What is it?
A casein-free diet is an eating plan in which milk protein (casein) is eliminated by removing all dairy products and all foods containing casein from the diet. It is often, if not always, used in combination with a gluten-free diet, which calls for the elimination of wheat, barley, rye, oats, and any products made from these grains. Both diets are called elimination diets because a particular type of food is virtually eliminated from the child’s meals (1).
Proponents of the casein-free diet say that many children with autism may have gastrointestinal difficulties that make it hard for them to digest milk protein properly. There are different possibilities for ways in which this could affect children with autism. The most studied theory is that eating or drinking milk protein leads to high levels of protein by-products, called casomorphines, in some children with autism. These by-products may then affect behavior like a drug would. Specifically, in these children, casomorphines could reduce their desire for social interaction, block pain messages, and increase confusion. If milk protein is taken out of the diet, the idea is that this will reduce the level of casomorphines, and behavior will improve as a result (2-4).
What's it like?
Parents who choose a casein-free diet for their child must become aware of the ingredients of everything in their grocery cart. Products that contain milk or milk proteins include butter, cheese, yogurt, cream, ice cream, PediasureTM, casein, or caseinate. Foods containing milk or casein in any form should not be purchased. Read labels carefully, because milk or mild products can be present in surprising places, like soy yogurt or sausages. Maintaining a milk-free diet can be hard at first because milk or casein are present in many prepared foods. However, parents can take a casein-free cooking class or read a casein-free cookbook (see Resources) to learn how to cook without milk protein and still provide enough nutrition for the child (see Is it harmful?).
What is the theory behind it?
Casein is broken down in the intestines into several by-products, including one called casomorphine. These by-products are much more common in the urine of children with autism than in children without autism. Some scientists have concluded that they are leaking from the intestines into the blood of these children (2, 5). Many research studies report that children with autism often have gastrointestinal problems, including intestinal leakage (5). The argument is that, if casomorphine is being absorbed into the general circulation in children with autism, then it could affect behavior (2-5).
In support of this theory, injection of casomorphine in animals activates areas of the brain that have been reported to be involved in autism (6). Moreover, there is evidence that blocking at least some of the action of casomorphine improves the behavior of children with autism (7). Finally, recent evidence of a genetic mutation common among children with autism has been traced to a gene involved in gastrointestinal function (8).
Does it work?
The effectiveness of elimination diets in improving the behavior of children with autism has only recently been scientifically researched (9). This research has almost always examined diets that are both casein- and gluten-free.
One well-controlled study focused on children with autism who had abnormally high protein by-products in their urine, and therefore were more likely to be sensitive to casein and gluten (see What is the theory behind it?). One group of these children was fed a strict casein- and gluten-free diet for 12 months. This group had significantly fewer autistic symptoms than the remaining children, who were not fed this diet (10).
Another well-controlled study of casein- and gluten-free diets focused on children with autism regardless of the level of protein by-products in their urine (11).Overall, the study found no significant differences in behavior between children on the elimination diet and children on regular diets, although individual parents reported behavioral improvements (11). A third well-controlled study reported no significant improvements in speech for 13 children who followed a gluten-free casein-free diet for 6 weeks (12). There were limitations in these studies, including relatively short time periods on the diet and/or small samples sizes.
The current thinking is that there is at least some evidence showing that a casein-free diet, when combined with a gluten-free diet, can help improve the behavior of some children with autism. Although the casein-free diet combined with a gluten-free diet is popular, there is little evidence in the current scientific literature to support or refute this intervention. Scientists have concluded that there are currently not enough published studies to draw a meaningful conclusion (3, 4).
Is it harmful?
The major health concern for a child on a casein-free diet is whether the child receives adequate nutrition. A recent report showed that the protein and nutrient intakes of children with autism on gluten- and casein-free diets were not different from those of children with autism on standard diets, but there was a trend towards lower calcium and copper intake in children on elimination diets (13). As a result, some researchers suggest that all children on elimination diets should be under the care of a nutritionist or physician (1). Also, look for calcium-enriched rice milk, soy milk, and orange juice for easy sources of calcium.
