GFCFSF

What is gluten?

Gluten is a mix of proteins found in seeds and grains (ex. wheat, barley, rye). Gluten provides structure and acts as a binding agent in baked goods.  The most common foods that contain gluten: bread, cereal, pasta, flour, donuts, prepackaged sauces and mixes, vitamins, lotions, glue, toothpaste, gum, play-dough and lip balm. Be careful of things like chips and fries that are dusted with wheat flour (gluten) during processing but not listed on the ingredient list.  Common ingredients that contain gluten: barley, bread flour, bulgur, chorizo, couscous, croutons, enriched flour, gum base, malt, miso, MSG (made outside USA), rye, seitan, soba noodles, soy sauce, spelt, teriyaki sauce, wheat, white flour.  For a full list please see resources below.

What is casein?

Casein is a protein found in products containing dairy or lactose (found in all mammals’ milk). It can also be found in foods that claim to be dairy-free or lactose-free, and soy-free products. The most common foods that contain casein: milk, ice cream, sour cream, butter, cheese, yogurt and some lunch meat. Common ingredients that contain casein: artificial butter, butter, buttermilk, condensed milk, cottage cheese, cream, custard, ghee, half & half, hot dogs, lactose, magnesium caseinate, malt, nougat, pudding, sausage, whey. For a full list please see resources below.

What is soy?  Why would you eliminate soy too?

Soy is a legume that is grown and chemically processed (most are genetically modified and treated with herbicides). Soy contains phytoestrogens that may play a role in breast cancer, and there are claims that raw soy can cause pancreatic cancer in rats. The most common foods that contain soy: soy sauce, soy oil, miso, veggie burgers, edamame and tofu.  Common ingredients that contain soy: gum arabic, bulking agent, emulsifier, guar gum, lecithin, MSG (monosodium glutamate), protein, stabilizer, starch, vegetable broth.

The many theories of a GFCF Diet

One theory behind a gluten free (all food containing gluten found in wheat, barley, and rye), casein free (found in milk and dairy products) diet, is that the child has an allergy or sensitivity to foods containing gluten and casein.  The theory also says that the peptides and proteins are processed differently from foods containing gluten and casein, in kids with autism.  Some theories go on to say the brain reacts differently from the proteins, causing different behavior.  Bottom line, there is not enough medical research and scientific evidence to support the diet.

Another theory according to the Autism Awareness Centre, “I had read a possible theory that the reason why foods containing gluten and casein, found in dairy products, are hard to digest for autistic children is because they are often functioning in an over-stimulated state. This over-stimulated state directs the blood flow out to the limbs for the “flight or fright” mode away from the digestive track making hard to digest foods like gluten and casein even more difficult to break down.  Even though this is a theory, it made sense to me because my son was tested for allergies and all of the foods that bothered him did not show as an allergy.”

A third theory from Autism Speaks, “The theory behind its use in autism is that if a person is having GI responses to these products, the resulting inflammation may damage the lining of the intestine and, so lead to absorption of molecules that are not normally absorbed by healthy intestines.  Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities, mental difficulties and perhaps worsen the behavioral symptoms of autism.”

The Association for Science in Autism Treatment provides some more data on these theories. “Food restriction as a strategy for changing behavior is not new, with research dating back to the 1920s. The “opioid-excess theory” (Panksepp, 1979) or “leaky-gut syndrome” (Shattock & Whiteley, 2002) has been one of the predominant conceptualizations supporting the role of food and diet in autism symptomology. Panksepp (1979) proposed that symptoms of autism may be due to excessive opioid activity. Shattock and Whiteley (2002) proposed that children with autism have abnormal leakage from their gut (due to increased intestinal permeability). Both gluten and casein are broken down in the gut into compounds with opioid properties. Therefore, some suggest that the abnormal leakage from the gut allows the opioids to pass into the central nervous system and produce increased brain opioid activity and ultimately, disrupt brain function (Christison & Ivany, 2006). Much of the research surrounding the biological connections of gluten and casein and autism symptoms stems from an article by Wakefield and colleagues (1998) in which the authors suggested three potential environmental links to autism: 1) a potential link between behavior abnormalities and variations in gastrointestinal functioning, 2) a potential link between autism and the Mumps, Measles, and Rubella (MMR) vaccination, and 3) a potential link between autism and a deficiency in vitamin B12. However, due to undisclosed financial interests of the authors, significant inaccuracies in the paper, and what eventually was shown to be deliberate fraud, Wakefield and colleagues were found guilty of ethical violations and scientific misrepresentation. The findings of the research were eventually rejected and the article was pulled from the journal.” To read more research go here – https://asatonline.org/for-parents/becoming-a-savvy-consumer/gluten-free-casein-free-diets/

ASAT goes on to say there is no scientific link between ASD and GFCF diets.  However they do say that “If individuals with ASD do indeed have increased opioid levels and increased intestinal permeability (the combination of which may lead to a disruption in brain function), then eliminating food with opioid properties should decrease opioid levels and, in turn, eliminate or at least decrease disruption in brain function.”

