This great essay on the gluten-free, casein-free (GFCF) diet is posted with permission from the author, Anna Letaw. Anna is a fellow GFCF mom and is the one who actually introduced me to the GFCFKids Yahoo group.
Check out Anna Letaw's new blog, Free-Mealer.
Gluten-Free/Casein-Free Diet: An Essay
By Anna Letaw, 2008
A diagnosis of Autism, Pervasive Development Disorder (PDD) or any of the Autism Spectrum Disorders (ASD) comes with a mixed bag of relief, sorrow and overwhelming research. Doctors, Therapists, Programs, Supplements and Diets, the list seems never ending. And just when you think you’ve had enough, something else crops up: a new behavior, a call from the school or another illness followed by another round of medications.
The GF-CF Diet is an opportunity for relief. Maybe not like ‘going-on-vacation-in-the-Bahamas-by-myself’ relief, but ultimately, a change for the better. Like everything else Autism-related, there is a learning curve and there are no guarantees, but, the greater majority of those who try it for their children, find improvement. Sometimes it’s only a little, sometimes it’s drastic but most would agree that even a little, is better than nothing and every movement forward has to start somewhere.
What is The Diet and why do it?
Gluten and Casein are proteins found in Wheat and Milk respectively. The theory is that the removal of these two ingredients from the diet of Autistic children or children on the Autistic Spectrum, stops the peptides from escaping the gut, which helps begin the process of healing the brain, allows the bowels to begin healing and helps eliminate stress on the immune system. The Gastrointestinal, Neurological, Immune, and Toxicological Systems are the most commonly affected in Autistic/ASD children. Because they are so interconnected, a failure, or assist, in one can affect them all. The diet it just one part of the solution to the Autism puzzle.
Children, and adults, on this diet tend to demonstrate improvement in eye-contact, thinking, focus, language acquisition and usage, hearing, cognition, normal bowel movements, greater awareness of their surroundings and a reduction in illnesses. Just how much change and progress you can expect to see in your child is too hard to determine in advance as changes and progress are varied and individual to the child, and only as good as the dietary practice.
What is Gluten & Casein?
ASD children tend to be intolerant - not necessarily allergic - to Gluten (wheat) and/or Casein (milk). In simple terms, in normal functioning bodies, the peptides of these two items: Gliadorphin and Casomorphin are derived from, respectively, the wheat and milk proteins and are typically broken down in to smaller amino acids during the digestive process and absorbed or eliminated. However, in most Autistic/ASD children, this breaking down into the smaller amino acids does not occur and instead, the peptides leak through tiny perforations in the gut, cross the blood-brain barrier and enter the brain. In peptide form, gluten and casein act as opiates, similar to morphine, in the brain. Thus children often appear to be “in their own world” and seem to not feel pain. Like any addict, Autistic/ASD children who are intolerant to these, tend to self-limit to these foods so they can continue to get their "high". For some, the fixation on the "offending" foods can be obsessive and some will throw tantrums if they don't get it, or until they get it.
What does it have to do with Autism /ASD?
This ability of the gut to "leak" the peptides is called "leaky gut" and exacerbates the symptoms of Autism and ASD and in time helps create a vicious cycle. Children, in their ‘drugged’ state, continue to self-limit, this poor nutrition affects their immune system, which in turn affects their toxicological system, thus setting up the gut for continued membrane permeability and on the cycle goes.
What can the diet do for your child?
Changing to a GF/CF diet begins to stem the tide of cascading, systemic failure. By removing the offending foods, the gut can begin to heal. Once the healing starts to take place, foods are better digested and nutrients properly absorbed. This means the body, with the aid of supplements, can begin to replenish its severely depleted store of vitamins and minerals. The brain can begin to function better allowing children to find their language, gain and maintain eye contact, diminish stimming and self-abusive behaviors, to name a few. Because the stress of poor food and nutrition has been replaced, the immune and toxicological systems can now spend their time fending off viruses and eliminating them and other environmental toxins instead of dealing with the inflammation from the offending foods. Much to the relief of parents, a child’s selection of foods generally begins to increase, providing even greater means of better nutrition.
Allergy vs. Intolerance
Allergy and intolerance are two different conditions. In simplistic terms, an allergy sets off an immune response and responds to an anti-histamine treatment and is generally detected using an IgE blood test; an intolerance makes the person feel bad and is detected using an IgG blood test. It is important to note that one can be intolerant to wheat, but not have Celiac Disease. Still, it is important to rule out Celiac and it is wise to have the blood test done for it before you remove wheat from the diet.
