It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Message Board

Posted by . on June 24, 2000 at 20:00:52:

copied from
Samuel's Story (sent 6/8/00)
(age 17 months)
by Teresa Summers

We went gfcf, cold-turkey, 8 days ago, and here are the changes:

more stimming, toe walking, and tantruming
Also, a re-attachment to the pacifier

Now for the good things....

Sam has slept through the night for 6 of 7 nights. This is more times than in his WHOLE LIFE!

His eczema, which he's had since 4-6 months of age, has lightened a great deal.....was bright red, now pale pink.

His bowel movements have gone from black pellets every 2-4 days, to one mushy, brown stool, at 1:00pm, like clockwork!

And, for the REALLY good stuff.....

He's POINTING, a lot! Pointing to show interest, pointing to identify objects when we name them, and pointing to request! (Sam did not point before the diet)

He's IMITATING, a lot! Imitating animal sounds, gestures, WORDS, etc.

He's showing APPROPRIATE TOY PLAY, with no prompting. This is a boy who, when given a toy, would undoubtedly find a way to stim with it. He is now getting out his blocks, building towers, running toy cars across the floor instead of turning them over & spinning wheels, etc.

Oh, and he's pointing to body parts correctly, his and ours. This is a new skill.

This evening I'll be making another trip to the natural foods market and working toward eliminating the trace elements that may have been sneaking through in the past week!

Go Sam, GO!

Connor's Story (Sent 6/8/00)
Age 4 yrs. old
(by Susan Devlin)

Connor Devlin age 4 has been gfcf for 5 weeks.

My son Connor was evaluated by the local school system in February and found to have a developmental delay in speech and social development as well as having sensory integration problems. My doctor suggested I have him evaluated for autism, and I am still on the waiting list at the university child development center.

I found out about the gfcf diet online and I have a friend with an autistic child who has been helped, so I decided not to wait for a diagnosis, but to try the diet right away. In two weeks I saw a dramatic improvement in my child. He began talking much more, noticing things in his environment and pointing them out to me. He started asking questions, even to strangers. He will now answer my questions, or try to, where before he would usually ignore a question or get angry and frustrated when asked.

He started sitting with other children in circle time--something he had never done before. His sensory problems have diminished somewhat. He will swing in a toddler swing, and he will let me comb his hair. Before the diet, Connor liked the little boy next door, but would often choose to ignore him when he came over. Now he will actively play with the boy, and they are becoming friends.

In February Connor was having numerous daytime potty accidents and wore diapers at night. He is now totally potty trained and rarely has a nighttime accident. In a short course of OT therapy he has learned to use scissors and is working on pencil grip. He rarely screams now, when this was common before. He is more cooperative and will often follow verbal directions. He reached all of his speech therapy goals in 6 weeks, and will have to have higher goals in the fall.

I am absolutely thrilled with the progress he has made, most of it in the last 5 weeks since he started the diet. I sincerely doubt that any doctor will diagnose him as autistic.

Brents's Story (Sent 6/8/00)
(age 3 yrs. old)

My son Brent (just turned 3) has only been on the diet for a month now. A
wonderful teacher at his school passed the Parent's Magazine article to me as he met the criteria (he had totally self-limited to wheat and dairy products). We have had a few setbacks as we are still in the learning process - but Brent has doubled his vocabulary already. He is more responsive and hyperactivity has rapidly declined. Friends and family are noticing now. He is imitating me and engaging in some turn-taking songs and games. We are so thrilled and eager to share his further success in a few months!! I am passing on this information to anyone I know who has been touched by autism. This has been a lifesaver for us.

Erica's Story
(age 6 years old)
By Brenda Chrusciaki

A friend sent me an article from the February issue of Parent Magazine.
The article was about the GFCF Diet and it has changed my daughter's life.

My daughter appeared to be developing normally until the age of two, when she would not talk. Sometimes she would say a word or two but would never repeat it when asked. Then we noticed she did not seen to react to pain. She later started to look at magazines repeatedly, put her hands in her mouth, or wring her hands. But she would get upset when you asked her to stop the behavior. She would make limited eye contact. She was usually a very happy little girl, she was aware of what was going on around her but something seemed to hold her back from doing what everyone else was doing.

