westes@usc.com U.S. Computer Saratoga, CA 95070 --------------------------------------------------------------------------- Date: Sun, 18 Jun 1995 07:39 From: Candace Timpson (CFBT2MT@AOL.COM) Subject: Re: Casein As a mother of an almost 8 year old with autism, let me support the previous post re celiac and casein. Some of our kids don't test positive for classic celiac. They do have neurological rather than solely GI allergic reactions to gluten and casein. They are just as gluten (and casein) intolerant, but it doesn't necessarily manifest itself the way traditional celiac does. To provide the mother with more info, apparently the proteins get into the bloodstream, go to the brain and can look like pseudo-neurotransmitters. Gluten tends to make the child tantrummy and inflexible, casein can seem to have less effect until you try a classic challenge, then you can really see what it's doing to your child. Be very strict about the casein for 2 weeks or so, then let him have something really toxic like macaroni and cheese (both gluten and casein) your child may look more psychotic than autistic as a result. You may not want to bother to try this as it's very scary and not too great for the kid. Also, try epsom salt baths at night, every night for 2 weeks or so while maintaining a STRICT gluten and casein free diet, see what happens to the childs language and then let me know. Many parents doing this have seen dramatic to subtle improvement in mood, cooperativeness and language, as well as motor skills. Sorry if this has all been discussed in earlier posts. Candace --------------------------------------------------------------------------- Date: Mon, 19 Jun 1995 09:34 From: Lisa S Lewis (LISAS@PUCC.PRINCETON.EDU) Subject: Re: Casein >Why did you key in on casein if your son is celiac? The kind of milk >intolerance associated with celiac disease is lactose intolerance. >The body lacks the lactase enzyme needed to break down milk *sugar*. >The intolerance is not for milk proteins. > Jennifer didn't say her son had celiac disease...she said he is autistic and on a gluten and casein free diet. This has been discussed at length in the early days of this list. A subset of autistic kids respond very well to such a diet--whether or not they are 'celiac' depends on your definition. Most would not, I believe, test positive on the usual panel of tests. Casein is a protein that is very similar to the gluten protein, and many (but not all) autistics who respond well to the diet have problems with both gluten and casein. For my own son, I see a HUGE (behavioral) reaction to gluten, but in limited amounts he handles casein ok. He is NOT allergic to wheat or dairy, nor is he lactose intolerant. For more information about the association between developmental disability and gf diets, I refer you to my web page: http://www.princeton.edu/~lisas/gfpak.html Lisa Lewis --------------------------------------------------------------------------- Date: Thu, 22 Jun 1995 10:40 From: (Maxwell@LAMG.COM) Subject: Reichelt: Schizophrenia and diet A guest post from Kalle Reichelt, MD, PhD (in reply to the recent posts on this topic) Hi. I would like to draw your attention to a wee paper from us (1) on diet and schizophrenia ,where we followed completely blind 10 semichronic (not the best starting point) male schizophrenics for 1 year. We could conlcude : a) That both urinary peptide excretion and rating scales (Comprehensive Pyschopathological rating scale and Whitaker Index of schizophrenic thinking) as well as clinical state improved slowly on diet, with regression in those off. This was a crossover study. b) It is not unreasonable that changes will be slow because the kidneys are efficient peptide, aminoacid and protein preserving organs. c) The trophic changes in brain in schizophrenia established macroscopically and microscopically in a great many publications the last 10 years, would take time to correct if at all possible. Probably not completely being maturational defects to some extent ( 2).There is also the problem of an optimal timing for maturation of nerve cells as demonstrated in the visual cortex. This means that experiments on chronic cases is a poor way to test the hypothesis. Fairly fresh cases would be ideal. We have recently been able to demonstrate the presence of at least 5 (five) peptides with opioid activity in urines and dialysis fluid from schizophrenics that react to antibodies against bovine casomorphin 1-8.One of these cochromatogrpahs and has the same amino acid composition as bovine casomorphin 1-8.