Progress in Autism Treatment Through Gluten-Free/Casein-Free and Specific Carbohydrate Diet

January 20, 2008 at 8:58 pm 11 comments

Angela recently submitted this question following a post on the Gluten-Free/Casein-Free Diet and Specific Carbohydrate Diet.  My response follows:

“I would like to know what kind of results you saw in your child and how soon after starting this specific diet did you notice them. I am just now looking into this diet for my son and am trying to navigate my way through. Not sure where/how to start!

Thanks –

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  • 2. acttoday  |  January 19, 2008 at 11:49 pm

    Hi Angela,

    Thanks for your question. I noticed improvements within a week of starting the Glutenfree/Casein-free diet. The first improvement I saw was that the red rashes and hives that had previously been all over his body were gone! A week or so after that, I noticed improvements in his behavior and fewer food cravings and aversions. I also noticed less “stimming” and obsessive behavior.

    We maintained the Glutenfree/Casein-free diet for some time before beginning the Specific Carbohydrate Diet (SCD) as well. I noticed improvement from the SCD within three weeks. First, I noticed positive change in my son’s digestion and also elimination. Next, I noticed improvement in my son’s ability to handle frustration. The SCD also normalized my son’s blood sugar – he now no longer has blood sugar crashes if he doesn’t eat every two hours. He can safely go for longer periods without eating and still be focused and happy. Also, my son’s cravings for something sweet have diminished. Overall, I feel the progress from both the GF/CF diet and the SCD was quickly noticeable and have been extremely pleased with the healing which has come from both of these diets!

    As far as how to start – check out the book “Special Diets for Special Kids, Two” by Lisa Lewis. In the meantime, you can get started by eliminating all forms of milk from your child’s diet. A few weeks later, you can gradually begin removing the gluten-containing grains, maybe one at a time. Try some of my recipes posted on my blog, along with other recipes in place of your child’s favorite.

    I took a hard and fast approach with it and eliminated all gluten and casein at once, but many parents prefer to use the gradual approach by elimating one item at a time.

    On the Specific Carbohydrate Diet, the best book to start with is “Breaking the Vicious Cycle” by Elaine Gotschall. You may possibly want to consider doing the GF/CF diet for some time first before considering the SCD. And, I need to be clear about a very important point – the SCD does incorporate certain homemade cultured milk items, which we do not do, since I personally see the necessity for remaining casein-free.  The book explains that  some children can tolerate the homemade cultured milk items, I know that my son cannot.  I feel that out of an abundance of caution, it would be better to be safe and exclude the cultured milk products.   

    The best way to approach any dietary changes for your child is for you to read, read, and read some more. I applaud you for researching this topic and being willing to do what it takes to help your child! Be encouraged!

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    Gluten-free/Casein-free Snack Time Recipes Evidence Supporting Nutritional Supplements in Autism Treatment

    11 Comments Add your own

    • 1. kathy  |  January 29, 2008 at 4:24 pm

      I was considring putting my 5 yr. old on medication for severe temper tamptrums mostly oyer food . Do you reccomend trying the diet first? I think it will be hard because he is obsessed with food he binge eats.

      Reply
    • 2. acttoday  |  January 29, 2008 at 11:16 pm

      Hi Kathy,

      While I am not a medical doctor and, therefore, cannot advise on any particular child’s case, I have applied a simple principle to my own son’s treatment – if help can be found through dietary changes and nutritional supplements, we always try this first. There is a great deal of evidence supporting dietary intervention for autism spectrum disorders. The Gluten-free/Casein-free diet (look at information on http://www.autism.com), the Feingold diet (www.feingold.org), the Specific Carbohydrate Diet (www.breakingtheviciouscycle.info and http://www.pecanbread.com)

      Let me share our experience with you. Prior to removing gluten and casein from my son’s diet 2 ½ years ago, my son craved Carr’s Whole Wheat Crackers, which he called “soft crackers” and ate them almost daily. We went cold turkey when we started the GF/CF diet and stopped consuming all foods containing gluten and casein at once. For the first three weeks of the GF/CF diet, my son threw fit after fit every afternoon, yelling “soft crackers!!” and throwing himself down on the ground. Then, after three weeks, all of a sudden, he no longer asked for them and no longer threw tantrums! Generally, each time we make a dietary change, it takes a couple of weeks for my son to adapt, and then he is happy with the change.

      Many times, children (and adults too) will crave foods which are problematic, so the cravings for a particular food can be an indication of foods which need to be avoided. Additionally, sometimes particular food cravings can be a sign of nutrient deficiency, so we always make sure to take high-quality vitamin and mineral supplements.

      Yes, change is difficult for children with autism spectrum disorders. However, if we as parents and caregivers of our precious children remain strong, positive, and committed to implementing the change, our children sense our confidence and strength, and, I believe, will adapt more readily.