We took her to a neurologist, a geneticist, a psychologist, a psychiatrist, had speech and occupation evaluations, hearing test, EEG, Genetic testing for chromosome abnormalities all of the results came back normal. All of the testing did not show anything wrong with Erica but no one could tell us why Erica was behaving the way she did.

The end of February I received the article and since Erica was starting her school break that week it seemed like a good time to start the diet. For the first few days she seemed to be hungry all the time and could not get enough to eat. I eliminated both the gluten and casein from her diet at the same time. In the three weeks since she has been on the diet her senses seemed to come alive. She shivers when she is cold, she feels the need to go potty. She is making more eye contact, She is more receptive to the teachers at school helping her do things. Cries when she has fallen down. Obeying the first time told. She has even said a few words for me.

Both Erica's childcare and teacher have been very supportive in putting her on this diet. The teacher even said she is very interested in how Erica reacts so she can tell the other parents of the students in Erica's special Education classes to see if it will help some of the other children.

This is the first time I have had hope that something could really help Erica.

Mathew's Story
(age 2 years old)
by Samantha Glaysher

Our son Mathew was diagnosed autistic PDD last July. He has made a complete recovery through the GFCF Diet alone. All testing was done through Paul Shattock at Sunderland University. (He is truly an inspiration.) I only wish, for the sake of parents new to all this, that information was more readily available when visiting physicians, etc.
How many children go undiagnosed and not helped - without any dietary intervention........?

Kindest regards,
Samantha Glaysher

Nicholas' Story
(age 2 years old)
by Cindi K. Johnson, MD, FACS

Our son, Nicholas is now 2 years old. By 12 months, we knew something was wrong. He would not respond to verbal stimuli, had no speech at all, and when a balloon popped in his face on two separate occasions, he did not notice at all. We thought perhaps he was deaf, but he would run in from another room when he heard his favorite video music come on.

As my husband and I are both physicians, we suspected a problem and autism crept into our thoughts though we wanted to ignore it. By 18 months, when we looked at videos of our other son singing the ABC song and following complex commands, and doing all the animal noises, we knew we could not attribute the difference to sibling differences as we had been recommended to do. We took him back to his pediatrician who at that time confirmed our fears. I got on the internet that night looking for immediate information and ran across a mention of a special diet. Our doctor's nurse coincidentally mentioned a family in our area trying this special diet. Within three days I decided to start Nicholas on the gfcf diet. I could see no down side: he could get enough calories, nutrients and fat through the diet, it was free, and there were no unusual things to add or eat. My husband went on a trip for days starting the day of the new diet. On his return, he noticed that Nicholas was brighter and seemed more "with it."

Within weeks, he made 11 new sounds of speech, ie. b, d, k, g, h ,m ,n, p, r, t, y! ! It was like watching a fog lift off someone as he became more and more aware of his environment and interacting within it. It was as though he was slowly awakening. He is now just over 2. His eye contact has improved tremendously, he now has around 22 words and his expressive language is improving. His receptive language is still lagging severely. His dangerous climbing habits have significantly decreased. He is very happy and smiles easily which we feel very thankful for. He does not have a lot of sensory issues. We know of 4 other families in our area who have children on this diet and have noticed positive results.

As a physician, I know that this is the only change we made to his diet/environment at that time and we witnessed a marvelous change. As a parent, I am thankful to have this diet as a basis on which the therapy he is receiving can build new skills. With this many positive anecdotal reports of improvement, there has got to be a true scientific basis for this improvement. I am hopeful that, with time, the medical community can come to see this diet in much the same way that we now recognize that diabetic individuals must alter their eating behaviors to maintain their optimal health.

Best of luck to each of you,
Cindi K. Johnson, MD, FACS

PS Please see the Parents magazine Feb. 2000 issue for a great article on this diet.

Perry's Story
(age 12 years old)
by Robin

My name is Robin, I have a 12 year old son named Perry who is autistic. I start a Ph.D. program in nutrition next month and I was very surprised to find that through all my studies they never mentioned anything about possible food allergies being linked to autism and other learning disabilities. So, when I came across the GFCF website this summer I was really excited and wanted to try it.

