Four Kids Gluten and Casein Free

By Jane S. Shook, M.S., CCC, SLP

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 have 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 otherwise 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 rationale 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 thin 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.

Note: The names have been changed to protect the privacy of these families.

 
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