Table of Contents
Foreword by Bernard Rimland, Ph.D.
PART ONE: MILES'S STORY: Hunting the Jabberwock
PROLOGUE
ONE The Diagnosis
TWO A Plan of Action
THREE The Importance of the Diet
FOUR Science's Questions, My Answers
FIVE Red Flags
SIX "Trials"
SEVEN Breakthroughs
EIGHT Moving Forward
EPILOGUE
PART TWO: THE DIET
NINE Questions and Answers
TEN First Steps: How to Get Started
ELEVEN Going Gluten-Free
TWELVE So, What Can I Feed My Child?
THIRTEEN Basic Recipes
Appendix A Recommended Reading, Resources, and Organizations
Appendix B Mail Order for Gluten-Free Foods
Index
Read an Excerpt
Chapter One
The Diagnosis
A severe language delay is almost never diagnosed in a child under two, and autism is tricky--sometimes there are a few words and normal developmental milestones in the beginning and it's hard to notice when they disappear or don't increase. Besides, so many well-meaning people had reassured me:
You can't compare him to Laura--she was so precocious. Boys talk later than girls do. He's had so many ear infections. Alan didn't talk until he was three. My next-door neighbor's son didn't talk until he was four. Einstein didn't talk until he was . . .
I had changed pediatricians twice, begging for help or information regarding Miles's irregular sleep patterns and chronic ear infections. At that time, when he was a year old, his social development was not yet a problem, but his ears were. The first two doctors had concurred in a misdiagnosis of asthma due to his mucusy breathing, and prescribed albuterol, a medication that opens bronchial tubes, in the words of the first doctor, "to use if the noise bothers you."
"My mother just read an article linking milk and wheat to ear infections," I had explained to the second doctor. "Do you think I should try taking him off those foods?"
"The medical community doesn't put much stock in those studies," she had said. "You can try it if you like."
"Well, Miles loves milk. I'd hate to take it away if I don't have to."
"It probably won't make a difference anyway. Some kids just get ear infections. They'll clear up in the spring."
I had doubted that the ear infections would "clear up" bythemselves. Alan and I had had the same disconcerting feeling that we would never again sleep through the night.
After eight ear infections in three months, and countless doses of antibiotics, I had asked the doctor if she would recommend ear tubes for Miles.
"I don't like medicating him so often," I had explained. "It seems like he's always on antibiotics. And he's up for so much of the night. I am really not functioning very well on so little sleep, and Laura is finding his constant crying extremely stressful."
"Well, some children require more effort than others. Just because you had an easy time with Laura doesn't mean there's something wrong with Miles."
"Yes, I realize that, but he is just so difficult. I own a retail business, and I can't tell you how many times I've had to leave work to bring him in. And the screaming . . . I'm sure there's something wrong with him. I thought that if he had ear tubes . . ."
The doctor had looked at me coldly.
"Parenting can sometimes interfere with our work schedules," she had said. "Perhaps you are the one who needs help, not Miles."
I was stunned. I had stared at her for a moment, then turned around and walked out of that office for the last time.
This event begins our story. I was to learn that the next chapter of our lives was not to be unique. To other parents of autistic children, it was a hauntingly familiar sequence of events.
Dr. Stover, our new pediatrician, was booked up when we switched to her practice, so on January 12 we saw her nurse-practitioner, Susan Percy.
"What about his breathing?" I asked. "We were told it was asthma, but the albuterol doesn't seem to make a difference. Can you hear it? It's not really wheezing. It's sort of a honking or clucking in the back of his throat."
Mrs. Percy listened for a moment. Then she went out and came back with Dr. Stover, who smiled and introduced herself. Miles picked up his shirt from the examining table and used it to play peekaboo with her while she put a stethoscope to his chest.
"Cute baby," she said, smiling. "Who told you that was asthma?"
"Two different doctors. What is it?"
"Just mucus," she said. "I don't know what causes that--allergies maybe--but don't worry about it. When he's old enough to clear his throat, it will go away. You can throw away the albuterol--it won't help."
"I didn't think it did," I said, smiling with relief.
In mid-February I was back in her office. I explained that I was concerned because Miles's language development seemed slower than Laura's had been.
"From what you've told me, Laura was an early talker," said Dr. Stover. "At this age, at thirteen months or so, two or three words is perfectly normal. Miles's social development looks good--I wouldn't worry. But I will send you over to Otolaryngology for a hearing test. I agree that he has had an awful lot of ear infections."