This fall I decided to homeschool my son, who was about to enter middle school- a place I was very reluctant to send him. With him being home I knew that I would be able to monitor what he ate, etc.

Here's what happened:

The first few days of the diet, I took him off dairy (mainly milk), I was able to see changes in him almost immediately. He stopped running and skipping around and laughing at imaginary things. Over the next few weeks, I experimented with the milk and came to the conclusion he could no longer have dairy. He now drinks soymilk. I just bought a soymilk machine because it was getting expensive to buy soymilk at the store. This is our 4th month being dairy free and third week being wheat free. By observing my son carefully I have been able to single out other food sensitivities. I know this is long but I wanted to tell other parents who are starting out, to hang in there. Some think the program is expensive to maintain, and my advice to you would be to go back to the basics when it comes to preparing meals for your child.

The GFCF diet has worked for my son, but don't stop there, if you know you have been sticking to the diet and all of a sudden you see a behavior return, it could be an allergy to another food or substance he/she recently ate that isn't on the forbidden food list.

I asked my son to write a paragraph about places in the world he'd like to visit.

Here's what he wrote:
"If I could travel all over the world I would go to Honduras, Venezuela, Mauritania, and Morocco. Those four places will be great and beautiful. Morocco is my favorite place because it is in Africa and Africa is my favorite continent". He even drew a map from our city to each country.

This may not be an achievement for some reading his paragraph, but for us, his paragraph is "great and it is beautiful". A few months ago he couldn't even write a sentence that made sense, now he is doing fifth grade math, and showing real feelings like, anger, genuine happiness, laughing at crazy cartoons, being able to read a book and being able to tell you what's happening in the story.

Just remember you are your child's advocate, if it comes down to an extreme like temporarily giving him/her beans, rice, green beans, and soymilk every night to get your child's meals to a basic level so you can weed out the allergy culprits and to give him/her a chance at a "normal" life, go for it.

Lots of success
(email: [email protected])

Sam's Story
(age 4 years old)
by Renee

My son Sam, age 4 years old, has been on the diet for 2 1/2 weeks. His diapers are no longer a nightmare, he goes to sleep and sleeps better at night, his vocabulary has broadened like crazy, he's more cooperative, no longer walks on his toes, and seems happier and calmer. He's Here now, instead of on Planet Sammy. The diet has made a world of difference.

Eric's Story
(age 3 1/2 years old)
by Jacquie vonHunnius

At Christmas, a member of another list I'm on steered me to the new "Autism Treatment Evaluation Checklist" at the ARI (Autism Research Institute) website. You fill in the survey, and are given a "score" that is your child's baseline, which you can use to evaluate interventions and therapies upon subsequent evaluations. My son's score in December
was 105. (the higher the score, the more severe the autism, but there's no way to know what 105 means in the grand scheme of things......) A week later, my husband and I were playing with Eric one night, and he was *talking to us*! We just sat there staring at each other, jaws wide open - we sat on the floor of the hallway with Eric for 2 hours, terrified to move for fear we'd break the spell. After much debate over what had been different enough to make this change, it dawned on us he'd not had any milk ( a drink he was *addicted* to) for 2 days. I remembered the GFCF website, having found it on my many searched for information on autism, and logged on that evening. Started the diet the next day. Today, I went back to the ATEC, on a whim, to see if the diet *had* made a difference on the ATEC, I mean I thought it had, but how can I really know for certain when I'm with him 24/7? Change can be so gradual....HIS SCORE IS 76!!!!!!!! A month and a half on the GFCF diet, and his score dropped 29 points! I'd call that treatment effective.