The odd thing about these intolerances is that the child often desires the very food that makes him or her ill. (The opiate effect.) Most common, is the fact the child will self-limit his/her food choices. Often he/she will not eat anything, or eat very little, outside the offending ingredient; is very insisting for that particular food; will throw tantrums when they do not get the food.
The most common offending ingredients are wheat, milk, soy, corn, eggs, nuts and shellfish.
How do I do the diet?
How attached a child is to a particular food may help you decide whether to ease into the diet or do it all at once. The greater the addiction, the easier it may be to do it all at once. Doing it gradually means the child stays in withdrawal longer and that means his or her behavior can be unmanageable until you completely eliminate it. Though the shock of suddenly going cold turkey may be very difficult. There is no particular right or wrong way to do it, it’s whatever suits you and your child best.
In general, it is recommended that you start by removing Casein as that takes a shorter amount of time to get out of the system. Once the child is totally casein free, improvements should begin to happen within a few days. This is generally enough encouragement for the parent to keep the child on the diet.
So what about the argument that “My child will NEVER go for this.” “All he eats is Mac and Cheese, Chicken Nuggets, [insert any wheat and milk product here]. What will he eat if I take that away?” I guarantee you that not only will your child eventually come around, his/her diet will begin to expand. I have read accounts of parents whose children rebelled and ate nothing for DAYS! Once they worked through the withdrawal, they were eager to eat and did so with little to no complaint.
If you prefer the gradual method, start by serving half milk, half substitute milk and gradually increase the substitute. Alternative ‘milk’ forms are Rice, Almond, Hazlenut, Hemp and Dari-Free which is a potato-based milk. Most of these come in a regular, vanilla, chocolate and/or low-fat version. Watch for the sugar content in these as some are quite high. Beware, too, that some are not gluten-free.
Take one meal at a time and make substitutions. There are lots of mixes and prepared foods available, much to a busy Parent’s relief. You’ll soon find that there are substitutions for just about anything your child currently eats. Cheese is still a tough one and veterans of the GF/CF diet bemoan this one ingredient. It helps to think “substitute” rather than “eliminate” when it comes to this diet. It also helps to think “out of the box”.
What about the Soy substitution?
Many on The Diet choose to keep this ingredient out of their diet. The proteins in Soy are very similar to Milk and a child who has an intolerance to milk, often has an intolerance to Soy. It may be best to start Soy-Free as well, then when you have been completely Casein-free for awhile, try Soy and see if there is any reaction. It may be that your child will tolerate it, may only tolerate a little, or perhaps not at all.
Think “Rotation”
When going Gluten Free, it is common to replace offending grains with rice substitutes. As most of you already know, rice is one of the foods to give when your child has diarrhea so you can imagine how your child might fare if his/her diet is suddenly changed to Rice milk, rice noodles, rice cheese, rice snacks, rice bread, rice cereal…need I go on? The best thing for the body is variety so change your ‘milks’, introduce new grains and be on the lookout for adding fiber to the diet.
Things to look for
Constipation is a frequent complaint for our children, however, most have found relief when adopting this diet. Still, as with any dietary change, problems can occur. As I mentioned, be sure to vary your child’s diet so their system can function properly. Fruits, vegetables and added fiber help. So does added Flaxseed Meal, Vitamin C and Magnesium in the Citrate form. As with anyone, a balanced diet goes a long way towards smooth functioning. The longer your child is on this diet, the greater their ability to tolerate and accept new foods.
The craving/obsession with a particular type of food is generally a sign that your child has found another intolerant ingredient. Try eliminating that ingredient and see if the behavior improves.
Cross-Contamination can create problems for children. This occurs when a food product shares a processing line with another food that contains an intolerant ingredient and the line has not been cleaned properly.
What if there is no change in your child? Is the diet really working?
There are a small percentage of children who for whatever reason, do not respond to this diet. However, before you determine your child is one of those, go back through your foods, supplements and environment and make sure everything is ‘clean’. Meaning, make sure you are truly GF/CF. Often the ‘failure’ of the diet is due to a cross-contamination, a hidden ingredient, not understanding how the diet works, cheating (knowingly or unknowingly), or an allergy/intolerance you were not aware of.
Make sure you understand that gluten-free doesn’t mean just removing wheat from the diet, and that ‘casein-free’ is not the same as ‘dairy-free’. Make sure your child isn’t sneaking any offending foods, or being fed offending foods from others and make sure the foods you are giving are ‘clean’ (free of cross-contamination). Also, it is common for other intolerances to appear once the gut is free of gluten and casein. As well, yeast/parasites tends to be a problem for a lot of our children and can often cause regressive symptoms so be sure to rule that out as a cause for no change.