Two weeks later, on March 3, Miles did fairly well on the test. He showed only a very mild hearing loss--"within normal parameters."
We visited the office again a month later, on April 4, for Miles's fifteen-month "well-baby" visit.
"Miles's ears look good."
"Yes, well, they should. Alan says we should buy stock in amoxicillin. But one more ear infection and he's getting ear tubes--Dr. Roberts at Oto gave me his solemn promise."
Ear infections occur when fluid builds up in the inner ear. "Tubes," which are called "grommets" in England, are little rubber cylinders that are installed in the eardrum to help alleviate the pressure and hopefully prevent further infections. While the child is anesthetized, his doctor makes a tiny incision in the eardrum and inserts the tube as if it were a window between two rooms.
Mrs. Percy laughed and handed me a form to sign, authorizing them to give Miles his measles-mumps-rubella vaccine.
"What happens if I don't sign this?" I asked.
"Well, you won't be able to send Miles to nursery school, or kindergarten."
"Oh. Okay. It's just that these risk warnings are kind of scary."
"Well, vaccine reactions are very rare. Try not to think about it."
"Okay. But first, can you give him some Tylenol? He had a really bad screaming episode after his two-month DPT shot."
Three days later I was back. Miles had another ear infection.
Eight days after the shot, on April 12, after giving me another lecture about how the medical community was trying to be more conservative about inserting ear tubes, the otolaryngologist approved the surgery. It would be at the end of the month, just before our trip to Los Angeles to visit Alan's family.
Then, two days after that, Miles had a really miserable day. It was the first night of Passover, a night when my family always came together from different parts of the country. I was having the Seder, the ceremonial dinner, at my house, and was frantically trying to prepare. Fortunately, I had arranged for Lyn, our baby-sitter, to stay for dinner and to put the children to bed. Miles was pale and cranky, and barely acknowledged his grandmother or his adored Uncle Matthew. He cried during the meal and refused to eat, instead drinking several cups of milk. Lyn put him to bed early.
Late that night, only an hour after I finished cleaning the kitchen, Miles was up screaming. His face was red and his limbs seemed to be shaking. Alan put some liquid ibuprofen in a cup with a couple of ounces of milk, but no sooner did Miles drink it than he threw up. Over the screaming I hollered to Alan to find the thermometer--Miles was beginning to feel warm.
By the time Alan found the thermometer Miles was very, very hot. I measured his temperature at 106. His limbs were trembling violently, and his screams had intensified. I threw him into his car seat and drove the two miles to the hospital as fast as I could, running two red lights in the quiet streets.
Finally, after three Tylenol suppositories, Miles stopped crying and fell asleep. The resident at the emergency room did not have an explanation.
The next three weeks were strange ones. Miles seemed very spaced out. He stopped talking, stopped smiling, and started drinking a lot of milk.
Then, at exactly sixteen months old, Miles got his ear tubes. In the waiting room, before the surgery, he held my hand as we watched the tropical fish swim peacefully in a large tank. "Ishhhhh," he whispered, for the last time.
After the surgery the doctor told us he had had something called "glue ear."
"The fluid in his ear had hardened into a thick gum, like silly putty," he said. "It must have been causing a bit of discomfort and perhaps some mild hearing loss."
"What causes that? Could that be from allergies? My mother thinks ear infections are caused by milk allergy."
"I don't know about that. I do see this in some children. It's good that we got in there, since masses like that harbor infection and take a long time to go away by themselves. You're probably going to see a real explosion in his language now."
"Thank you so much," I said, relieved. "We're so glad to have this over with." Alan picked up his dazed son and carried him out to the car.
"Now maybe things will get back to normal," he said.
But things did not.
Soon we forgot what normal was.
My father-in-law was very ill, and we knew that it was the last time that our children would ever see him. I brought the video camera on our trip to California, and taped much of our visit. Laura was so cute, singing songs and telling stories in her squeaky little voice, golden ringlets bouncing around her head.
Meanwhile, in the background, Miles trotted back and forth across a patch of gravel in his grandparents' back yard. Back and forth, back and forth. Several times I tried to engage him, my voice on the videotape sounding cheerful but with an obvious note of concern.
"Hi, Miles! Hi, sweetie! Whatcha doing?"
Miles would turn and stare at the camera, unsmiling, for a few seconds, then turn away. There was no joy, no sadness, no curiosity, no connection, nothing. I moved the camera away from my face and tried again.
"Miles! Miles! Milo! Miles!"