Cost
A casein-free diet can be expensive and challenging to do, particularly because our culture uses dairy products often. As casein-free diets become more common, the price and availability of casein-free options are becoming less of an issue. Typically, casein-free foods and milk substitutes have been stocked by specialty, health-food, and organic grocery stores that often have higher price tags. However, milk-free products including soy and rice milk are becoming more readily available in mainstream grocery stores. Also, adapting your diet to include more dairy-free recipes is possible without an increase in your grocery bill. For example, use olive or canola oils instead of butter, or make dishes and simply omit the cheese, like tacos garnished with avocado instead of cheese can work well.
Milk, milk products, and casein are unexpected ingredients in many processed foods. Read ingredients labels carefully when purchasing any prepackaged or processed foods.
Most restaurants offer casein-free meals, though limited menu choices may be available, and special preparation may be requested (i.e. salad with no cheese), depending on the restaurant. Notify your server of your needs so they can help to make sure there are no milk products in the foods you order.
Online sources for casein-free cooking ingredients are also available, and some of these may be priced more affordably (see Resources). Also, bulk or co-op buying may ease the cost of casein-free items.
Resources
Healing Thresholds has partnered with The Gluten-Free Mall. They sell casein-free prepackaged foods that may be convenient for some families.
The Food Allergy and Anaphylaxis Network provides many resources to help children live with a casein-free diet: http://www.foodallergy.org/.
Several books that might be useful:
Diet Intervention and Autism: Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults : A Practical Guide for Parents
How to Eat Well Again on a Wheat, Gluten and Dairy Free Diet
Special Diets for Special People: Understanding and Implementing a Gluten-Free and Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders
The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
References
- Murch, S. 2005. "Diet, Immunity, and Autistic Spectrum Disorders." J Pediatr. 146(5):582-584.
- Reichelt, K.L., and A.M. Knivsberg. 2003. "Can the Pathophysiology of Autism be Explained by the Nature of the Discovered Urine Peptides?" Nutr.Neurosci. 6(1):19-28.
- Christison, G.W., and K. Ivany. 2006. "Elimination Diets in Autism Spectrum Disorders: Any Wheat Amidst the Chaff?" J Dev Behav Pediatr. 27(2 Suppl):S162-S171.
- Millward, C., et al. 2004. "Gluten- and Casein-Free Diets for Autistic Spectrum Disorder." Cochrane.Database.Syst.Rev. (2):CD003498.
- Horvath K, P.J. 2002. "Autism and Gastrointestinal Symptoms." Curr Gastroenterol Rep. 4(3):251-258.
- Sun, Z., et al. 1999. "ß-Casomorphin Induces Fos-Like Immunoreactivity in Discrete Brain Regions Relevant to Schizophrenia and Autism." Autism 3(1):67-83.
- Elchaar, G.M., et al. 2006. "Efficacy and Safety of Naltrexone Use in Pediatric Patients with Autistic Disorder." Ann.Pharmacother. 40(6):1086-1095.
- Campbell, D.B., et al. 2006. "A Genetic Variant that Disrupts MET Transcription is Associated with Autism." Proc Natl Acad Sci USA 103(45):16834-16839.
- Millward, C., et al., 2008. "Gluten- and Casein-Free Diets for Autistic Spectrum Disorder." Cochrane Database Syst Rev. 16(2):CD003498.
- Knivsberg, A.M., et al. 2002. "A Randomised, Controlled Study of Dietary Intervention in Autistic Syndromes." Nutr.Neurosci. 5(4):251-261.
- Elder, J., et al. 2006. "The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial." Journal of Autism and Developmental Disorders 36:413-420.
- Seung, H., et al. 2007. "The Gluten- and Casein-Free Diet and Autism: Communication Outcomes from a Preliminary Double-Blind Clinical Trial." J Med Spch Lang Path. 15(4):337-345.
- Lucarelli, S., et al. 1995. "Food Allergy and Infantile Autism." Panminerva Med. 37(3):137-141.
- Cornish, E. 2002. "Gluten and Casein Free Diets in Autism: A Study of the Effects on Food Choice and Nutrition." J Hum.Nutr.Diet. 15(4):261-269.