Nutrition/Supplements
One of the greatest concerns about this diet is the removal of common sources of calcium and protein. Be sure your child is being supplemented with all the necessary vitamins and minerals and they are getting enough protein at each meal.
Doctor or no Doctor?
It is not the purpose of this essay to say whether you should use one or not. There are probably as many who use one as don’t. Do your research and make a decision based on what’s right for you and your family.
Finding it in the most unusual places
Casein and Gluten is found in many unusual places and forms so be sure to read the list of ingredients and that you understand what the contents of the ingredients are. There are lists out there that can help you determine whether an ingredient is ‘legal’ or not. Most products have a number that you can call and talk to someone about whether or not it is gluten/casein free. Some questions to ask:
• Does it contain Gluten and/or Casein?
• Does the food share lines that produce foods that contain gluten or casein?
• How do you clean your lines?
Things to watch for at School: art supplies: crayons, markers, playdough, paint, colored pencils, glue, hands-on instructional materials, treats from other kids, trading lunches, food treats from the teachers.
Other things to consider at home: lotions, soaps, cleaning products, sunscreen, wipes, medications, supplements.
Restaurants: Cross-contamination can be a big problem here. Though a product may seem GF/CF, it may not really be. For example, a grilled chicken breast seems safe enough, but, what is it’s source? Is it injected with a solution? What’s in that solution? Was the grill clean? Did they use a clean utensil when cooking? For many, it’s just easier to bring your child’s food. Every restaurant we’ve been to since being on the diet, has been understanding and accommodating. I just explain that she’s on a restricted diet and have brought her own food.
Permanent or Temporary or Enzymes?
It can be overwhelming in the beginning to think that all this turmoil and upheaval in the routine will be permanent. However, as you and your child adjust to the changes and you begin to learn how your child responds, it will become second nature. As the gut begins to heal, it is very likely your child will be able to tolerate some of the previously offending foods, especially when given enzymes. However, it would be advisable to wait a year before attempting to do so. It takes wheat about that long to completely clear the system.
Some children benefit from chelation, the process of removing the heavy metal burden from the body and from which so many of our children seem to suffer. Once those are removed, the body is able to go back to functioning properly, or as properly as possible, and thus be able to accept new foods and not be quite as dependent on the supplements.
Enzymes are proteins that aid in breaking down foods. Different enzymes help break down different kinds of food. Often our children are lacking in them, or don’t make enough, and the addition of these helps their body efficiently break down the food. Sometimes adding them is enough for a child to not have a reaction to a food.
What about Other diets?
For some, being Gluten and/or Casein-Free is not enough and adding the concepts of these diets may be helpful:
The Feingold Program
The Specific Carbohydrate Diet
The Candida Diet (Yeast-Free)
Where do I go for help?
There are plenty of resources available. These are just a few that people following the GF/CF diet have found helpful along the way. Most, if not all the books can be found at your library:
Books (In alphabetical order)
Breaking the Vicious Cycle: Intestinal Health Through Diet
by Elaine Gloria Gottschall Changing the Course of Autism: A Scientific Approach for Parents and Physicians
by Dr. Bryan Jepson with Jane JohnsonDangerous Grains: Why Gluten Cereal Grains May Be Hazardous To Your Health
by James Braly and Ron HogganEnzymes for Autism and Other Neurological Conditions
by Karen De Felice“Guide to the GFCF diet for Autism and ADHD" by Luke Jackson
Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies
by Dr. Kenneth BockSpecial Diets for Special Kids (I)
and Special Diets for Special Kids (II)
by Lisa LewisThe Gluten-free Gourmet
by Bette HagmanThe Kid-Friendly ADHD and Autism Cookbook
by Pamela Compart, MDThe Yeast Connection: A Medical Breakthrough
by William G. Crook, M.DUnraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery
by Karen SeroussiWhat Your Doctor May Not Tell You About Children's Vaccinations
by Stephanie Cave, MDSites (In Alphabetical Order)
Autism Network for Dietary Intervention
Autism Research Institute
ARI: Leaky Gut
ARI: DAN Doctors List
Dana’s View
General guide for GF/CF foods and products
Generation Rescue
Kids and the Specific Carbohydrate Diet
Online Forum for parents of GF/CF Kids
Specific Carbohydrate Diet Recipes
Talk About Curing Autism Now has a 10 week plan to going gf/cf
TACA: GFCF School Supplies
The Gluten-Free/Casein Free Diet
© Copyright 2007 by Anna S. Letaw
For permission to reprint please contact: annaletaw@comcast.net
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