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Tribute to Elaine Gottschall

Elaine Gloria Gottshcall passed away in September of 2005, at the age of 84. She is greatly missed by all of us in the SCD community. Her work brought her close to many of us. We carry it on with great devotion as the battle for intestinal health continues to advance.

The following articles are by two of the countless volunteers in "Elaine's Army." The first article was written before Elaine joined the movement to introduce SCD to the autism community; the article below it was written especially about her work with autism.

Elaine worked literally day and night with the founders of the ASD/SCD to help parents and their children. She shared both her knowledge and love with all of us.

The story of Elaine Gottschall

Being a mother is seldom easy, We mothers, have time and again been compelled to act with heroism and self-sacrifice for the sake of our children. In our determination to rise to a challenge and overcome it, we sometimes reach beyond all expectations; revealing hidden talents that bring blessings to others in ways we never would have imagined. Though we set out to save a child, in the process find ourselves changing the world.

Young Elaine Gottschall harbored no lofty ambitions of changing the world. Back in the 1950s living with her husband Herb and two small daughters in suburban New Jersey, she considered herself and average American housewife - "your typical 'Leave it to Beaver' mom," as she reminisces today. She thrived in her role as wife and mother, content to lead a quiet, "normal" family life in blissful obscurity.

Then calamity struck. Elaine and Herb's four-year-old daughter Judy became dreadfully ill. Diagnosed with severe ulcerative colitis, she suffered acute, chronic intestinal distress and bleeding that was unresponsive to standard medical therapy. Despite Elaine's frantic attempts to find something, anything, that Judy's system could tolerate, no food would nourish her - instead it would rapidly pass right through, almost completely unabsorbed. Yet the doctor insisted that food had nothing whatsoever to do with her illness. As the sickness and malnutrition took their toll, the little girl stopped growing, and her sleep was disturbed by frightening episodes of delirium. Frustrated by the failure of one medication after another to stem the relentless course of the disease, Judy's doctor gave Elaine and Herb an ultimatum; either consent to surgery to remove their daughter's colon and attach an external bag for the collection of waste, or watch her slip into further debilitation, even death.

Overcome with helplessness and despair, Elaine broke down sobbing. Incredibly, instead of attempting to comfort the anguished mother, the doctor pointed an accusing finger at her and exclaimed, "What are you crying about? You have done this to her!" That humiliating incident left lasting scars, but it was to become Elaine Gottschall's defining moment.

Refusing to accept one doctor's opinion, Elaine and Herb desperately inquired of specialist after specialist, hoping to find one who would offer a glimmer of hope and a different approach. Yet, no matter where they turned, they were handed the same ultimatum: if the standard arsenal of drugs cannot keep the symptoms under control, surgery is the only alternative. (It was also reiterated that - despite the fact that this disease primarily involved the very organs that digested and absorbed Judy's food - the type of food she ate was irrelevant.)

Just when they had become almost resigned to their fate, a chance encounter between two friends led to Elaine being given the name of then -92 - year old Sidney V. Haas, MD, in New York City. Dr. Haas had developed his nutritional approach to intestinal healing over a long, illustrious career, and wrote a textbook, which could be found in nearly every medical library in the world. His colleagues, however - unschooled in nutrition and dismissive of its importance in maintaining health - had abandoned his work in pursuit of new versions of the same standard drugs and of increasingly complex surgical procedures. Though Herb couldn't bear to see Judy undergo even one more painful diagnostic procedure - and their doctor ridiculed Dr. Haas and his methods as outdated relics of another era - Elaine was determined to hear what the kindly old doctor had to say.

After carefully examining Judy, Dr. Haas asked Elaine simply: "What has this child been eating?" No doctor had ever asked her that question before. He then instructed Elaine in how to implement his simple nutritional approach. Within ten days of starting the regimen, the child's neurological problems diminished. Within a few months, her intestinal symptoms began to improve and she started growing again, making up for lost time. Within two years, she was symptom-free

By this time, Dr. Haas had passed away. Elaine feared that, unless someone acted to carry on his legacy, his simple but effective remedy for digestive maladies would die with him, depriving other patients of the chance to stop suffering needlessly and achieve true intestinal health. She visited a medical library and poured over journals, soon discovering that Dr. Haas's approach was well supported by sound scientific evidence. At Herb's urging that she "find out what is going on," she entered the halls of academia and the research laboratory at the age of 47, and earned degrees in biology, nutritional biochemistry, and cellular biology.