      Reply
    • 3. cheri turco  |  March 5, 2008 at 11:15 am

      Hi,
      I am wondering if you might be able to help. My son has Down Syndrome and Autism. He has been on a GFCF diet since age 4. Because he does not chew and has some other feeding issues he eats all pureed foods. He has been growing well on a diet of cream of rice cereal, soy yogurt and vanilla pudding, soy milk and baby food fruit. He is now reaching puberty…we have been partially successful in introducing new GFCF foods but he is pretty rigid about what he’ll eat and won’t eat. He is continuing to grow in height but has lost some weight…he is a thin little guy to begin with. We are looking for a supplement to add to his food that is high in nutrients and calories but is of course GFCF. Any ideas? Thank you for whatever help you can give me.
      Cheri

      Reply
    • 4. acttoday  |  March 7, 2008 at 9:30 am

      Hi Cheri,

      I have also had to work to help my son gain weight. First, what we did was to make sure he was getting adequate vitamins and minerals through supplementation. In her book, Children with Starving Brains, Jacquelyn McCandless gives a good list of necessary nutrients along with her recommendations for amounts.

      Another very important consideration is that there can be malabsorption of nutrients when there is gut inflammation or injury to the vili in the intestines. I believe probiotic supplementation is an essential part of healing this inflammation and injury to the gut and helps work toward better absorption of nutrients. The probiotic of course should be gluten and casein free and should have a potency of billions of units. Also, aloe vera juice has helped heal my son’s intestinal tract so that he absorbs nutrients better.

      After ensuring adequate intake of necessary nutrients and working toward healing the gut, we then began making smoothies with protein powder. A note of caution – most protein powders are not gluten-free/casein-free. My son also had a sensitivity to soy, so we use rice protein powder and pea protein powder. Here is my recipe for smoothies:

      Smoothies with Protein Powder

      1 cup fresh or frozen fruit (we like cherries, peaches and blueberries, but use fruit your child tolerates)

      GF/CF rice milk or almond milk or just water

      1-2 Tablespoons rice protein powder or pea protein powder

      Stevia to taste

      Mix in blender until smooth.

      Variations: In addition to the protein powder, you can also add finely ground nuts or flaxseed (grind it yourself in a dedicated coffee grinder – pre-ground flax can be rancid). I also add barley green powder for added vitamins from greens. Although barley is a gluten-containing grain, according to the product I buy, the powder made from the barley grass juice does not contain gluten.

      A Note of Caution – Each child is extremely different in his ability to tolerate particular foods. Certainly if your child has demonstrated an allergy or sensitivity to a food (through either reactions or through testing), the offending foods should be off-limits.

      Blessings!

      Reply
    • 5. Yanti  |  July 1, 2008 at 5:23 am

      Hai, I am yanti. My daughter, 7 years old, autistic girl, not an hyperactive. Should I use the CFGF diet for her? Because as I know, this methode works in an autistic kid with interactive! Thx so much.

      Reply
    • 6. acttoday  |  July 1, 2008 at 8:03 pm

      Hi Yanti,

      I think the best answer is to try the gluten-free/casein-free diet to see if it works! The Autism Research Institute publishes the results of the information they receive from parents on the effectiveness of various biomedical interventions. According to the “Parent Ratings of Behavioral Effects of Biomedical Interventions,” 66% of parents reported that their children “got better” on the GF/CF diet. You can find this parent rating form at http://www.autism.com/treatable/biomed/ARI_TreatmentRatings_Form34QR_February2008.pdf

      I have consulted with and interviewed quite a few doctors using biomedical treatments for autism, and they all say that the GF/CF diet is a must for children with autism and should be the first place to start. It is my understanding that the diet really must be followed very, very strictly for at least 6 months to one year. The reason for this is that the peptides created from the incomplete digestion of gluten and casein actually build up in the bloodstream (and enter the brain) and must be allowed to clear the body. Another reason for following the GF/CF for an extended period of time is to permit the intestines time to heal. Gluten and casein can cause injury to the digestive tract in some children, so it is necessary to completely remove gluten and casein to stop the source of injury and allow time for healing. During this time, can also be helpful to use products that promote intestinal healing and integrity such as high-potency probiotics and colostrum.

      For this reason, I think it is really important to note that this diet really mandates strict compliance. Gluten is not like other things we might keep our kids away from like sugar – even though a lot of sugar is bad for any child, maybe a little bit of sugar won’t hurt too much. Not so with gluten and casein!!! A little bit can be very harmful! For this reason, we use only products that can certify they are gluten-free and casein-free. For example, if a product with generally gluten free grains (such as rice flour) states that it has been produced in a facility that also produces wheat and that there may be trace amounts of wheat, we do not use the product! One doctor I interviewed also instructed me to have a separate toaster for gluten-free breads and another for regular bread to eliminate any cross contamination!