Thanks for sharing my excitement,
[email protected]

Paul's Story
(age 6 1/4 years old)
by Jan

Paul is now 6 1/4. He was 5 1/2 when we started him on the gluten free diet. I had heard about the diet two years before at my attendance at the first AiA conference in the UK but I had not committed to the diet then. We firstly took out fruits as per Dr. Rosemary Waring's investigations and he did improve very slightly but this may well have also been a result of change due to age. We put off the GF diet until I attended the second AiA conference and found a company that does fresh GF bread in the UK. Paul's main diet was and is bread so not being able to get a bread he would eat made it impossible to go on the diet. We started Paul in April and had a very negative response. He went dramatically backwards and the teachers in his special needs unit called me in to find out what was wrong with him as he deteriorated so badly. We persevered as we had read it could take 6 months to get the gluten out of his diet. At the beginning of August he appeared to be coming out of a fog. He slowly improved over the next couple of weeks and then by September we noticed a marked improvement. Paul has now started to write imaginative stories at school ; asking loads of why questions and understanding the answers and he has become just a very fun loving child. We have been very pleased with his response.

Austin's Story
(age 3 1/2 years old)
by Christine

Austin is 3 1/2, was diagnosed May 99, just before his 3rd birthday on June 18. We have been gluten free since April 99. Just over 6 months ago, my son received a diagnosis of High Functioning Autism. At the time of evaluation, he was about to turn 3. He had the speech of a 2 year old (was given 24 months speech) did not know his name, was unable to identify himself in a mirror, and had poor eye contact. He was excessively hyperactive, frequently injuring himself and did not feel pain. He had signs from birth, but upon starting solid foods, he began to have sleeping problems, eczema on his face, wrists and stomach, chronic diarrhea and frequent bouts of spitting up food and formula. He was also a victim of many ear infections and he became immune to the antibiotics they were giving him.

I cannot remember if the MMR shot at 15 months had any further effects. However, it was near this time that he began to have a series of "night terrors" and it was also this time that we began to feel that his behavior deteriorated. Not responding to our words or his name, dangerous acts like scaling up a ladder to the roof in seconds or climbing bookshelves and jumping off. As he neared his 3rd birthday and his speech was still not understandable and he had very few words, I became concerned.

It was at that time I had access to the internet. I read a paper by Ron Hogan regarding links between gluten and hyperactivity. I decided to do an elimination diet to determine what foods were affecting my son. The results made history in my family. First allergenic food to be discovered was almond meal (almonds) in a rice bread. Regular hive inducing allergy. Second food was gluten. The day we reintroduced wheat to my son, my husband immediately said "take him back off that stuff now" because my son was glued to the ceiling. The third allergenic food was apples and apple juice. Finally, we had to really watch and record his food because the last food and the most aggression causing food was nitrates/nitrites found in most pork products.

After removing all these foods it was about 1 week later that my son said his first 2 word sentence. He said "I sit" also the first use of pronouns. He was given the diagnosis actually about two weeks after the diet. His pediatrician even noticed the difference. Things have gone so fast that it makes my head spin thinking about it. He was in a TEACCH program for a few months, but then we moved. He was placed in a Communication Delay class in our new town. We made our own OT at home by the use of trampoline, climbing towers, mini-air jumper, fine motor skill work, computer games and so forth.

I sit here now with a son who is being moved into a regular preschool room with so few behaviors that he fits in fine. His social skills are weak, I'd place him close to 2 1/2 but it's a far cry from 6 months ago being given social skills of 18 months or less. He was re-evaluated by the school system just a week ago and he had age appropriate or higher skills for all areas of testing. He has full language use, age appropriate and fully understandable, and appropriate eye contact.

We had a gluten challenge, under the supervision of a doctor, back in September 99. He underwent colonoscopy looking for celiac disease, which he does not have. While on this challenge, he regressed in receptive language severely, ended up in ER with 6 stitches in his forehead from diving off our couch into a tile step, vomited, had horrible diarrhea again and was back to not eating any foods except bread products. It was a nightmare and I will not do that again.