He finally turned and looked at me as if I were a few lines of incomprehensible hieroglyphics, a meaningless combination of features. Chilled, I turned off the camera.
At the table that evening, in his high chair, I saw a faint glimmer of acknowledgment as he recognized a familiar command. "Milo, make, bang-bang! Make bang-bang!" I smacked both hands on the table to show him. He knew this; he had done this before. It was one of his favorite games. I felt a twinge of fear. Suddenly, he responded, just for a moment, patting the table with his hands. Then, abruptly, he looked away. I could not get him to do it again.
After our trip, life became much worse. Miles's stools had become very loose, with a sour, pungent smell, and he became more and more withdrawn.
One day I was trying to get lunch ready before Miles woke up. Please, just one more minute. He could read my mind. I heard a whine from the baby monitor on the kitchen windowsill. I had forgotten to make a bottle. Urgently, I rinsed off my hands and poured milk into a bottle, screwing on the nipple as I ran upstairs. Sometimes, if he got the bottle fast enough . . . but it was too late. The whines had turned to screams.
Every time he woke up, every morning and after every nap, Miles would cry inconsolably for about half an hour. Nothing seemed to help, and nothing distracted him. I could tell that Lyn, our babysitter, was close to quitting.
"Babies are not supposed to cry this much," she said, over the din, as if I had some control over the duration of his screaming.
I looked at her helplessly. Aren't some babies just high-strung?
"Miles, cut it out! Stop!" Alan once shouted. He so rarely raised his voice to the children; it actually startled Miles into stopping, for a moment. Then he began to scream again.
"Miles, Miles, you're giving me a migraine."
"Maybe he's got a migraine," I suggested. "Look at how he's rubbing his forehead on your chest." I took over for a while, holding him and making soothing noises, for my own comfort, I suppose, since it seemed to make little difference to the unhappy child in my arms.
Sometimes, after ten or fifteen minutes, we could get him to stop with a bottle of milk and a Disney sing-along video. I remember the feeling of relief when the moving images finally caught his attention and the screaming began to ease up. I would hold perfectly still with him in my arms, afraid to move. After a few minutes, my muscles would begin to ache, and I would ease him onto the couch, moving so slowly and noiselessly that even my cat wouldn't have noticed.
After a while, we found ourselves relying on those videos a lot.
"Hey, Alan, remember before we had kids, when we agreed that we disapproved of TV for young children?"
Alan just looked at me grimly.
We got into the habit of keeping cups of milk handy at all times, just to avoid the screaming. On ice, in our bedroom, for at least one nighttime awakening. Three cups in the diaper bag for a two-hour trip to the mall.
I was at my store. A frequent customer of mine, Patty, was there with her little boy. Her son was the same age as mine and was also not really talking, although he said a couple of words. I smiled at him. He smiled back. Patty prompted him.
"Jimmy, can you say hi to Karyn?" His grin widened. "He's started saying hi," she explained. Suddenly, he pointed at a poster behind me, which had a picture of a bird on it.
"Look!" he said excitedly.
At that very moment my mind became firmly unsettled. My belief that my children were safe and healthy was seriously threatened for the very first time since I had become a parent. At first I couldn't put my finger on it, but there was something about what Patty's son had just done that mine simply could not do. Then I realized that he had pointed.
Just what was it about pointing that was so special? I recognized that it was a child's request for shared attention, his way of saying "I want you to see what I'm seeing." Miles did not seem to care about things like that. When Laura was a toddler, I could hardly sit down before she filled my lap with items to share with me, or for me to appreciate with her. She had pointed regularly, while Miles did not. What I didn't realize at the time was that the absence of pointing is one of the defining characteristics of autism.
Read a Sample Chapter
Appendix A
Cookbooks
Special Diets for Special Kids, by Lisa S. Lewis
This book is my favorite, and not just because Lisa gave me an acknowledgment in it! My dog-eared copy lives in my kitchen, where it has been spattered with oil, crumbs, honey, and cocoa powder as a testimony to its usefulness. It has the largest compilation of gluten-free, dairy-free recipes ever put together specifically for people on this diet.