We will go into further detail on the theories with discussion on the Gut/Brain connection and Leaky gut. 

Research to back up the GFCFSF diet

ASAT does acknowledge that the support of the GFCF diet comes from clinicians, parents and educators which is based on self-reporting, no clinical research.  However…

Dr Harumi Jyonouchi’s research shows 65% success on GFCF diet and 91% success on GFCFSF diet, of people with ASD saw improvements. Dr Jyonouchi’s research showed anecdotal evidence of children who “came out of the fog”, began to talk and increased their speech.

Penn State did a study recently surrounding the GFCF diet and the improvements in behavior and psychological symptoms.  “The research is the first to use survey data from parents to document the effectiveness of a gluten-free, casein-free diet on children with ASD. Research has shown that children with ASD commonly have GI [gastrointestinal] symptoms, said Christine Pennesi, medical student at Penn State College of Medicine. Notably, a greater proportion of our study population reported GI and allergy symptoms than what is seen in the general pediatric population. Some experts have suggested that gluten- and casein-derived peptides cause an immune response in children with ASD, and others have proposed that the peptides could trigger GI symptoms and behavioral problems. The team which included Laura Cousino Klein, associate professor of biobehavioral health and human development and family studies asked 387 parents or primary caregivers of children with ASD to complete a 90-item online survey about their children’s GI symptoms, food allergy diagnoses, and suspected food sensitivities, as well as their children’s degree of adherence to a gluten-free, casein-free diet. The team’s results appeared online this month in the journal Nutritional Neuroscience.”

“Pennesi and Klein and their team found that a gluten-free, casein-free diet was more effective in improving ASD behaviors, physiological symptoms and social behaviors for those children with GI symptoms and with allergy symptoms compared to those without these symptoms. Specifically, parents noted improved GI symptoms in their children as well as increases in their children’s social behaviors, such as language production, eye contact, engagement, attention span, requesting behavior and social responsiveness, when they strictly followed a gluten-free, casein-free diet. According to Klein, autism may be more than a neurological disease it may involve the GI tract and the immune system.” (For full article use source below, Dr. David Perlmutter) 

We will discuss more about this brain/gut connection in a separate guide.

What to eat on a gluten free/dairy free diet?

The scariest part of starting the gluten free/dairy free diet, what will I feed my son/daughter? Especially if you have a “picky” eater.  Look for replacing their favorite foods with gluten/dairy free options. Check labels. There are often hidden sources of gluten and diary in items such as; soup mixes, batter-fried foods, and baked goods.  Check food labels for the Gluten-free/Dairy-free/Soy-free labels.

To substitute gluten products, consider the following:

• Corn flour
• Potato flour
• Quinoa flour
• Rice flour
• Almond flour
• Buckwheat flour
• Casava flour
• Coconut flour
• Cornmeal
• Tapioca starch

To substitute dairy products, consider the following:

• Almond milk (variety of choices; plain, vanilla, chocolate)
• Cashew milk
• Coconut milk
• Hemp milk
• Rice milk
• Hazelnut milk

Oil and butter substitutes: Coconut oil/butter, Earth Balance Natural (Soy-free, pinkish container)

How to implement a GFCFSF diet.

First thing first mama, take a deep breath.  This is going to be a marathon, not a sprint.  Give your self grace during this process. I have read a lot of opinions on the diet and the best advice I read was to make the commitment to the GFCF(SF) prior to starting.  Know it is going to be hard but you got this.  You are stronger than you think! You are not hurting your child, as much as it may see at times, you are working hard to help them in the long run.

I love this from I’m Simply a Dad, “..when you decide to start the GFCF diet, make sure you have reasonable expectations for the diet. Yes, it is true that some kids improve dramatically after starting the diet. Sadly, that is not the norm. I’m certain you will see some progress after your initial 6 month commitment. Maybe your kid is simply sleeping a tiny bit better, or having more regular bowel movements. That’s a big help for you kiddo and will help them feel better. If they feel better, they’ll do better in other areas too. The goal with diet is to ease the burden on the body and help them be ready for progress.”

Step 1: Grab a notebook and start some lists.  Create a list of current foods your child is eating.  A list of symptoms and behaviors being exhibited (diarrhea/constipation, frequency, etc.) You may even consider keeping a food journal for a few days to a couple of weeks while you start gathering recipes for step two, or identifying ready made food recommended by other parents.

Step 1b: You may consider doing testing for your kiddo prior to starting the diet if you would like to know if he/she has any existing allergies.  Or to establish a baseline.  Recommended tests include: IgG and IgE food allergy blood tests.  Note: If your child is like mine, a blood test is not an easy feat and you may decide it is not worth waiting to do the tests to start.