We have not taken casein out of his diet yet. He was on a limited dairy intake up until a month ago. We placed him back on regular milk and the challenge is still up in the air. I am more open to being casein free now, I have seen some regression and so has his teacher. I think before that he was not reacting to milk, but after being "clean" for 6 months, I suspect he is becoming sensitive to it. What has helped to make this transition work for us, is that our entire family is Gluten free. It's not at all a bad thing, and we all enjoy the foods we eat. I've had to learn a new way of cooking, but nothing too difficult. And I will say that my 17 month old son who has not had his MMR shot and is gluten free and also dairy limited (only yogurt) has not had a single ear infection, shows no signs of autism or delay, sleeps beautifully and is healthy as a horse. I have seen first handedly the success of a diet. The only signs we can find today are his lack of danger awareness (although he feels pain now), his inability to read facial and vocal cues, and he is socially awkward, but he likes to be around kids his age.

Kevin's Story
(age 5 years old)
by Gerry Magee

I am writing to tell you about a success story I had with my son Kevin. Kevin was born in 1995 and was a normal developing child until after his first birthday. During his first year of life Kevin suffered numerous ear infection, more than I'd like to remember. Many ear infections meant many antibiotics. After Kevin's first birthday we began to notice he wasn't a normal developing child anymore. He became very irritable, had temper tantrums he was walking on his toes, the little language he had began to decrease he was in his own world and worst of all he was very unhappy. We had him evaluated when he was 15 months and that's when he began getting home based therapy. I fell into great hands when all this happened and I met an occupational therapist that would change our lives. She suggested to me that I take Kevin off wheat and dairy {at 21 months} and I did. From that point on Kevin has progressed to a normal functioning 4 1/2 year old HAPPY boy. Back then things looked really bad and I can't believe how far he's come, after hundreds of hours of therapy, auditory integration twice, and special ed school and MOST OF ALL a Gluten Free Casein Free diet he can now attend school at a local pre K with 18 kids in the class and he hasn't missed a beat. If there is anyone out there that could be the poster boy for GFCF Diets it's Kevin. Please try it, it does work and the success of the child depends on how determined the parents are. **Kevin was originally wheat free and 1 year later I went a step further to remove Gluten and added nutritional supplements. Kevin was diagnosed with PDD-NOS when he was 23 months. He is living proof that you can fully recover.**

Good Luck, it's never too late!!!!!

"Sister Fights For Autistic Brother"
Tuesday, January 18, 2000
Written by James A. Merolla
Massachusetts Sun Chronicle

Beverly Horne still keeps fistfuls of her ripped-out hair in plastic bags in her closet as a reminder. Her hair is cropped close to the skull now, just in case her brother Ed reverses his recuperating form and tries to attack her again. She doesn't want to leave him many long locks to tear off. Horne's younger brother, now 41, was diagnosed with autism in 1961, when very little was known about the condition, except that it was "psychiatric," "incurable," and "life-long," leaving parents with little or no hope for their child's future.

" I remembered my mother, a registered nurse, crying when I arrived home from third grade one afternoon," Horne says. "A psychiatrist had told her it was probably her fault that my brother had autism, according to the `refrigerator parent' theory of Bruno Bettelheim, a lauded psychologist." That dispelled theory -- once popular and painfully wrong in the 1950s -- purported that autistic children withdrew from cold, aloof mothers into their own psychotic worlds. The theory held sway until the 1960s when autism became linked to medical causes. "My mother was as warm as you can possibly be," Horne says. "You couldn't be more nurturing."

Horne also still remembers the neighborhood children who made fun of her brother because he was so different. "I remembered my fear when he would scream or have tantrums for what seemed like no reason and my anger and embarrassment when he did this in public," she says. Ed Horne lived in group homes from the age of 12 when his mother was terminally ill until early 1996 when Horne moved him home to live with her. Staff at his group home threatened to refuse to work with him unless Horne agreed to increase dosages of psychiatric medication for his behavior that had become assaultive recently. "My brother is not prone to violence unless in pain, so I moved him home with me while I searched for medical answers," said Horne, who left a thriving career as a WPRO radio reporter in Providence to be come an expressive therapist, helping wounded souls.