(Reichelt submitted ; as in autists (3)).The very fulminant psychosis seen in post-partum psychosis seems to be mediated by human casomoprhin (4) and demonstrates that such peptides do have access to the Central nervous system (CNS). Furthermore IgA antibodies against gliadin .beta-lactoglobulin and casein are increased in male schizophrenics (5)indicating a connection.NB: The biopsies were normal so that this is not coeliac disease, but a state with increased transmucosal protein/peptide transport. After all uptake in small amounts of intact protein and peptides is well documented (see earlier communications) WE think therefore that it is important to be gluten/gliadin free and milkprotein free if diet is to be used.The more so because gliadinomorphin and casomorphin are very similar and gliadinomorphin is part of the coeliac disease peptide B3142(6) Gliadinomorphin : Y-P-Q-P-Q-P-F Casomorphin(b) Y-P-F-P-G-P-I etc. There are a series og gluten derived opioids too. This is one of the reasons why we remove both protein sources in autistic syndromes too (2,7,8)with again long term but clearly measureable effects and regression in all who quit diet. The paper that was read to Dohan has been changed to : Can schizophrenia be reasonably explained by Dohan s hypothesis on genetic interaction with a dietary peptide overload? . It is hard ot get this published because it goes against the present trends. However, I think it extremely important so I keep trying ( I am of course rather partial to the hypothesis which makes it difficult). I find it remarkable that given the complete lack of aetiology directed treatment that a proper clinical trial should be so difficult to establish.After all also an American has published data along these lines (9) using our old urine screening assay.Our new technique based on Shattocks groups work in the UK but changed a little( Reichelt in prep) is of course available to anyone who is interested.It is fast and with fewer false positives.They are also wellcome here to learn by doing. Finally it should be stressed that opiods do have maturation inhibitory effects in rat brain (10),which would fit Crows(2) data quite nicely . References 1: Reichelt KL et al (1990) The effect of a gluten free diet on glycoprotein associated urinary peptide excretion in schizophrenia J Ort Mrd 5: 223-239. 2:Crow T(1994) Aetiology of schizophrenia .Current Opin.Psychiat7: 39-42 3:Reichelt Kl et al (1991) The probable etiology and possible treatment of childhood autism . Brain Dysfunct. 4:308-319. 4:Lindstr|m LH et al (1984) CSF and plasma beta-casomorphin-like opioid peptides in post-partum psychosis. Amer.j psychiat. 141:1059-1066. 5: Reichelt Kl and Landmark J (1995) Specific IgA antibody increases in schizophrenia. J Biol Psychiat37:410-413. 6. Wieser H et al (1984) Amino-acid sequence of the coleiac active peptide B 3142. Z Lebensmittel Untersuch Forsch 79:3371-3376. 7:Knivsberg A-M et al (1990) Dietary intervention in autistic syndromes. Brain Dysfun.3:315-327. 8: Knivbserg A-M et al (1995) Autistic syndromes and diet .A four year follow-up study of 15 subjects. Scand J Educat. Res : In press (accepted) 9: Cade R et al (1990)The effects of dialysis and diet in schizophrenia Psychiatry: A World prespective 3:494-500. 10:Zagon IS and Mclaughlin PJ (1987) Endogenous opioid systems regulate cell proliferation in the developing rat brain .Brain Res 412:68-72 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 --------------------------------------------------------------------------- Date: Fri, 23 Jun 1995 14:28 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: Diagnosing Celiac's (was couple convicted...) When I mentioned putting my son on a gluten free diet for his autism my son's Pediatrician said that the "allergy" I was referring to was Celiac's Disease and that my son couldn't possibly have that because only person's of a certain Ethnicity (I forget which one he said) had Celiac's. Well, I wasn't suggesting that my son DID have Celiac's, but that he MAY be Gluten intolerant (HE IS). For those who really do have Celiac's and aren't of the "right" ethnicity, maybe that is why some Dr.'s aren't considering it. I have not had my son tested for Celiac's, so who knows, he may actually have it in addition to his autism. Some children w/ autism only have behavioral reactions to gluten. My son does have BIG behavioral reactions but he also has had diarrhea, which was better after going lactose free, but completely disappeared agter going gluten free as well. He didn't look like he was "starving" but he was pretty thin considering the amount of food he ate (all gluten and dairy, of course) and his enherited family traits (being heavy). He also