Step 2: Identify some key recipes that can supplement for your child’s preferred foods. Head to your local health food store (Whole foods is great) and do some shopping.  Please note, it will take you time on your first trip so leave the kids at home if you can.  Read labels, ask staff for locations of products. Food labels by law have to identify the food source of all major food allergens.  It will appear in parentheses following the name of the ingredient – “lecithin (soy),” “flour (wheat),” and “whey (milk)”.  Or, immediately after or next to the ingredient list – “Contains Wheat, Milk, and Soy”. 

Step 3: Commit to the diet and remove gluten, casein and soy products from your home.  Or from the food your child will be eating if the whole family is not following the diet. (You may consider to start doing it as a household, this will alleviate a lot of stress on you mama.)  NOTE: If you pull all gluten, casein and soy at once, there is a slight risk of seizures for very sensitive kids. From I’m Simply a Dad, “As gluten and casein can potentially be broken down into an opiate-like compound, very sensitive kids can become “addicted” to these foods. Thus detoxing from both gluten & casein at once can have a similar reaction as one detoxing from heroin. Having said that, this is very rare, but something you should be aware of if taking this approach.” If you choose to phase out one at a time, the six month period will start when all three (gluten, casein, soy) have been removed from the diet. But start tracking from the start of your process, it could reveal things to you at the end.

Step 4: Spend some time making things your child will enjoy to ease them through the transition.  Or see sample substitutes below.  It may be beneficial to use a substitute of a favorite food as you are trying to persuade to try another food, as reinforcement. If it is an unhealthy food it can be phased out later when there are more food options.

Step 5: Get out your notebook and start keeping a food journal.  Record the foods, beverages and responses.  Along with any changes to symptoms and behaviors.  You will want to do this through your whole journey (I recommend a 6 month trial based on research findings).

Step 6: Supplements.  I will not provide recommendations for needed supplements for your child.  Please, at the consultation with your physician prior to starting the diet, discuss the need for supplements while on the diet and/or based off the results of your blood tests.

Tips for a GFCF lifestyle:

• ALWAYS consult your child’s physician before making dietary changes. Consider also consulting a nutritionist for assistance.
• Notify anyone and everyone about the diet.  Best put, tell them not to give any food that hasn’t been provided by you.
• Remove all favorite foods so they are not a temptation for your child.
• Make larger quantities and freeze a portion.
• Vegetarian and Vegan restaurants are typically more willing to adhere to strict GFCF restrictions.
• Keep a list of the benefits you are seeking and a list of where you are now (diarrhea/constipation, how frequently, what is currently eaten) so you have a baseline for comparison.
• Keep a food log, track everything eaten and what symptoms occurred.
• A trial of 2-3 months minimum is suggested. Some report seeing changes around 4 months.
• From Nourishing Hope, “When beginning a GFCF Diet, be careful not to introduce too many GFCF junk foods such as cookies, candy, and chips. Even though they don’t include gluten or casein, the sugars can feed yeast, imbalance blood sugar, and dis-regulate energy.”

Next steps:

If you are working with a biomedical professional, they will tell you the next step is to transition to a fully organic GFCFSF diet.  Organic foods are not treated with chemicals or preservatives, not genetically modified, and raised humanely.  Organic meats do not contain hormones, preservatives, or fillers.

Recipes/Foods Recommended:

• Baked Egg in Avocado – https://www.allrecipes.com/recipe/240744/paleo-baked-eggs-in-avocado/ 
• GF Goldfish Crackers (Need to substitute dairy-free cheese in) – http://www.thankyourbody.com/recipe-all-natural-gluten-free-goldfish-crackers/  OR https://www.naturespath.com/en-us/recipes/vegan-gluten-free-goldfish-crackers/ 
• GF crackers and hummus – https://www.thespruceeats.com/homemade-gluten-free-hummus-1450872 
• Guacamole and GF chips – https://www.thespruceeats.com/gluten-free-homemade-guacamole-recipe-1450853 
• Cinnamon roasted nuts – https://glutenfreehomemaker.com/roasted-cinnamon-nuts/ 
• Frittata – http://realglutenfreemeals.com/organic-gluten-free-dairy-free-breakfast-frittata/ 

Sample Starter Food swaps:

• Chips > Organic corn chips or GF Chips
• Frozen pancakes > GF frozen pancakes > Homemade GFCFSF sugar-free pancakes
• Soy sauce > Coconut Aminos
• Pasta > Quinoa pasta or rice noodles
• Couscous > Quinoa
• Croutons > Toasted sunflower & pumpkin seeds
• Sandwiches > Corn tortillas (check label some include wheat flour)
• Breadcrumbs > Linseed/Flaxmeal (or almond meal)

Mom opinion – So there is no scientific research to say that a GFCF diet will improve symptoms of ASD.  However, what I saw in the research suggests small test groups, and the period of the diet may not have been sufficient. (Remember just my opinion.) As we all know, each child with autism is different so… I am willing to try things that are not harmful to my child, to improve his quality of life.  If starting a GFCF Diet is done in an organized way to determine if, gluten, casein or soy elimination, can improve brain function than why not?  Lastly, changing a diet is something that is within my control, I can’t be at the therapies, so this is what I can do at home.