After weeks of "normal" test results, exploratory surgery on Ed found a non-functioning large intestine that had to be removed. Ed Horne almost died from internal bleeding and had a second major surgery a day later. "As I sat with him during the 30 days he stayed in the hospital, holding his hand and encouraging him, I made a promise to God that if my brother lived, I would do all I could to help him have a better life," Horne said. "Someone had once told me that Grace was God's way of giving people a second chance." When Ed Horne was discharged from the hospital, Beverly Horne moved him home to Colburn Street permanently, attempting to care for him, but he was still assaulting her, screaming and pulling out her hair in fistfuls several times a week.

He couldn't sleep through the night. Yet all tests by specialists came back "normal." Horne sought out every test imaginable. All normal. It was two years before she found a neurologist who had read research indicating most children with autism have bowel problems linked to food intolerance and/or Candida yeast overgrowth in the intestinal tract. The doctor tested Ed Horne for this, since he had a history of bowel problems most of his life. It was a simple blood test. "I leapt at the chance," said his sister. Ed's blood was loaded with yeast that had compromised his remaining intestine, causing all kinds of allergies and digestion/food absorption problems.

He also had severe food intolerance to the protein in dairy (casein) and the protein in wheat (gluten) as well as to eggs, fish, soy, citrus and bananas. Within three days of removing dairy products from Ed's diet, he was able to sleep through the night. He has not assaulted his sister in nearly two years. He continues to make steady progress on a restricted diet with supplements of key vitamins and amino acids that he was lacking. "He is much calmer," said Girard Cusson, Ed's supervisor at the Halcyon Center in North Attleboro. "He is more comfortable because the pain and the discomfort is gone. It (the change in diet) has done wonders with him."

Ed performs a variety of jobs procured through the Halcyon Center, including sorting, collating papers, shredding them, and placing manufactured items into their appropriate boxes. "His fine motor skills are phenomenal," his sister says. "He can shuffle cards faster than the eye can follow. And he makes the bed, helps with the laundry, and sets the table. He is Felix Unger, very neat. He does more than a lot of my girlfriends' husbands. They say `Hey, send Ed over.'

" Ed still has autism, of course, but Horne says her brother's quality of life has improved "500 percent." His eye contact is normal now. He initiates conversations and is more able to make his needs known. He is less compulsive. Co-workers, staff and neighbors have all noticed the progress. He sings and laughs often, they say, because he is free of the daily pain that plagued him every time he ate. "It's like he's there now. I was seeing my brother. He was in there all the time," Horne adds. "My admiration of my brother goes beyond words," Horne says. "I saw the intense suffering he endured during the two years after his surgery, suffering that was often misunderstood as `behavioral' when his behavior was the only way he could express his pain.

He is still a sweet, gentle person who sincerely likes people." Since the diet change, Ed now naturally waves good-bye, something he could never do before in his life. Horne has since attended several conferences on autism that focuses on biological treatment approaches. Her own research has been exhausting. She has discovered that more and more parents are pushing for medical answers to their children's behaviors. "These mothers and fathers are strong people. They have to be," Horne says. "They are true advocates for their children." Horne says children with autism have been misunderstood for years, as has the cause of the condition.

Stories of crying through the night, recurrent ear and sinus infections, repeated antibiotic treatments, bowel problems, screaming, tantrums, sleep disturbances and aggression are common among children with autism. In general, most doctors do not look at possible medical causes because most have been taught that autism is a "psychiatric" illness. The following viewpoint is typical of their skepticism. "At this point, there is no scientific study documenting the improving relationship in autistic behavior, due to dietary changes or restrictions. It is all anecdotal," said Dr. Helen Tager-Flusberg, professor of psychology at the University of Massachusetts in Boston who is an autistic researcher. "No scientific evidence. I keep it (any reports of progress) in the realm of clinical anecdote." Horne hopes to change this view.

"There are many causes of autism. It is partially genetic, but there is usually a trigger that brings it on and retards normal development," Horne says. "No one is born autistic." New research is showing that autism is very much linked to medical conditions that cause the other abhorrent behaviors, and that non-invasive dietary and nutritional treatments can help conditions. "I think, God, it could be so much worse," Horne says. As her brother Ed waves good-bye and goes to work, she adds, "There's so much hope."
e-mail her at [email protected]

Follow Ups

All times are GMT -7. The time now is 12:49 PM.

Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!