gets red ears and runny nose after eating gluten (but not from dairy). I have found that I have gotten more sound advice from other parents, adults on the "net" than I ever got from the Dr.'s! One Dr. even told me there is absolutely no connection between behavior and allergies! He could come take care of my son after a big spaghetti supper! For those of you who can watch OPRAH, her show on 06/22 was about food and nutrition and the last 15 minutes was about allergies. One Dr. actually described some of the COMMON BEHAVIORAL PROBLEMS associated with food. --------------------------------------------------------------------------- Date: Fri, 23 Jun 1995 14:29:38 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: Skin rashes I'm not sure what DH stands for, but as I posted earlier my son, age 4 is on a gluten/casein free diet for his autism. My daughter, age 5, does not have autism, but has eeczema on her shins most of the time and sometimes on the tops of her shoulders, buttocks, thighs and elbows. Three different Dr.'s have mentioned that these are not the "typical" places a person has eczema. I have tried cortisone cream and, depsite all the "awful" warnings on the labe, it didn't even clear up her eczema. She does not appear to have any problems with diarrhea, but occasionaly has constipation. Also, my son had a bumpy, flesh colored rash on his lower legs which cleared up after soaking in Epsom salt. None of the Dr.'s I questioned about the rash seemed concerned about it or gave it a name. --------------------------------------------------------------------------- Date: Sun, 25 Jun 1995 12:07 From: Susan Richmond (Pooh100901@AOL.COM) Subject: Autism I am a therapist for an autistic child. His test results came back that he has a yeast infection(which almost 95% of autistic children do). He can not eat yeast or sugar because of that. He is currently on meds but trying to find "rewards" for him is very tough. I practice the Lovaas method with him and am in desperate needs for rewards. If anyone has any recipes or know of any "fun" foods that a child would like, that doesn't include sugar or yeast, please e-mail them to me at Pooh100901@AOL.com. Not only would you be helping me but you would being helping him as well. Thank-you in advance, Sue --------------------------------------------------------------------------- Date: Mon, 26 Jun 1995 10:04 From: Lisa S Lewis (LISAS@PUCC.PRINCETON.EDU) Subject: Re: Autism Sue, If you can find 100% vegetable glycerin (try the health food store) this will make an acceptable sugar substitute. It can be used to make cookies that you could break into small morsels for reinforcers. I recommend finding Gail Burton's anti-yeast cookbook (again look at a health food store that carries books) for recipes. There are many quickbreads (like muffins) that can be sweetened with this glycerine. My son was on this diet for several months...it was hard but we managed. Hisschool program isn't strictly Lovaas, but they do use reinforcers. We used salty reinforcers such as chips and popcorn. But I also made ok (not great) cupcakes, brownies and cookies. If you have access to the WWW check out my page on diets and autism at: http://www.princeton.edu/~lisas/gfpak.html LL --------------------------------------------------------------------------- Date: Tue, 27 Jun 1995 16:07 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: genetic/ethnic predisposition? I joined this list to get information on food for a gluten free diet. My son, Jordan, age 4, has autism. Children w/ autism do not (I've heard) test positive for classic celiac's disease. I wonder if this is assumed or if any child has been biopsied and it came back negative. My son reacts to eating gluten by having uncontrollable tantrums. He is non-compliant and inflexible. However, he also has had problems with diarrhea. At age 2 his Dr. said he was lactose intolerant and diarrhea was much improved after going lactose free. Diarrhea was still a frequent problem, though not as severe. When we started gluten free diet his bowel movements started to be NORMAL. When he accidentally ingests gluten (or we give in, which we DO NOT do anymore) he has, in addition to the beh. prob., red ears, unidentified rash (does not itch or burn) on legs increases, runny nose. He did not look like a starving child but was thin considering the amount of food he ate and family tendencies. I wonder if he would test positive for CD? I worry about diagnosis because the school and I agree on nothing where my son is concerned. I'm afraid the school won't take the diet seriously. One parent, whose son w/ autism is on the