As her years of research wore one, Elaine began to experience a gnawing sense of disillusionment - fueled in part by her fellow researchers, failure to share her interest in integrating all of the evidence for the effects of food on intestinal health and translating it into clinical practice. She despaired of all her hard work ever being channeled into helping real people who were suffering - people whose doctors might never recommend Dr. Haas's approach. Elaine came perilously close to giving up.but Herb refused to let her quit. He convinced her that the only way to get Dr. Haas's message out to those who needed it most would be to begin private consulting.and eventually to self-publish a book and make it accessible to the lay reader.

...And that is how "Breaking the Vicious Cycle; Intestinal Health through Diet" was born.

Now in its eighth printing, "Breaking the Vicious Cycle: has been translated into several languages, and enjoys a worldwide following. Each day, countless individuals - suffering from (or caring for a loved one who suffers from) Crohn's disease, ulcerative colitis, IBS, celiac, diverticulitis, and other ailments rooted in the digestive tract (even autism and cystic fibrosis) consult Elaine by phone, fax, and email. She unselfishly devotes much of her time, free of charge, to helping these people- patiently answering the same questions over and over, or pondering new ones?. Counseling, encouraging, sharing laughter with, and yes, "mothering" her vast "extended family" of intestinal-health devotees. And what a diverse family it is: including people from all walks of life, of nearly every nationality and religious faith.

It's been quite a journey for Elaine Gottschall. Never in her wildest dreams could she have anticipated the many lives that would be enriched by her knowledge and selfless dedication to helping others. She truly is changing the world?. and it all began with a child.

All Her Children

Jamie is talking to her doll. Matthew's mother reads a glowing report from his teacher and Katie is hugging her little sister. Nothing unusual except that these children have been diagnosed with varying levels of autism and until now, many exhausted parents had given up hope of experiencing simple things most moms and dads take for granted.

Elaine Gottschall, a mother and grandmother, is the astute scientist whose exploration of the mysterious path that leads from the gut to the brain has led to the rescue of countless people with gastric disease and autism.

She's been affectionately called an angel, and a savior by the grateful who follow her Specific Carbohydrate Diet (SCD). The diet is the central subject of her book "Breaking the Vicious Cycle (BTVC) about intestinal health through diet.

Jack, Hannah, Erin, Adam, Katie, Morgan, Michael and their grateful parents are just a few families who consider Elaine an auxilary mother. They are also "Elaine's Children." Elaine's work is bringing the precious youngsters out of their isolation and into exciting connections with the world around them. As Sherri mother to fourteen year old Jamie who is suddenly improving since being on the diet, has said, "When you see them emerge, the true child, with a loving personality, like an iridescent butterfly breaking out of its cocoon, --well, that's why we all persevere"

In addition to the book, people can learn more about SCD for autism at www.pecanbread.com on the Internet. The Pecanbread website and the Elaine's Children support group listserv were started by Mimi who calls herself "Recovery Mom." Without her never-ending effort to get the word out about SCD in the online autism community many of these parents would have never found Elaine's book or the SCD.

Elaine's home and headquarters are high on a hill overlooking Grafton, Ontario. A phone call comes from her friend Lucy Rosset. On this day Lucy has phoned from across the continent to say a doctor is impressed with SCD’s results and has now put five of his young autistic patients on the SCD. Years ago, Lucy was about to have drastic bowel surgery and impulsively turned on her televison to see Elaine being interviewed about the SCD diet. She canceled the surgery, got a copy of Elaine's book, "Breaking the Vicious Cycle", and never looked back. That was the beginning of Lucy's healing and a long, closely bonded friendship. Lucy now operates Lucy's Kitchen, an online shopping source for SCD supplies.

At the age of eight-two, Elaine ministers to her SCD domain like two people half her age . She travels and lectures at many events. Elaine enjoyed actually meeting some of her "kids" at various conferences where she was a featured speaker.

Many of the children who are having success with the SCD previously followed other diets such as the Gluten Free/Casein Free diet which allows rice, a definite "illegal" on SCD. The latest research from Harvard University on ASD children indicates they have a carbohydrate malabsorption problem. So it is not only gluten that has to be removed but complex carbohydrates. SCD is completely gluten free.

Mimi deserves credit for so many ASD parents finding the Specific Carbohydrate Diet and helping new parents understand it. Her Internet list started with under fifty parents last December and has grown to several thousand subscribers. Parents spread the word and share the workload. Experienced mothers answer many of the questions on the Pecanbread support list group.

As to progress and healing, progress they do! One of the mothers, enthuses, "Jack has been making steady progress in language and sociability. He is starting to talk in sentences, comes up to show me things ("look, mommy...it's a train!"), and is doing great in school."

Sue has mentioned Katie's tantrums at school, and shared this, "Her tantrums only last two to five minutes -- it's not like they're thirty minute uncontrollable crying jags or anything. I think they're more like a kid with no language saying, "NO! I DON'T WANNA DO THAT!" but with added frustration because she can't say exactly what she wants.

