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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Please comment on this autism topic.
Responding to casein-free diet
Apr 18, 2012 by AnonymousThis is another topic families ask me about and I would print this for them if there was a PDF source
Responding to casein-free diet
Apr 18, 2012 by AnonymousThis is another topic families ask me about and I would print this for them if there was a PDF source
Physician Cautions Against Restrictive Diets for Autism Unless Necessary
Feb 17, 2011 by AnonymousThis is in response to Dr. Jay L. Hoecker, an emeritus consultant in Mayo Clinic’s Department of Pediatric and Adolescent Medicine, suggests that parents of children with autism should be careful when starting their child on a new diet.
What terrible advice. It is not hard to do a Gluten Free Casein Free Diet and in fact is healthier than most diets people have their children on.
It is meat, vegetables, fruits, and avoiding wheat based flours, but this doesn't mean they don't eat "grains" . It is about cooking from scratch. It means no preservatives, or colored dyes.
Calcium and Vitamin D can be achieved from Almond Milk or Rice Milk.
The added comment that "Temple Grandin's Mother didn't put her on this diet is ridiculous. I know first hand that when my daughter has "gluten" she regresses in her behaviors, her ability to concentrate and her ability to talk.
It sunds like Dr. Jay is just another doctor that would rather pump kids with drugs that go the natural healing route. Simply appalling!
Living Gluten Free – Right to Heal
Feb 22, 2010 by karmic healthBy Sandi Star, CCN
After struggling for over 40 years with chronic migraines, IBS, Muscle and joint pain, fatigue, brain fog, asthma and a slew of other ailments and frustrations I decided to take a closer look at the cause rather than obsessing on the symptoms. I was tired of relying on doctors to give me answers and tired of the medications that only gave me side affects and little relief.
I had been committed to health and fitness for over 20 years, losing close to 50 pounds and 5 dress sizes, however I still had all the chronic conditions that played havoc in my life. I realized there was a key element missing and soon found out it was my reaction to gluten and dairy. I didn't know enough about food intolerance or allergies or at least put the two together. I never believed food could have such a serious impact on overall health let alone be the direct cause of my diseases. With what I know today I’m surprised my doctor didn’t put the connection together when he diagnosed me with Sjögren’s Syndrome (autoimmune disease). Sjögren’s is one of the symptoms of Celiac along with a long list as you will see below and nutrition plays a critical role in the healing process. By making the appropriate diet changes – (gluten and dairy free), I’ve managed to eliminate my migraines, IBS………etc., etc., and have the Sjögren’s Syndrome under control. Even better, I have eliminated all medications and use food and natural remedies for nutrition and overall health. Now that you know why I became a clinical nutritionist and why I started Karmic Health lets get into the details of why it’s so important to understand gluten and its relation to diseases.
Why the problem with gluten now? A lot has changed in the way we harvest food compared to 50 years ago. Some of the seed companies began engineering wheat kernels that could be more easily ground and produce fluffier flour to make the soft, delicious white bread for example had to have greater yields; it made more money for the farmer and increased sales.
Gluten is a composite of the proteins gliadin and glutenin. These exist, conjoined with starch, in the endosperms of some grass-related grains, notably wheat, rye, and barley.
Understanding what happens in the body and some of the symptoms will help millions of people who go undiagnosed. Celiac is the most common genetic disease of mankind (yet for every person diagnosed, 140 will go undiagnosed).
A wheat allergy is the body’s abnormal autoimmune response to a certain protein component of wheat; it’s exhibited by a severe sudden onset allergic reaction. Usual symptoms are immediate coughing, asthma, breathing difficulties, and/or projectile vomiting. It can cause life-threatening responses in allergic people. A true Wheat allergy affects less than 1/2 % of population.
Intolerance's are much more common than true food allergies but are harder to diagnose. Food intolerance is an adverse reaction to food that does not involve the body's immune system. Generally food intolerance is an inability to properly digest certain foods. In some cases food passes right through the body before digestion is complete.
Leaky Gut is an increase in permeability of the intestinal mucosa to luminal macromolecules, antigens, and toxins associated with inflammatory degenerative and/ or atrophic mucosa or lining. Put more simply, large spaces develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream. Leaky Gut Syndrome has also been linked with many conditions, such as: Celiac Disease, Multiple Sclerosis, Fibromyalgia, Autism, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Eczema, Dermatitis, and Ulcerative Colitis.
Celiac disease is an autoimmune disease caused by an inappropriate immune response to dietary proteins found in wheat, rye, and barley (gluten and
gliadin). This response leads to inflammation of the small intestine and to damage and destruction of the villi that line the intestinal wall. These villi are projections (small folds) that increase the surface area of the intestine and allow nutrients, vitamins, minerals, fluids, and electrolytes to be absorbed into the body. When the villi are destroyed, the body is much less capable of absorbing food and begins to develop symptoms associated with malnutrition and malabsorption. When the body is exposed to the gluten and gliadin proteins, it forms antibodies that recognize and act against not only the grain proteins, but also against constituents of the intestinal villi. As long as the patient continues to be exposed to the proteins, he will continue to produce these autoantibodies. Celiac disease is found throughout the world but is most prevalent in those of European descent. It can affect anyone at any age and is more common in women. It is thought to be an inherited tendency that is triggered by an environmental, emotional, or physical event – although the exact mechanism is not fully understood.
According to the National Digestive Diseases Information Clearinghouse, about 5 to 15% of close family members of a celiac disease patient will also have the condition.