diet, KNOWS they are not strict about the diet at school and think "a little won't hurt him". If he has a diagnosis of CD and/or a letter from the Dr. they would be more likely to follow the diet. When I mentioned the diet to Dr. about 18 months ago he said people w/ CD are from certain ethnic backgrounds. I also wonder if I may have CD. I don't have the chronic intestinal complaints (I am 25 yrs. old) but do have occasional prob. w/ diarrhea and constipation. I have also read some people on the list who has "mental fuzziness and irrational anger" as side effects. Sometimes I have good reasons for the anger (like incompetent school personnel!). Any comments welcomed. JJChopson --------------------------------------------------------------------------- Date: Wed, 28 Jun 1995 22:36 From: David Taylor (DavidT@DBTAYLOR.DEMON.CO.UK) Subject: leaky gut-autism I have a 4 1/2 year old boy, Oliver, who is autistic but also has a number of related problems:- intermittent candida problems-we use Nystatin leaky gut as measured by a PEG test Iga reaction to gluten and casein low essential fatty acids-we use evening primrose oil low magnesium,vitamin B6,vitamin C,zinc etc-we use super nuthera well known on the autism list My main point is that I could see that the leaky gut could be the most significant problem.Oliver has been on gluten free diet (although not ultra strict) and milk free diet for about 15 months. Are there any products that can help fix a leaky gut and are there any scientific studies to back it up? Oliver is doing really well on an intensive home based therapy system (Lovaas for anyone who knows autism) but I'm sure there is still somethimg missing-I'd love to hear from anyone with any suggestons. dave Taylor To: cc: bcc: From: Bill Elkus Date: 09/20/95 12:11:46 PM Subject: Item number 2518, dated 95/06/28 22:26:49 -- ALL Date: Wed, 28 Jun 1995 22:26:49 GMT Reply-To: DavidT@dbtaylor.demon.co.uk From: David Taylor (DavidT@DBTAYLOR.DEMON.CO.UK) Subject: leaky gut-autism I'm very new to this list but I'm very optomistic that it will be very useful. I have a 4 1/2 year old boy,Oliver,who is autistic but also has a number of related problems:- intermittent candida problems-we use Nystatin leaky gut as measured by a PEG test Iga reaction to gluten and casein low essential fatty acids-we use evening primrose oil low magnesium,vitamin B6,vitamin C,zinc etc-we use super nuthera well known on the autism list My main point is that I could see that the leaky gut could be the most significant problem.Oliver has been on gluten free diet (although not ultra strict) and milk free diet for about 15 months. Are there any products that can help fix a leaky gut and are there any scientific studies to back it up? Oliver is doing really well on an intensive home based therapy system (Lovaas for anyone who knows autism) but I'm sure there is still somethimg missing-I'd love to hear from anyone with any suggestons. dave Taylor Item number 2576, dated 95/07/02 21:27:29 -- ALL Date: Sun, 2 Jul 1995 21:27:29 GMT From: David Taylor (DavidT@DBTAYLOR.DEMON.CO.UK) Subject: autism-diet We have a 4 1/2 year old boy,Oliver, who is autistic and also a very fussy eater. He has been on a reasonably gluten and milk free diet for about 15 months.It is not over strict though.He has problems with candida from time to time.We'd now like to be much stricter with his diet and would welcome suggestions.He has gluten free toast and ricecake for breakfast and chicken or fishfingers (batter removed) with chips for most of his other meals.He drinks bottled water or diluted apple juice. He isn't exactly fat but appears quite well. Any ideas? Thanks, Dave and Andriene Taylor Item number 2604, dated 95/07/05 20:22:28 -- ALL Date: Wed, 5 Jul 1995 20:22:28 -0400 From: Jennifer Chopson (JJChopson@AOL.COM) Subject: Re: observations My son, age 4, has been gluten - free (as far as we can tell, we're still learning to locate the "hidden" gluten) for about two months. He has had 3 or 4 mistakes that we know about. His reaction comes within 4 - 12 hours after ingesting the gluten. He has autism and is not suspected of having celiacs (though with the diarrhea and other syptoms I MIGHT have him checked for CD). His reactions are behavioral. JJChopson Item number 2726, dated 95/07/16 14:49:41 -- ALL Date: Sun, 16 Jul 1995 14:49:41 -0400 From: Don Wiss (donwiss@panic.com) Subject: Reichelt on Gluten, casein and behaviour The following is a letter from Dr. Reichelt that was written in response to some questions posted in a newsgroup. >can gluten intolerance cause a forboding feeling that there >is a'conspiracy' working against you or