Anyway, on the "awareness" front ... when I used to give her stickers, she would peel them off the sheet (she has amazing fine motor skills) and stick them on the background in a straight line across, in the same order as they were on the sheet. (And GOD help you if you tried to break the order!) Now, she takes off the stickers and puts them in the appropriate place. For example, in a transportation set, the planes and helicopters are all in the air, the trains on the tracks, and cars on the road. None of this is from direct teaching ... just that she is now aware of how things are. Same with animal sets and so on. In "real life" she will look out the window before we go to school and say, "It's raining. I need my umbrella."

On the receptive language front, she now follows multiple step directions which will take her to other parts of the house. She'll ask "where's doggy" and I'll say, "you left him upstairs beside the computer," and she'll go up to get him. Last night we were reading in her bed and I said, "I don't like it when you lie down to read the book because I can't see the pictures." AND SHE SAT UP WITH THE BOOK!!!

The speech therapist (whom Katie loves and works sooo hard for!) did an assessment and Katie scored a moderate delay in expressive/receptive language, but her vocabulary identification is only LOW AVERAGE for her age. This from a child who only started speaking in more than one word (e.g. no juice, in the box) seven months ago!

Socially, she is starting to play with her peers at school, sometimes initiating. She will say, "Angela help" to get a friend to do a puzzle with her. She will take turns with other kids on the computer. She loves to join in circle games, singing (badly) and dancing with her class. In gym, her Educational Assistant doesn't need to be with her anymore ... she can circulate and help other kids because Katie fits in fine. The other day at home her aunt and uncle were visiting, and she brought us all pretend tea.

At night when we do prayers, after she does the "God bless" part that I taught her (Laura, Mommy, Daddy, Obie), she adds in (without prompting) "God bless" other people she has seen that day. Sometimes it's an aunt or uncle who came to visit; last night it was her teachers!

She still scripts a bit, but mostly she uses the scripts as a basis to play with her toys, changing the vocabulary to suit the toys she is using. She is also still extremely engaged with music, and will stand in front of the stereo singing and making up dances/movements to go with the songs. I haven't figured out if this is an autistic behavior or not! I remember doing it myself with Broadway musicals when I was in high school. Also, she sings a lot a lot when she isn't doing anything else (like, in the car). This worried me for a while until I realized that I do it all the time! I just do it in my head when I'm around other people! I am often singing doing the dishes. So there are some of the many positives we have experienced thanks to SCD.

Just before Christmas Sue reported, "Katie has made another jolt of progress this month.

The tantrums at school have stopped completely. Her teacher says that she is academically higher than most of her classmates, and is one of the few who can lead "calendar" time without hand-over-hand assistance. This involves using a pointer and counting, telling days of the week, and patterning. She is going to be "Old Mother Hubbard's Dog" in the Christmas Concert (don't ask!!!), and is putting her heart into the barking part!

At home -- FINALLY! BE JOYFUL MY MOTHER'S HEART! -- she is playing with Laura. Without me telling her to. Sometimes when they are listening to music I go in to check on them (from my permanent habitat -- the kitchen!) and they are holding hands and dancing to the music. Or Katie is pushing Laura on the "ride on" bus, or they are both on it, riding and giggling. Today they were playing a chase game over my bed, and Katie went to get the stool (as she has seen me do) for Laura from the bathroom so Laura could climb up on the bed after her (at almost 2 Laura is a shortie and can't clamber up onto Mommy's high bed).

Before SCD I would have to call Katie's name over and over to get her to turn my way, and would often have to get right in front of her and say her name just to get her to look at me. This morning she was playing with her back to me and when I came into the room I whispered, "pssst," and she turned around, said, "Hi Mommy!" and came to hug me.

And ... we have beginning conversations! At last! For example, when she is in the bath, she'll say, "I want a towel." I'll say, "which one?" and she'll say, "I want the green!" Or, she'll take her shoes off and I'll say, "where do they go?" and she'll say, "by the door!"

Yesterday we went to the library. There's a park outside, and we were playing, and she struck up a conversation with a man who was there with his little boy! I don't know exactly what they were saying, but I saw 3 or 4 interchanges (I was with Laura). Then we went inside, and she picked out a video. When we got home, she said, "Mommy ..." and waited till I turned around, and then said, "Can I have video? Please?"

So for the "newbie" (newcomers) SCD moms and dads of picky eaters, take heart!

This is my child whom I call Princess Picky. We have never been able to do the intro diet, and Elaine says at this point we don't need to. Katie has had fruit (bananas and pears) from day 1, nut muffins with honey from about two months, and yogurt from 3 1/2 months.