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Casein free and gluten free diet
May 17, 2009 by dankohnI have an autistic son age 5. He is very special in his own way and he is very special in my heart. For the last one year the doctor advised me to have a CFGF diets which is very hard for me to enforce. He is very intelligent that he will try to grab and find the bread, yogurt or other foods that he is prevented without my knowledge even I have tried so hard to hide it somewhere else. I have tried my best to stop all the casein and gluten products from him but not 100%. I just want to discuss, is the diet is very important for him?? What should I do to control the diet?
I'm on-board...by myself
Jan 23, 2009 by dankohnWinter stinks. I'm serious. I've had it up to here, literally, with the snow. And I can't stand the cold. The older I get, the harder it is for me to just breathe outside in sub-zero temperatures. The Norman Rockwell imagery is only enticing up to and including Christmas. After that, those images get old. As winter goes on, they become a source of contempt and scorn. My sister lives in California and she laughs and laughs when she says, "Gee, it sure is cold here. It got down to fifty degrees overnight!"
Strangely enough, the cold weather seems to affect the kids not at all. Last week, the kids had an unexpected five-day weekend. School was cancelled Thursday, Friday and Martin Luther King Jr. Day was Monday. A nice little mini-break during which we had NOTHING to do because we couldn't leave the house. Actually, the car did start on Thursday so I took the kids to Target. We wandered aimlessly before picking up Jonathan's blood pressure medications and then one of the wisest, most useful purchases I've ever made: a heated mattress pad. It's wonderful. It's like slipping into a hot tub in bed at night. I can't stand sheets made from anything other than at least 250 thread-count cotton, so flannel sheets are out. I need smooth, but the cotton ones get so cold. Ha - not anymore. Thanks for the gift card, Aunt Sally! We used it well.
Speaking of beds, Thomas is still playing musical beds at night. He is getting better, though. He will come in every other night or so. This morning, he did wait until after Jonathan got up for work to come into our bed. That's our little rule; they can't come in until Daddy gets up for work. Hayley disregards this rule entirely. She usually comes in around 1 a.m. (I think...) but she's such a good snuggler. If I'm still up when she comes in, I send her back to her bed. Lately, since we've been using this heated mattress pad, if I've got mine on (there are separate controls for each side of the bed) and Hayley's snuggled up against me, I wake up soaked with my own, and also some of Hayley's, sweat.
Thomas has been doing really well in school. Last Tuesday when I was in class, the teacher had each of the kids take a dry-erase board and a marker and sit on the floor and practice writing words. This seemed like something we could do at home, so I took a huge dry-erase board from an easel that nobody uses, cut it in half with a jigsaw, and now Thomas and I spend a few minutes every day writing what his teacher calls "popcorn" words; words that come up in conversation a lot. Words like can, today, we, him, she, it, etc. I also pick a really simple book from our shelf and try to get him to sound out words with me. Most of the time he is very reluctant and complains and whines about it. The fact is that he simply does not like to read or write. He might like to read if he learned how, but I don't think that writing will ever be his favorite thing to do. Hayley loves to do it mostly because she lives for praise from grown-ups. Thomas gets shy and anxious when Jonathan and I praise him for his efforts. We try to keep that kind of thing to a minimum, just saying, "Good, okay, what's the next word?" If we don't jump up and down and clap our hands and shout, he's okay. Hayley loves the jumping and clapping.
Today Thomas saw the occupational therapist. She came out to talk to me while the kids were getting their coats on. She mentioned how much improved Thomas is at writing his name. When we try to write it at home, Thomas makes such big letters or he starts writing in a spot that doesn't give him enough room to finish his whole name. The OT gave him a very long strip of paper today, so he was able to fit all the letters on it. He sometimes makes the letter "s" backwards, but she told me that they don't get concerned about that until second grade. He also needs to work on his lower-case "h" and "n" since they look very similar. Other than that, she said he's doing really well and she's noticed an improvement. Something I forgot to ask her was if she's noticed Thomas needing a lot more OT since after winter break, which has always been a hard time for him. Nobody has said anything and the extra OT minutes are built into his schedule this time of year, so if he needs it, he's getting it.