causes you >support, obsessiveness, or >lack of insight? Can it cause feelings of persecution, the sense that >things somehow pertain to you or your close friends and relatives? Can it >make someone display symptons of paranoid-type schizophrenia? From: K.L.Reichelt@rh.uio.no (Kalle Reichelt) Subject: Gluten, casein and behaviour Hi. It is of course very difficult to make follow the effect of gliadin, gluten and casein derived peptides and their specific effects on the brain. However, the fact that opioids from exogenous proteins can be isolated from patients (1,Reichelt et al submitted), and that other peptidesfound in urine and dialysis fluid from patients (2,3) also causes behavioural changes in animal models, makes it possible that paranoid ideation and persecutory feeling could well be human correlates of the behaviour changes noted in animals (2,3). We cannot do such experiments on humans although they have been carried out before the advent of ethical committees. Thus prof R Heath in New Orleans injected a serum prep on volunteering prisoners called tarexein. They definitely demonstrated schizoid behaviour. (I have seen the videos myself). We have effect on schizophrenics on diet (blind) (4) which agrees with some publications (5,6) but not with others. I think the negative experiments were run for too short an interval. A dietary casein and glutenfree diet would need 1/2 to one year to be certain. In autistic children wedo also find a clearcut effect of diet run over 4 years (1). However, if it is correct that you drink tons of coffee, this could in itself be the cause. This is because caffeine act as a CNS st agent causing higher arousal which again makes you more introverted. If the doses are very large borderline conditions may develop and the world by seeming strange causes paranoid ideation to explain the changed perception of the world. See Prof Eysencks many paperbacks on psychology. Amphetamine has the same effect (bad trips) in introverted persons. In Hyperkinetic children where the attention related CNS centres show lower activation, they go from extreme extroversion and become normalized. Treating epileptic children with the drugs available often causes a iatrogenic hyperactivity (ADD) syndrome because of increased CNS inhibition. This is a cl inical problem which is difficult but unavoidable. Ref: 1:Reichelt Kl et al (1991) Brain Dysfunct . 4:308-319. 2: Hole K et al (1979) Neuroscience 4:1883-1893. 3:Drysdale A et al (1982)Neuroscience 7:1567-1574 4:Reichelt KL et al (1990) J Ortomol Med5:223-239 5:Singh MM and Kay (1976) Science 191:401-402. 6:Vlissides DN et al (1986) Brit J psychiat 148:447-452(some cases, not all) Right now I do not have time for more references, but we can get back to that later. All the best 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 2780, dated 95/07/19 22:50:37 -- ALL Date: Wed, 19 Jul 1995 22:50:37 -0400 From: Diane Pusieski (DianeM2@AOL.COM) Subject: Undiagnosed Celiac & disabilitie I don't know if I have celiac or not, but a friend of mine suggested that it was possible. 3 years ago I developed irritable bowel syndrome due to an emotional crisis, in which at times I develop serious constipation and constant pain in my right side of my colon. I have only learned about the possibility of this and will talk with my doctor about it. The question I have is this: I also have two children: 1 with autism and slight mental retardation; and 1 with ADHD. Could all three of us be affected by this? I would like more information. Item number 2787, dated 95/07/20 09:41:46 -- ALL Date: Thu, 20 Jul 1995 09:41:46 EDT From: Michael Jones (mjones@digital.net) Subject: Reichelt: ear infections, allergy, autism & gluten On 16 Jul 1995, Don Wiss forwarded the following (excerpted here) from Jack Challem, Editor of The Nutrition Reporter (TM) newsletter: >Michael, I'm sure you'll hear a lot of opinions. But I'll point to you to a >specific journal citation that confirmed what people have been saying for >years. The fundamental cause of ear infections is allergy, which >causes fluid retention in the ear, which >creates a great breeding ground for bacteria. The >most common allergens for small children are milk and wheat. >Nsouli TM, "Role of food allergy in serous otitis media," Annals of Allergy, >September 1994;73:215-219. ------------------------------------------------------------ I showed this to Dr. Kalle Reichelt, who had the following to say (quoted with his permission): ------------------------------------------------------------ This is quite intersting because the IgA antibodies formed in the gut are transported to all mucous membranes in the body and may react with appropriate antigens. because intact antigens are taken up into the blood postprandially (1) and we have also demonstrated increased levels of IgA antibodies to gluten,gliadin and casein in some autistic patients (2,3); I can easily see a possible connection, where all mucosal membranes are irritated antibodies. References: 1: Husby S et al (1985) Scand J Immunol 22:83-92. 