Admittedly her autism was mild to begin with, but now she seems more and more like a regular four year old with a language delay. I'm quite sure (on good days, anyway!) that by the time she's six, she'll be caught up with her peers and will be functioning normally in a grade 1 class.

Oh yeah and, we have done NO therapy except language therapy, so her gains in behavior are just from feeding her brain and making her body comfortable."

Michael's mother Jen shared this: "The other day Michael and I were drawing on the patio with sidewalk chalk. He was doing beautiful circles (newish) and I was, of course, writing his name. For a few weeks he has been recognizing the letters of his name - he could say them and could tell you which one was coming next, but didn't even attempt to write them.

So, we are sitting there and I finish the "l" and he turns around and says "M" and writes M, then so on until he had written his name perfectly on the concrete.

I clapped my hands, called the whole family over and teared up. When I asked his teachers how long he had been able to do that, they didn't even know he could. They've since been having him write his name on every paper - just like the kindergartners do... He's in pre-school. This is really HUGE for us."

The most moving story of all, one that brought a tear to every eye was of the mother who suddenly overheard her previously silent teen aged daughter talking to her doll.

It is hard to believe that over fifty years ago, in the middle of the twentieth century, autism was still in its dark ages. Psychologists like Bruno Bettleheim blamed the mothers and the mothers accepted the blame with a guilt undeserved. He named them "Refrigerator Moms." These women lived lives of agony and despair.

Autism has been treated with medicine, enzymes, counseling, supervised group programs and relegating youngsters to institutions. The incidence of autism has grown tremendously in the past several years.

Although it was already known that there were bio-physical links to the disease often thought mainly to be genetically caused, Elaine's particular dietary intervention is fostering new hope as encouraging progress reports are noted almost daily among parents who are trying the diet. Interest has grown quickly as reports of progress spread around the ASD community.

Dr. Ronald L. Hoffman says in his preface to the “Breaking the Vicious Cycle”, "This diet addresses carbohydrate intolerance more broadly than other approaches."

Only specified carbohydrates are allowed on the diet. The excluded carbohydrates are those that promote bacterial overgrowth. Digestion has been proven to influence the brain-gut connection. Elimination of the 'bad' carbohydrates and other poorly tolerated nutrients promotes cognitive development in many children with autism and ADD and heals digestive disorders.

Some have called the diet “restrictive" What they probably mean is "strict." Adherence and limited choices are two different things and SCD does demand strict compliance but offers a wide choice of pemitted foods and components for excellent recipes and menus.

Most food for SCD is cooked from "scratch." Carey attests, "When I first joined SCD, I thought it was a great diet, but a little fanatical. Then I read . The book explains how most manufactured food loses its flavor and needs to be changed artificially to be tasty. I really recommend that you take that book out of the library and read the chapters about food manufacturing".

In European countries in the past century, many did not use the refined and processed products we have become accustomed to because marketing and advertising have convinced us that we need them to be happy.

The irony is that SCD is as old as the misconceptions. It has been around for fifty years and was pioneered by Dr. Sidney Valentine Haas working with his son, Dr. Merrill P. Haas. They developed the diet which was recognized by the medical world in 1951 as the diet that cured celiac disease. But it was Elaine who forged head on the premise that it is the digestive system which forms the brain connection in many neurological conditions including some cases of autism and epilepsy.

When her own daughter, Judy, suffered mysterious siezures in 1958 which subsequently were followed by a diagnosis of ulcerative colits, Elaine took her to Dr. Haas. She was placed on his Specific Carbohydrate Diet and recovered from both conditions within two years. Dr. Haas died before Elaine could get more detailed information. Elaine wanted answers, and encouraged by her late husband, Herb, entered university at the age of forty-seven where started her odyssey to becoming a molecular biologist and nutritional biochemist began.

Her twelve years in academia were a "treasure hunt" in studying the connection between digestion and behavior and how the Specific Carbohydrate Diet can address problems in both areas. Elaine left school before getting her Doctorate to help people who commited to the SCD.

It is only in the past few years that she has focused her attention on following the progress of autistic childen on SCD and guiding the families in applying the diet. Elaine has been invited to speak at such prestigious conferences Autism One Conference in Chicago. and ay DAN (Defeat Autism Now) conferences.

Her favorite quote is from Proust and was given to her by her daughter, "The real voyage of discovery consists not in seeking new landscapes...but in having new eyes".

It's no wonder Elaine Gottschall is everyone's "Mama Mia".

Carol Frilegh has followed the SCD diet for seven years. She lives in Toronto, Ontario. This was written in 2003. Katie has since been able to return to a conventional diet.