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Four Kids: Gluten and Casein Free
By Jane S. Shook,
M.S., CCC,SLP
Note:
The names have been changed to protect the privacy of these families.
The
four mothers interviewed placed their children on a gluten free, casein free
diet initially because of gastro intestinal disturbances. The children have
been on the diet from six months to four years.
Q:
What symptoms in your child alerted you there was a problem?
Sue O: I noticed there were many symptoms my daughter had in common
with those with autism, which had nothing to do with the autism diagnosis.
Among those were night sweats, dilated eyes, sensory defensiveness,
difficulty potty training, and flat feet.
Jenny: One of the telling symptoms that prompted me to have his
peptides tested was a rash on his diaper area that never went away, even
after his being potty trained for several years.
Angie: John had severe stomach cramps every time he ate, followed by
very mucousy stools.
Sue D: Will was losing weight because he had severe stomach cramps
every time he would eat, followed by ongoing diarrhea, burping, terrible
skin rashes on his face and the backs of his upper arms. He also had dark
circles under his eyes and sleeplessness. He showed opposition to eating
for fear of the severe stomach cramping that would follow.
Q: What changes have you
seen in your child's condition since initiating the diet?
Sue D: Within 72 hours of removing gluten (found in wheat products)
and casein (found in dairy products) all of his horrible digestive
symptoms and his skin condition abated. After three or four months I saw
dramatic improvement in his disposition, concentration and overall motor
organizational functioning.
Sue O: The potty training was almost immediate. A resolution of her
sensory defensiveness and dilated eyes came fairly soon, in the first year
or so. Her progress in physical and occupational therapy was much faster
than expected in that first year with gaining gravitational security and
increasing strength. Every year since then, she has continued to improve
in the way she moves and in speed. Social relations, which had been
hindered because she literally could not keep up with her stronger and
faster peers, improved dramatically. She no longer has flat feet, and her
muscle tone became normal.
Jenny: Since going on the diet, Casey experienced improvement in motor
planning, language, social skills and behavioral and emotional calmness. I
began seeing changes within two weeks.
Angie: John's gastrointestinal problems responded immediately to
removing gluten and casein. Shortly afterward I noticed drastic
improvements in concentration and behavior. He still has learning
disabilities, but he is closing the gap much faster than previously.
Q: What changes occur if
your child eats something off diet? How soon before you observe a reaction?
Susan D: If Will has even one bite of something with gluten he will
have lots of burping, gas and get a rash on one of his cheeks.
Sue O: At first, eating a restricted item produced quite dramatic
results, though delayed by as much as an hour. She goes from the sweetest
thing on earth to mad at the whole world and weepy or hysterical. She
would completely change personality early on, get angry and combative. Her
ears would ring, and her immune system would get hyper reactive for
several days. After several years these reactions got milder.
Jenny: He will have stomach cramping and his behavior becomes less
rational.
Angie: I let John have butter and french fries at a restaurant and
really don't notice a difference. But if he is served something at a
friend's house or at school he gets diarrhea with stomach cramping.
Susan D: I am very careful to not let anything cross Will's lips that
has gluten or that has even been next to something that has gluten. If he
even has one bite of something with gluten he will have lots of burping,
gas and get a rash on one of his cheeks. He also gets very irritable.
Q: How has this impacted
your family life?
Angie: It has changed how our whole family eats. We eat out much less.
I make all of our bread, and order specialty foods over the Internet if I
can't buy them at Whole Foods.
Jenny: Our family just doesn't eat fast food regularly. We still go
occasionally to McDonalds, but I bring buns which I bake at home and
switch them out for the restaurant’s.
Q: What tips have you
discovered to make this do able?
Sue O: There are many more resources than there used to be. I would
recommend becoming acquainted with the Web site
www.gfcfdiet.com and joining their mailing list. Parents using the
diet confer and share strategies. There are also good books referenced on
that website where you can get more information.
Angie: I recommend sticking to the meat and produce aisle in your
grocery store. I buy no prepackaged foods, as the package itself is dusted
with flour to prevent sticking. I make meals ahead. If we go out of town,
I take all of John's meals with us, and ask the restaurant to heat them up
for us. It is a hassle, but if it is affecting your child in a life
threatening way, you will do what you must.
Susan D: I cook only "whole foods", meats without preservatives or
hormones, and fruits and vegetables grown without artificial fertilizers.
I only buy organic foods. I use nothing boxed or packaged, as gluten
(flour) is used in almost all packaging to prevent the contents from
sticking. It is not usually listed in the ingredient label as it is not an
ingredient of the food, but a treatment of the packaging; however, it is
equally toxic to the gluten restricted child. I buy rice, nuts, raisins,
and spices in the bulk section of Whole Foods, where nothing has been
added. What I can't find there I look for on the website:
www.glutenfreepantry.com. I
have gotten ideas for recipes and meal plans from Dr. Lisa Lewis's book,
Special Diets for Special Kids..
Q: How do you handle
eating away from home?
Sue O: We have talked to many chefs to verify which meals are gluten
and casein free or which can be easily adapted. We try to know of one
"safe" meal at each favorite restaurant. That helps us easily eat out with
friends. It is rare to find a restaurant that has nothing we can eat. We
take food with us on vacations, and have grandmothers trained on the diet.
Susan D: Most restaurants dust french fries with flour prior to
frying, or they fry them in the same oil as the chicken nuggets which are
coated in flour. McDonald's french fries are gluten free, but I ask each
McDonald's we go if they fry anything else besides their french fries in
the oil.
Q:
What does a typical day's menu look like?
Breakfast: hot rice cereal made with soy milk, brown sugar and
raisins, sausage or bacon free from nitrites and nitrates, preservatives
or additives, cranberry juice, taco soup or chalupas
Lunch: tuna fish with canola mayonnaise, dried peas, carrot sticks,
rice crackers or gluten free potato chips, gluten free sugar cookies
Dinner: anything I would other wise serve purchased as a whole product
and the recipe adjusted to be "gluten free, casein free" (rice pasta for
wheat pasta).
Q:
What would you like to tell other parents considering this condition?
Sue O: This is not an allergic response to gluten, so allergy tests
are NOT adequate for diagnosis of this condition. This problem is
identified with peptides showing up in the urine. The diagnostic test HPLC
for peptides is offered by a commercial laboratory, AAL Laboratories,
(website is
www.aalrl.com). Great Plains Laboratory offers a totally different
technique for the peptide test and there are some differences in results
with the casein testing. All the research to date has been correlating
response to diet to data that came from the HPLC technique.
Q:
What is your understanding of the rational behind this diet?
Susan D: While it is complicated, it is well defined in Dr. Lisa
Lewis' book, Special Diet for
Special Kids. In a nutshell,
certain people have an inhibited production of the enzyme responsible for
metabolizing gluten and casein. When there is not enough of the enzyme,
the gluten "globs" up in the intestine, stretching parts of the intestinal
wall until it is so thing that certain "peptides" are able to escape the
intestine and enter the bloodstream. The immediate side effects are
burping, gas, diarrhea, and skin rashes. The escaping peptides, called
"Leaky Gut Syndrome," are toxic to the neurological system effecting
behavior, learning, motor planning and development.
For
more detailed information:
Dr. Lisa Lewis,
Special Diets for Special Kids, Implementing a Diet to Improve the
Lives of Children with Autism and Related Disorders (order from Future
Horizons, Inc., 1- 800 – 489 – 0727)
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