2: Reichelt Kl et al(1990) J Applied Nutr. 42:1-11 3: Reichelt KL et al (1994) Develop Brain Dysfunct.7:71-85 All the best 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 3221, dated 95/08/26 01:14:46 -- ALL Date: Sat, 26 Aug 1995 01:14:46 +0100 From: "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) Subject: Gluten withdrawal in young children with autism Many parents around the world have been experimenting with gluten and/or casein free diets for their children with autism and the vast majority have claimed benefits which are often substantial. Practical experience and theoretical considerations both suggest that the earlier the offending products are removed from the diet the better. Our group continues to be coy about promulgating information on this topic until the evidenceof effectiveness is conclusive. Also, I would hate to be sued. In spite of this, we are contacted on a daily basis by parents for advice on this matter. We have learned to insist (OK strongly recommend) that parents discuss their plans with their GP and, where appropriate, a nutritionalist of dietician to ensure adequate replacement of cereal and dairy produce. Diagnosis of autism does not usually occur until the child is at least 2 years old and more likely 4. It is unusual, therefore, for us to be contacted by a parent whose child is only 20 months old. She had heard about dietary intervention and wnted to give it a go. We warned her that this is not a game and to be prepared for "withdrawal symptoms". The boy had existed largely on "Weetabix" and milk and this was withdrawn from his diet. The results were, by all accounts dramatic. Normally we experience anxiety and clinginess and a few tears but this boy was absolutely distraught and cried and screemed almost solidly for a couple of days. At this point, the mother decided to give him back his Weetabix. The results were disastrous in that the screeming was hugely intensified and the child arched his back and generally went berserk. At this point he was hospitalised for a couple of days and is now back at home (eating his Weetabix). Naturally, we were alarmed at this tale and there are a number of plausible explanations ranging from pure coincidence to the fact that the child was very young and so did not have any of the biologically active, gluten derived, peptides stored in his tissue. Thus removal of the gluten led to a "Cold Turkey" type response which would not be seen in older children or adolescents. We are unaware of any other experiences with children as young as this but wondered if others on the list would like to comment. I appreciate that although there are links between coeliac and autistic conditions they are not the same. It may be, however, that others may have comments. In the meantime, we have decided that when dealing with very young children, we will suggest that the gluten be withdrawn in two stages about a week apart. I would welcome any comment on this. Paul Shattock Item number 3276, dated 95/08/30 11:37:26 -- ALL Date: Wed, 30 Aug 1995 11:37:26 -0400 From: "Michael W. Jones" (mjones@DDI.DIGITAL.NET) Subject: Request for volunteer to assist on autism and celiac There has recently been a lot of discussion on the AUTISM list (which is also run at the St Johns LISTSERV(R)) about gluten intolerance in autism. The listowners of the CELIAC list maintain a special package with edited versions of all relevant posts about autism which appeared on the CELIAC list (this file is the CEL-AUT PACKAGE). We are seeking a volunteer who is a parent of an autistic child on a GF/CF diet. The volunteer would be responsible for collecting all posts about gluten intolerance from the AUTISM list, and all posts about autism from the CELIAC list, and adding them into the CEL-AUT package. Updates would be added once a month by the volunteer. This volunteer would send a simple search command to the AUTISM and CELIAC LISTSERV(R) once a month in order to retrieve all posts about gluten intolerance and autism. The volunteer would then do some simple editing to remove duplicate information, combine everything into a single file and forward it to me for a final review and posting as a reference file on CELIAC. The Listowners have found