      A note about your question – you stated that your daughter is not hyperactive. My research shows that the GF/CF diet is extremely helpful to children with autism, whether they are hyperactive or not. Many doctors and researchers believe that the peptides formed from the incomplete digestion of gluten and casein travel through the bloodstream and into the brain and attach to the opiate receptors in the brain. This could be why so many parents report that their children seem addicted to wheat and milk products. Many parents also say that as their children begin the GF/CF diet, they act as if they are coming out of a “brain fog.”

      I will admit that the GF/CF diet is extra work – homemade meals, no eating out at fast food restaurants, and always packing a lunch….. However, I believe most parents who try it for their children (and even for themselves!) say that it is worth the effort!

      Blessings to you as you walk strongly forward in this journey!

      “The Lord bless you and keep you; The Lord make His face shine on you, and be gracious to you.” Numbers 6:23-24 NASB

      Just a note – I began the GF/CF diet with my son to be a support to him and have been following the GF/CF diet for almost three years now. I must say that my health has considerably improved as a result. It is now a life-long commitment for me!

      Reply
    • 7. Linda Mason  |  November 7, 2008 at 8:10 am

      I literally had the word gluten come to my mind after an all night crying/praying session. I had never heard of the word except as the contaminant in pet food.

      I did some research and saw that every symptom that my son had could be related to gluten. We immediately removed gluten.

      Within THREE days we saw am improvement in my son’s attitude.

      My husband said this was me too–I, too saw my brain fog and fatigue go away in the same time frame.

      We then noticed that my son and my self later in the week became angry when we had some cheese and milk–so we are eliminating that, too.

      I just hope that the healing time is fast because my son really needs to bring up those 7th grade reports cards for next semester!

      Reply
    • 8. Heartburn Home Remedy  |  April 15, 2009 at 6:47 am

      I can tell that this is not the first time you write about this topic. Why have you chosen it again?

      Reply
    • 9. Resources for Numbers 6:23 - 24  |  March 2, 2012 at 5:21 am

      […] » Third Space1Power of Prayer: Prayer Requests | 40 Days of Lent and Intercessory Prayer1Progress in Autism Treatment Through Gluten-Free/Casein-Free and Specific Carbohydrate Diet « […]

      Reply
    • 10. Maja  |  January 13, 2013 at 5:41 pm

      Hello everybody! I have a 3-year old daughter who has a sensory integration disorder which is similar to autism to some extent. We have been advised to start a GFCF diet as well. It works well for her. But what is far more important is that you do hair analysis so that you can find out what are the levels of mercury, lead and other heavy metals in your child’s body. We have done one and learnt that we deal with a high level of lead and aluminium. Now we are in a process od detoxication. What I would like to share with all of you is how the body can be detoxified in a pure, natural and non-harmful way. There is a mineral called ZEOLITE!!! Once the heavy metals and other toxins are removed from your child’s brain, after 4-6 weeks, you will notic a major change!

      Good luck to everybody!

      Maja from Herceg-Novi, Montenegro (ex-Yugoslavia)

      Reply
      • 11. acttoday  |  January 13, 2013 at 9:45 pm

        Thanks for your comment! I agree that analysis to determine toxicity, as you suggest, is crucial. I will say, however, that the gluten-free/casein-free diet is the foundation for all other therapies. Check out Dr. Richard Frye’s published papers regarding down-regulation of the immune system by milk. There are also many resources that explain the damage that gluten and wheat can do to the immune system. I spend a lot of time reading medical and health information that is targeted toward the non-autism community. The benefits of a GF/CF diet are not merely for the autism community, and this diet is utilized in many conditions and also by wise people who simply want to create better healh for themselves. I don’t have time to provide the links to any articles right now, but can help with this next week if you are unable to find the information.

        Also regarding the Zeolite if anyone decides to try this – I think it is a wonderful product. We’ve used NCD Zeolite. One word of caution for an autistic child (or any sensitive person) – I use ONE DROP in a full glass of distilled water as a starting dose. I believe this product should be used slowly and it can have great benefit. Thanks for sharing!

        Blessings in the new year!

        Reply

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    Autism-Changing Tomorrow (ACT) blog is maintained to provide a place where ideas and thoughts relating to autism and treatments for autism may be exchanged. The information on Autism-Changing Tomorrow is of a general nature and is provided with the understanding that ACT or any individuals or entities associated with ACT are not engaged in rendering medical advice or recommendations. Any information in the postings, messages, articles, comments, and publications in or on the ACT blog must not be considered medical advice or recommendations and such information should not be considered a substitute for consultation with a board certified physician to address individual medical needs.

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