So far, we haven't noticed any side-effects from the Strattera. I don't know if it's really doing anything for him, but that's what we said about the Focalin until we took him off of it. It had been making a tremendous difference...along with a disconcerting facial tic. Jonathan works with a woman whose boyfriend's son is autistic with symptoms of ADHD. She said that this young man had developed an extremely pronounced facial tic while taking Ritalin or Focalin or something...one of the stimulants, anyway. She said that he was switched to Strattera too and hasn't had any tic problems and the medication seems to work for him. Thomas has been taking it for just over two weeks. The doctor said it needs to ramp up in his system for about four weeks before we might notice a difference, so I'm counting the days. I'm also supposed to call her around February 7 to let her know how things are going. She may decide to raise the dose from 10 mg to 18 mg. The lower dose of Focalin didn't produce a facial tic, but the higher one did. We'll see. At least we don't get bored, having to constantly observe our child for signs of one of the millions of side-effects of these meds.
I had the chance to speak to an old college friend of mine that I got in touch with on Facebook earlier this month. It just so happens that his own son was diagnosed with autism as well. He and his wife are 100% sure it was the 18 month MMR shot because he had been doing fine; meeting milestones and developing normally until he had that shot. He lost all of his words over the course of the week following the shot and was a completely different kid one week after the shot. I know that there are a lot of people out there who have dismissed vaccines as a cause of autism (mostly doctors and drug companies, no?), but it's stories like this one from my friend that really make me wonder.
I'm starting to think that autism is not caused by one thing only. I think that vaccines could cause it, but I don't think that Thomas' autism was caused by a shot. He never "lost" words; he just never had any words to lose until he started speech therapy. I really wonder a lot about the flu shot I had in my third trimester with Thomas; my doctor told me to get one, so I did. I wonder if something funky happened with that. The other possibility is that Jonathan was working on a job site during the time Thomas was conceived and while I was pregnant. This site was known to have heavy metals in the soil and Jonathan had to have blood tests before he started working there and after he finished the job to make sure he wasn't poisoned. I don't know if that kind of thing can get into sperm; it would seem that if it did, the sperm would be incapacitated and therefore unable to do its genetic job. Who knows? I'm not a doctor. But I do wonder if Jonathan went to work, put his dirty (heavy metals-laden) jeans and socks in the laundry basket, and then I handled those clothes, shaking them out occasionally and probably releasing all kinds of toxins in the air that I must have inhaled. It's my best guess at this point.
My friend with the autistic son pretty much considers his boy "recovered" due to their strict gluten and casein-free (GFCF) diet. I've really been wondering if we should try it. Of course, this is no time to be spending hundreds more per month on groceries, but I do wonder if Thomas would benefit from it. Jonathan does not want to do it, but purely for selfish reasons, I think. If one person in the house is GFCF, the whole family has to be. I must admit, it would be hard for us; I myself am a bread and pasta junkie, but if Thomas could "recover," my God - how could we not do it? I'm going to check out my buddy's wife's website, gfcfdoneeasy.com, and see if it really can be done easily. For as hard as it would be on Jonathan and I (I don't think Hayley would care much; she never eats that much anyway), it would hands-down be hardest on Thomas. I'll have to think about it a lot more, but I'm really beginning to think we should try it. If it doesn't work, it doesn't work and we can go back to our usual eating habits. But what if it does work? I've heard different statistics about it, saying that anywhere from 60% to 80% of autistic or special-needs kids benefit in some way from a GFCF diet.
The problem is, we all have to be on-board. Right now, I'm on this little board all by myself.
Yummy Food or Yucky Food
Sep 11, 2008 by AnonymousOne Person's Yummy Food Is Another Person's Yucky Food
Vegetables and protein (fish, poultry, meats, and beans) are the most common food aversions. Some children even reject fruits. The diet becomes extremely restricted to bland, white foods, including sweets, breads, pasta, crackers, pretzels, chips, and macaroni and cheese. These foods are glycemic and raise blood glucose, quickly increasing the demand for insulin production. Zinc is part of the insulin molecule and is depleted, resulting in abnormal taste and taste perception. What develops is an aversion to the flavors in natural foods and increased cravings for highly sweetened foods and those foods containing MSG. (MSG affects the brain's perception of flavor.) The diet becomes more narrow, and nutritional status declines, resulting in more limited food choices. The white diet and vegetable aversion is common among children in Western cultures due to the high exposure to processed and sweet foods. For children with sensory and developmental issues, the aversions are much more pervasive and serious.