that these summaries are a wonderful introduction to a subject for new subscribers (other parents), busy researchers, or medical professionals. If you have a knowledge of autism or an child with autism, some spare time and the interest to cut and paste, please email me privately at (mjones@digital.net). Michael Jones For the Celiac LISTSERV(R) Owners Item number 3315, dated 95/09/01 10:26:59 -- ALL Date: Fri, 1 Sep 1995 10:26:59 GMT From: Michael Jones (mjones@digital.net) Subject: Reichelt on behaviour and gluten I received the following 'guest post' from Dr. Reichelt this morning, in reply to some of the recent posts about behavioral changes due to gluten: Hi Classic works on autistic symptoms in coeliac disease have been published (1) and also depression (2). But of course not in all (is there ever something that applies to all?) It is extremely relevant that we find very high IgA antibodies against food proteins in Downs syndrome(3). The effect of food proteins are also manifest from our data on on diet and autism (4). Furthermore a series of neurological conditions have been related to gluten intolerance. Thus spinocerebellar degeneration, neurological symptoms, cerebellar syndromes and degeneration of the CNS have all been implicated(5-8). Gluten provocation in young children with coeliac disease can cause long lasting EEG (Electroencephalographic ) changes in spite of normal vitamin levels (9). In adults gluten intolerance, occipital calcifications and a parietal epilepsy have been found (10). Finally it is important that proteins which contain many eg. exorphin sequences such as gluten where there are 15 per molecule (11), even trace amounts may cause problems when the break down is decreased or intestinal uptake increased swamping even normal digestive capacity. Animal model of extreme relevance because monoamine changes are similar to those described in human coeliac patients by Hallert(2) is that carried out in Canada by Thibeault(12). Cats usually do not eat gluten. References: 1: Asperger H (1961) Die Psychopathologie des Coeliakiekranken Kindes.Ann Paediatr. 197:146-151. 2: Hallert C et al (1982) psychic disturbances in adult coeliac disease III.reduced central monoamine metabolism and signs of depression. Scand J Gastroenterol. 17: 25-28. 3: Reichelt Kl et al (1994) Increased levels of antibodies to food proteins in Downs syndrome. Acta Paediat Japon. 36: 489-492. 4:Reichelt Kl et al (1994)Nature and consequences of hyperpeptiduria amd bovine casomorphin found in autistic syndromes. Develop brain Dysfunct. 7:71-85. 5:Ward ME et al (1985) Celiac Disease and Spinocerebellar Degeneration with Normal Vitamin E status. Neurology 35:1199-1201. 6:Cooke WT et al (1966)Neurological disorders associated with adult coeliac disease .Brain 89: 683-722. 7: Finelli PF et al (1980) Adult coeliac disease presenting as cerebellar syndrome. neurology 30: 245-249. 8:Kinney HC et al (1982) Degeneration of the central nervous system associated with coeliac disease. J Neurol Sci 5: 9-22. 9:Paul KD et al (1985) EEG-Befunde bei Zoeliakikrnaken Kinderen in Abh{ngigheit der Ern{hrung. Z Klin med 40: 707-709. 10 : Gobbi G et al (1992) Coeliac disease, epilepsy and cerebral calcifications.Lancet 340:439-443. 11: Fukudome Si and Yoshikawa M (1991) Opioid peptides derived from wheat gluten: their isolation and characterization. FEBS Lett 296: 107-111. 12: Thibault L et al (1988) Changes in serum amino acids content and dopamine-beta-hydroxylase and brain neurotransmitter interaction in cats fed casein with and without gluten . J Clin Biochem Nutr.4: 209-221. 13:Zagon IS and McLaughlin PJ (1987) Endogenous opioid systems regulate mcell proliferation in the developing rat brain. Brain res 412:68-72 Conclusion: Because gluten can cause neurological problems it is not strange at all that it may also give behavioural problems.The opposite would be improbable. We believe (4) that the mediators of these problems are peptides and specifically exorphins that do have inhibition of nerve development as one of their effects (13) 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 3320, dated 95/09/01 11:45:00 -- ALL Date: Fri, 1 Sep 1995 11:45:00 EST From: "Kevin J. McMahon" (0003557428@MCIMAIL.COM) Subject: DEVELOPMENTAL DELAY REGISTRY (DDR) Posted by Kevin J. McMahon for the DDR. I am posting this notice for the DDR. If you wish to contact them directly use the contact number in the message. If you wish to contact me directly send mail to 3557428@mcimail.com as I may remain a subscriber on this list. DEVELOPMENTAL DELAY REGISTRY (DDR) ---------------------------------- The DDR is a year-old