The Gluten-Free Gourmet series, by Bette Hagman
The Complete Food Allergy Cookbook, by Marilyn Gioannini
Raising Your Child Without Milk, by Jane Zukin
The Yeast Connection Cookbook, by William Crook
Recommended Reading
Autism Treatment Guide, by Elizabeth K. Gerlach (see page 220)
Detecting Your Hidden Allergies, by William Crook
Is This Your Child? by Doris Rapp
The Four Pillars of Healing, by Leo Galland
Let Me Hear Your Voice, by Catherine Maurice
Digestive Wellness, by Elizabeth Lipski
Resources
Autism Network for Dietary Intervention
P.O. Box 17711
Rochester, NY 14617-0711
Fax: 609-737-8453
E-mail: AutismNDI@aol.com
Web site: www.AutismNDI.com
Founded by Lisa S. Lewis and Karyn Seroussi to provide support for families using dietary intervention in the treatment of autism and related disorders. The ANDI News is a quarterly newsletter containing recipes, research updates, and articles by parents and physicians. Cost of a calendar-year subscription is $20 U.S., $26International.
Celiac Sprue Association (CSA/USA)
P.O. Box 31700
Omaha, NE 68131-0700
Tel: 402-558-0600
Fax: 402-558-1347
CSA provides information and referral services for persons with celiac disease and dermatitis herpetiformis (a skin condition caused by gluten intolerance) and has published a series of low-cost brochures on gluten-free commercial foods and related topics. Their annual fall conference provides opportunities to present current information and research of celiac sprue and an exchange of approaches to coping with the gluten-free diet. CSA has an annual promotion during October, which is Celiac Sprue month, and one-day regional conferences during March.
CSA publishes a quarterly newsletter, Lifeline, at a subscription cost of $20 a year, that has many recipes for gluten-free foods, order forms for special products, and chapter and resource unit contacts. Send $8 for their comprehensive shopping guide of gluten-free foods.
Celiac Disease Foundation (CDF)
13251 Ventura Boulevard, Suite 3
Studio City, CA 91604-1838
Tel: 818-990-2354
Fax: 818-990-2379
The mission of the Celiac Disease Foundation is to provide services and support to persons with celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research. They distribute reliable up-to-date information about CD/DH and the gluten-free diet, seek to increase awareness of the condition among all health-care professionals, food and drug manufacturers, the food service industry, the media, and the public.
The Celiac Disease Foundation has local chapters and will assist persons who wish to start a support group in their area. They provide parent-to-parent matching through a group called Raising Our Celiac Kids (ROCK). They publish a quarterly newsletter, CDF Newsletter, that is included in membership fees, along with a brochure, Celiac Disease. They also have a bibliography of books and articles that are available to members including Guidelines for a Gluten-Free Lifestyle, Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat, and The Gluten-Free Gourmet. They also have videotapes. Call or write for order forms and further information.
The foundation collects information on physicians and researchers who treat or study the condition and provide this information to their membership. They will provide information and referrals to other resources.
Celiac/Coeliac Wheat- and Gluten-Free Internet List
A listserv is simply a large e-mail discussion group, with all outgoing e-mail being sent to all members at once. It is a free service for Internet users. This is how I first got started as a gluten-free cook. The celiac list is a wonderful resource and the best way to get answers and opinions fast. If you find that corresponding on the list is taking up too much of your time, you can unsubscribe, or set your subscription to no mail until you are able to return. Although it is really a list for people with celiac disease, many parents of autistic children can be found there.
To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe CELIAC Your Name
You will receive a letter explaining how to use the list.
St. John's also hosts a very large autism list, which includes several parents using diet and biological intervention.
To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe AUTISM Your Name
You will receive a letter explaining how to use the list.
ARI (Autism Research Institute)
4182 Adams Avenue
San Diego, CA 92116
The ARI, founded and directed by Bernard Rimland, Ph.D., functions primarily to educate and support families of children with autism about current research, and about the various therapies available, including "alternative" therapies. For a small copying fee, they will send you packets of information on a variety of interventions. I highly recommend their quarterly newsletter, The Autism Research Review International, which reviews biomedical and educational research in the field of autism and related disorders. To subscribe in the United States, send $18; international subscriptions are $20 in U.S. funds.
You can write to the ARI for information on registration for the annual DAN! Conference. To order the DAN! Protocol, a physicians' biomedical diagnostics manual, send $25.
CAN (Cure Autism Now)
5225 Wilshire Boulevard, Suite 226
Los Angeles, CA 90036
Tel: 323-549-0500
E-mail: CAN@primenet.com
Web site: www.canfoundation.org
You may request a "parent pack," which includes the CAN Consensus Statement.