There are three potential contributors that lead to the limited appetite, cravings, and food aversions:
The negative effect of this combination can result in faulty messages from the sensory receptors to the brain and dysfunctional interpretation of those messages by the brain. Perception is the "truth" for that person. This is why begging, bribing, and punishing do not and will not work.
The solution is multifaceted. Correction of nutritional deficiencies and elimination of toxic metals are mandatory and involve appropriate therapeutic supplementation based on findings. Foods that cause reactions and/or opiate-like peptides need to be eliminated as healthy, safe foods are introduced and accepted.
How to Go from Yucky to Yummy-The Trojan Horse Technique
For those with texture issues, it is important to adapt the diet to the child's oral and food developmental stage. If textures are a sensory issue, no matter how tasty the food, it will not be consumed. By providing the food in a sensory-pleasing form, the child benefits nutritionally and begins to find mealtime more pleasant and rewarding. Purees are generally helpful. They are better tolerated and can open the door for getting more types of foods into the diet. Many family dishes, including soups, casseroles, or the meat and vegetable main dish, can also be served pureed for the child who has sensory texture issues. In this way, the whole family is enjoying the same meal.
Many of the recipes in this book have been selected to expand nutritional intake, especially using the Trojan Horse Technique-hiding a small amount of the new food (especially vegetables and proteins) within a very well tolerated and acceptable food. Each child differs and, therefore, it is important to identify what foods will work as "carriers" to get the new foods in.
Purees can be made from cooked fresh or frozen vegetables and/or purchased baby foods. If your child is offended by being served baby food, simply keep it well hidden. Create interesting new names for the foods and see that others in the family join in consuming them. The secret to success in introducing these new foods is to combine a small amount with the food the child already likes. For many children, this is the only way new foods can be introduced.
Start with 1 tablespoon (15 g) or less-and then increase when tolerated. Hide the cooked vegetable purees anywhere you can, selecting colors that are not obvious when added to the carrier food. The carrier food needs to be one that the child enjoys. It may even be a food that is being slowly eliminated. Include pureed fruits to improve the taste. Here are some examples of places to hide foods (and even supplements):
The above is an excerpt from the book The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.
Published by Fair Winds Press; November 2006;$24.95US/$32.50CAN; 978-1-59233-223-6
Copyright © 2008 Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N
Author Bio
Pamela J. Compart, M.D., is a developmental pediatrician in Columbia, Maryland. She combines traditional and complementary medicine approaches to the treatment of ADHD, autism, and other behavioral and developmental disorders. She is also the director of HeartLight Healing Arts, a multidisciplinary integrated holistic health care practice, providing services for children, adults, and families.
Dana Godbout Laake, R.D.H., M.S., L.D.N., is a licensed nutritionist in Kensington, Maryland. Within her practice, Dana Laake Nutrition, she provides preventive and therapeutic medical nutrition services. Her practice includes nutritional evaluation and treatment of the full spectrum of health issues affecting adults and children with special needs.
6 Back to School Lunch Ideas
Sep 11, 2008 by Anonymous6 Back to School Lunch Ideas
By Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.
Author of The Kid-Friendly ADHD & Autism Cookbook
Lunch #1: BBQ Chicken for Champions
Use: BBQ sauce or honey
Drink: water, GFCF* V8 juice, GFCF juice box, fortified organic rice milk box
Snack if needed: GFCF chips & fruity salsa (¼ C) in BPA-free container
Toy Surprise: Girls: yarn bracelet, Boys: Miniature toy character figure
BBQ Sipping Sauce -- ¼ C (put in BPA-Free container):
Fruity Salsa:
Lunch #2: DLT ("Deli" meat, Lettuce & Tomato Sandwich)
GFCF Potato Salad ⅓ cup from recipe. Serve in BPA-Free container
Fruit (apple or grapes) -- in BPA-Free container
Drink: water, GFCF V8 juice, GFCF juice box, fortified organic rice milk box
Toy Surprise: Hair scrunchie for girl. Baseball card for a boy.