non-profit organization formed to help meet the needs of parents and professionals working with children who have delays in motor, sensory motor, language, and social emotional areas, including attention deficits. Recent DDR activities include a survey seeking links between developmental delays and antibiotic use and a March 1995 conference titled "After the Diagnosis, Then What?". The mission of the DDR is to find healthy options for those supporting children with developmental delays and to prevent more children from being affected. We do this through our quarterly newsletter, periodic one and two day conferences and by selling materials that are compatible with our philosophy. Membership is $25 for students and retirees, $40 for families, $60 for professionals, $125 for organizations, and $100+ for individual sponsors. The DDR currently has over 1400 families registered. The dates of our next conferences are October 20th in Pennsylvania (co-sponsored by Special Needs Agency, a division of the Glatfelter Insurance Group and Allen Natural Foods), December 2nd in Northern Virginia, February 23-25, 1996 in San Diego, and March 15-17 in Stamford, CT. We are in the process of lining up speakers in the areas of immune system functioning, nutrition, occupational therapy, auditory training, vision, homeopathy, chiropractic kinesiology, osteopathy, and chemical sensitivity among other things. About half of the speakers will be the same as the conference in Maryland last March. The rest will be new. Audiotapes and copies of the conference manual from the March conference are still available. The DDR can now be reached at 7801 Norfolk Ave. #102, Bethesda, MD 20814 Telephone: 301-652-2263 Fax: 301-907-2427. Board of Directors: Kelly Dorfman, M.S., L.N., L.D. - President Nancy Lewis, O.D. - Vice President Sheri Present, OTR-L - Secretary Wrenn Reynolds - Treasurer Patricia S. Lemer, M.Ed., NCC - Executive Director Professional Advisory Board: Stephen Edelson, Ph.D. Alan R. Gaby, M.D. Michael J. Goldberg, M.D. J.N. Gordon, M.D., F.A.A.P. Celia Hinrichs, O.D. Richard E. Layton, M.D. Bernard Rimland, Ph.D. Michael Schmidt, B.S., CCN William R. Spear Serena Wieder, Ph.D. SURVEY SHOWS LINK BETWEEN ANTIBIOTICS AND DEVELOPMENTAL DELAYS IN CHILDREN A new, nationwide survey of nearly 700 children is showing a disturbing link between children with developmental delays and the amount of antibiotics they have taken. The survey, which included youngsters between the ages of one year and 12 years found that those who have taken more than 20 cycles of antibiotics in their lifetime are over 50% more likely to suffer developmental delays. Children who have had three or fewer found of antibiotics were half as likely to become developmentally delayed. The 9 month survey began in June 1994 by the Developmental Delay Registry, a multi-national database of 800 families, most of whom have children with developmental delays. The survey's other findings: o Nearly 75% of the delayed children were reported to be developing normally in their first year of life. o Developmentally delayed children were 37% more likely to have had 3 or more ear infections than unaffected children. o Affected children were nearly four times as likely to have had negative reactions to immunizations. o Affected children were twice as likely to have had ear tubes than unaffected children. Kelly Dorfman, a licensed nutritionist and co-founder of the Developmental Delay Registry cautions, "Parents should be put on notice that utilizing antibiotics prophylactically could jeopardize their children's development. We believe alternative approaches to treating ear infections should be considered." The incidence of children in the United States with developmental, behavioral and mental disorders is dramatically increasing. Conservative estimates show that in the last four years the number of children under age 18 with these disorders has grown from 4.8 million to 7.5 million. Included in these pervasive developmental disorders are autism, speech and language problems and multi-system developmental disorders. Symptoms range from skin irritations and sleep disturbances to repetitive behavior and loss of language. According to Patricia Lemer, a National Certified Counselor and co-founder of the Developmental Delay Registry, "The difference in the occurrence of developmental delays between children who take high doses of antibiotics and those who don't is astounding. We are urging the medical research community to conduct scientific, longitudinal studies to help us find out what is going on here."
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