Marianne Toedtman, AGRE Family Recruiter
Tel: 888-AUTISM-2
E-mail: familyAGRE@aol.com
The Feingold Association of the United States
127 East Main Street, Suite 106
Riverhead, NY 11901
Tel: 516-369-9340
The Feingold Association of the United States is a nonprofit organization whose purposes are to support members in the implementation of the Feingold Program and to generate public awareness of the potential role of food and synthetic additives in the treatment of learning, behavior, and health problems. The program is based on a diet eliminating synthetic colors, synthetic flavors, and the preservatives BHA, BHT, and TBHQ. They have recently added a special section to their program introducing members to the gluten- and casein-free diet.
Developmental Delay Resources
4401 East West Highway
Suite 207
Bethesda, MD 20814
Tel: 301-652-2263
Web site: www.devdelay.org
The DDR is a not-for-profit organization whose mission is to educate parents and professionals supporting children with developmental delays about healthy options for treating the whole child. They publish a quarterly newsletter called New Developments, which includes articles about therapies, conferences, and nutrition, with lists of helpful organizations and mail-order for books.
The Great Plains Laboratory
9335 West 75th Street
Overland Park, KS 66204
Tel: 913-341-8949
Fax: 913-341-6207
Call for a urine collection kit if you are interested in testing for fungal metabolites -- the waste products of gastrointestinal yeast -- or to order a copy of Biological Treatments for Autism & PDD.
The National Vaccine Information Center (NVIC)
512 West Maple Avenue, Suite 206
Vienna, VA 22180
Tel: 703-938-DPT3
800-909-SHOT
Fax: 703-938-5768
E-mail: info@909shot.com
Web site: www.909shot.com
The National Vaccine Information Center is a national, nonprofit educational organization founded in 1982. It is the oldest and largest national organization advocating reformation of the mass vaccination system and is responsible for launching the vaccine safety movement in America in the early 1980s. Located in Vienna, Virginia, NVIC is dedicated to the prevention of vaccine injuries and deaths through public education. NVIC provides assistance to parents whose children have suffered vaccine reactions; promotes research to evaluate vaccine safety and effectiveness as well as to identify factors which place individuals at high risk for suffering vaccine reactions; and monitors vaccine research, development, policymaking and legislation. NVIC supports the right of citizens to exercise informed consent and make educated, independent vaccination decisions for themselves and their children.
Web Sites
- GF/CF Kids (Includes new listserv for parents using the diet for the treatment of autism): www.gfcfdiet.com
- Dr. Sidney Baker's new web site: www.sbakermd.com
- William G. Crook, M.D.: www.yeastconnection.com
- University of Pittsburgh Medical Center's Center for Complementary Medicine -- Forum on Alternative and Innovative Therapies for Children with Developmental Disorders and Brain Injury: www.healing-arts.org/children
- Dr. Jeff Bradstreet ("the Good News Doctor"): www.gnd.org
- Paul Shattock at the University of Sunderland: osiris.
- sunderland.ac.uk/autism/treat.html
- Grain-free, dairy-free recipes: www.PaleoFood.com
- Autism-FBI (Fighting Back with Dietary Intervention Listserver) -- This list is for intermediate and advanced GF, CF, yeast-free dieters: www.onelist.com/subscribe.cgi/Autism-FBI
- Net articles of Dr. Kalle Reichelt, Pediatric Research Institute, Oslo, Norway: www.panix.com/~donwiss/reichelt.html
- Tampere University in Finland's abnormal findings of peptides in urine samples: www.sci.fi/~biopteri/e-index.html
- Interview with Donna Williams -- Did the Wrong Diet Make This Woman Autistic?: www.jaymuggs.demon.co.uk/donna. htm
- Travel Tips -- helpful in locating gluten-free food while traveling: www.idsl.net/celiac/travel/index.htm
- Articles and other links to gluten-free diet information: www.GFlinks.com
- ADHD and milk (lots of links): www.nowheat.com/grfx/nomilk/index.htm
- Future Horizons -- Books about autism: www.futurehorizons-autism.com
- Stephen M. Edelson -- Center for the Study of Autism (Oregon): www.autism.com
- Can autism be detected at 18 months? The needle, the haystack, and the CHAT: php.iupui.edu/~rallen/chat.html
- The CHAT test: php.iupui.edu/~rallen/thechat.html
- The Autism Autoimmunity Project: www.gti.net/truegrit
- The Progress in Medicine Foundation is a nonprofit organization supporting medical research and physicians using nonmainstream research-based medicine. You can get updates on Dr. Sinaiko's appeal at their web site: www.treatmentchoice.com
Copyright © 2000 by Karyn Seroussi
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