Snack if needed: Peanut butter on rice crackers
GFCF Potato Salad Ingredients:
Dressing:
Preparation:
Prepare the dressing combining the mayonnaise, mustard, and salt and pepper to taste. Combine.
Combine potatoes, egg, onions, and celery and stir in the dressing.
Serves 6 to 8.
Lunch #3: Kids Favorite Chicken Salad & Deviled Eggs
Chicken Salad ⅓ to ½ C served in BPA-Free container
Deviled eggs (1-2) -- served in BPA-Free container
Carrot sticks (wrapped in waxed paper) dipped in applesauce (in BPA-Free Container)
Snack if needed: GFCF chips & hummus in BPA-free container
Drink: water, GFCF V8 juice, GFCF juice box, fortified organic rice milk box
Chicken Salad Ingredients:
Preparation:
Combine first chicken, celery, and grapes in a large bowl; set aside. In a small bowl, whisk together remaining ingredients; combine with chicken mixture, using as much or as little as necessary to moisten as desired. You may add a little more mayonnaise if you like a creamier salad. Chill and stir again before serving.
Serves 4 to 6.
Deviled Egg Recipe:
Preparation:
Mash yolks and combine with mayonnaise, mustard, salt, and relish. Refill centers of the egg whites with the mixture. Garnish with ground paprika.
Serves 6 (2 halves per person)
Lunch #4: Meatball Spaghetti Sauce
Meatballs in Spaghetti Sauce (1 C) without the spaghetti -- served warm in thermos
Wonderful Waldorf Salad: ⅓ to ½ cup
Broccoli trees, cold asparagus or carrot strips dipped in Russian Dressing or honey ( ¼ C in BPA-Free Container)
Snack: Organic GFCF "O"s
Fruit smoothie ½ to ¾ C in cold thermos or GFCF V8 juice, GFCF juice box, fortified organic rice milk box
Snack if needed: GFCF chips & bean dip in BPA-free container
Toy: Stickers appropriate to the child
Spaghetti and Meatballs:
Put onion in food processor and mince. Add bread, water, salt, and oregano and mix again. Pour mixture into a mixing bowl. Knead by hand together with ground beef until thoroughly mixed. Shape into desired meatball size. Put meatballs into a slow cooked with spaghetti sauce and cook for 4 hours. Refrigerate.
Serves: 4 to 6
Wonderful Waldorf Salad Recipe:
Fruit Smoothie:
Add one of the following and blend at high speed until smooth and thick.
Russian Dressing:
Servings: 8
Lunch #5: Chicken & Magical Muffins
Baked or grilled chicken (leftovers from dinner) ½ cold chicken breast
Apple salad served in cold thermos
Veggie-Muffins 1-2
Fruit smoothie ½ to ¾ C in cold thermos or GFCF V8 juice, GFCF juice box,
fortified organic rice milk box
Snack if needed: Carrots & bean dip in BPA-free container
Apple Salad:
Dressing:
In a medium bowl, combine the salad ingredients. In a small bowl, combine the dressing ingredients, Pour the dressing over the fruit mixture and stir.
Veggie-Muffins:
Mix purees in with the batter, stir in chocolate chips (optional). Transfer the mixture to a muffin pan, filling each cup about two-thirds of the way. Bake at 375º F for 20 minutes or until a toothpick inserted in the center of a muffin comes out clean. Do not overcook, as this will result in dry muffins. Once cooled, these muffins can be frozen to be eaten later.
Yields 12 muffins
Lunch # 6: Sensory Sensible (for those who avoid "lumps and bumps")
Pot Pie Muffins (2)
Hummus
Fruit smoothie
Snack: Bean dip
Pot Pie Muffins:
Mix purees in with the batter, stir in chocolate chips (optional). Transfer the mixture to a muffin pan, filling each cup about two-thirds of the way. Bake at 375º F for 20 minutes or until a toothpick inserted in the center of a muffin comes out clean. Do not overcook, as this will result in dry muffins. Once cooled, these muffins can be frozen to be eaten later.
Yields 12 muffins
*Gluten-Free Casein-Free