Symptoms
There are literally dozens, if not hundreds, of symptoms of gluten intolerance. It all comes down to inflammation in the body! Many people believe the most common symptoms are gastrointestinal in nature - yet the majority of people with gluten intolerance (and celiac disease) have extraintestinal symptoms.
The most common symptoms of celiac disease include:
• Fatigue
• Addison’s disease (hormonal disorder)
• Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, reflux)
• Headaches (including migraines)
• Infertility
• Mouth sores
• Weight loss/gain
• Inability to concentrate
• Moodiness/depression
• Amenorrhea/delayed menarche (menstrual cycles)
• Bone/joint/muscle pain
• Dental enamel hypoplasia (dental enamel defect)
• Short stature
• Seizures
• Tingling numbness in the legs
The “cure” is a life long gluten free diet.
Making the Transition
1. Have a reality check. Remember this is a choice! If you want to feel lousy for the rest of your life and get worse as time goes on then continue eating gluten. If you want to start on a journey to heal; go gluten free!
2. Give it time. It takes time to heal. Take the 45 day challenge.
Within this time frame you will notice the brain fog is gone. Your body will start adjusting to a healthy weight. Yes, you will lose the bloating and weight around the middle. Don’t be discouraged if it takes a little longer to feel 100%.
3. Look at your current diet and go through your pantry and refrigerator to find the foods and meals you already eat that are gluten-free. You may need to keep a food journal if you haven't already.
Be sure to list condiments, ice creams, produce, snacks, and other foods.
This list will be helpful as you create menus around your new foods and give you encouragement that you're already on the right track!
4. Give yourself permission to eat things that you may have restricted from your diet before your diagnosis. Potato chips or GF cookies may not be appropriate for other people, but they are a treat in a GF diet in small doses of course. You will need to find treats for yourself initially as you adjust to this diet. Count calories after you are comfortable with your new way of eating, manage your portions instead.
Once you are comfortable with the switch start cutting back on refined grains, crackers, breads, etc., to help the gut heal quicker. In all honesty, bread will not be that important. It's all about taking baby steps!
5. Look at your current menus and meals and find ways to eliminate gluten from your diet. Replace bread in sandwiches with GF bread or green leaf lettuce and add your favorite fixings and condiments. Have breakfast burritos with rice tortillas instead of toast and eggs. Look for GF hot and cold cereals (must not have barley malt) and have those handy for a snack or meal. Replace bread and crackers with tortilla or corn chips, brown rice cakes or popcorn. For example, chicken or tuna salad on rice cakes or scooped onto corn chips is delicious. Popcorn is a filling side dish with soup. Be on the lookout for meals on your current menus or the menus of friends and family that are naturally gluten-free (roasted chicken, baked sweet potatoes and steamed veggies, for example) and make them a staple on your new menus. Surf the internet, watch cooking shows and browse magazines for ideas and adapt them as you see fit.
6. Clear out any and all foods that have gluten, wheat, wheat flour, oats, oat flour, rye, semolina, or modified food starch from your pantry. This will allow you to see how close you are to living gluten-free already. If you have family members living with you who are not gluten free, you might consider giving the "offending edibles" to them to be put in another part of the house while you learn to live and think gluten-free. As time goes on you can cook for the entire family without gluten.
7. Plan and prepare your meals ahead of time. Being caught hungry without a plan is not a good idea! Keep a few GF soups on hand in case of extreme hunger. Keep a small cooler in your car with snacks such as nuts, dried fruit and water. It helps to outline and pack any meals you're eating at home and away from home, including snacks. An example could be -
o Breakfast: scrambled eggs and mixed vegetables rolled in a rice tortilla, sliced apples, and coffee.
o Lunch: Lettuce with turkey, avocado slices, tomato, and mustard, 1 oz. chips, and 2 organic dark chocolate pieces.
o Dinner: Grilled fish or chicken with mixed vegetables, wild rice, and fruit.
o Snacks: 1 oz. almonds and popcorn.
o Desert: Coconut Ice Cream or fruit.
Tips
1. Be patient with yourself. You'll have days when being gluten-free is really depressing (maybe even "fall off the wagon"). This is normal.
Relax – it’s a process.
2. Carry snacks with you wherever you go. It's often difficult to find an appropriate snack when the hunger strikes. GF bars are great!
3. Arrange with the hosts of gatherings you may attend to bring your own sides or complete meals. Most people are very supportive of restricted diets.
4. Carry a small cooler in your car with small cold packs to store fruit, snacks and water.
5. Consider avoiding restaurants during your transition phase as you learn how to eat and think gluten-free. Grilled meats (over a flame), baked potatoes and salads without croutons are usually safe bets. But keep a log of places you eat, what you ate and how you felt afterward. Gluten is insidious and can turn up in the oddest places (french fries, for example which can be dusted with flour).
6. Get your hands on cookbooks or start collecting your own recipes in a binder.
7. Carry digestive aids (enzyme and bioflavonoid) with you in case of accidental ingestion. There are ones specifically for gluten such as GlutenFlam by Apex Energetics; available from your healthcare practitioner.
8. Consider taking a multi-vitamin to make up for vitamins and minerals you may lack with your new diet (ask your doctor or nutritionist if necessary).
9. Find a mentor or support system.
10. Breathe
About the author: Sandi Star, CCN
Sandi is the founder of Karmic Health, specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial; working with celiac, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on understanding of many health issues and has dedicated her life in helping others reach their optimal health.
For more information related to this article please visit www.karmic-health.com or contact Sandi Star at 760.685.3154
© Copyright Karmic Health 2010