Posts filed under ‘Gluten-Free/Casein-Free & Specific Carbohydrate Die’

Getting Some Sleep! Solving the Night-Waking Problem in Autism

I have tried really hard to erase from my mind the painful memories of years of being woken up in the middle of the night by my son who was born with autism.  He would wake multiple times during the night, every night, with the first time usually being about 1:30-2:00 a.m. – just shortly after I had just fallen asleep.  Three years later, my body is still paying for three years of very little sleep!  I believe it is so important to get to the root of night-waking for our autistic children – so their growing bodies can get the sleep they need, and so that we parents can be rested to take care of them!

Sumio8 submitted the following question regarding night-waking in autism:

“What a wonderful website! Thanks for the resources and invaluable information! Your dedication really is helpful to so many people..I just had to say that.

I do have a question. We recently used Culturelle “dairy free” version and for over a month couldn’t figure out why our son was nightwaking (2am till 6am). We have been GFCF for months and he was exhibiting the same behavior prior to going CF. Unbeknownst to me my friend told me her DAN said it STILL contained casein. I came across a website that claims it has trace amounts (15ppm whatever that means). The day we removed Culturelle he slept through the night (just like when we removed his milk). I find that to be more than coincidental. When I emailed Culturelle the rep reassured me that they send it out to a another company for inspection etc. but I’m not buying it. 4 days later my son is STILL sleeping through the night and the past month he exhibited the same “caseo morphine” high. Thank goodness my friend enlightened me..It really bothers me they are denying it because beyond how it affects my son neurologically, he’s highly allergic to it and has broken out in hives.

Is there a good probiotic you could recommend that is indeed casein free?? Seems like many still have trace amounts.”

Hi Sumio8,  I am glad you found information here helpful!  I am so sorry to hear the problem your son had recently. 

We have never used the Culturelle product (dairy-based or dairy-free), so I cannot comment from personal experience on that particular product.  I would say that any product that causes your son to break out in hives is definitely NOT a product that is appropriate for him!  He is obviously allergic to it.  Certainly, casein intolerance and/or an allergy to a food or product can cause night waking.  Again, I cannot say whether the dairy-free Culturelle contains any casein because we have never used the product. 

We have, however, dealt with night-waking episodes, so I can share from my experience with that. I have found that there can be many causes of night-waking.  For example – gluten and casein intolerance, allergies (both food allergies, airborne allergies, allergies to mattress materials and materials in the room), serotonin and melatonin imbalances, yeast overgrowth, bacterial overgrowth, elevated ammonia levels, going to bed too late, toxicity of the body, pinworms, and gastric problems can all cause night waking.  There could also be several of these issues working together to cause the night waking. 

For instance, we linked my son’s night-waking to serious bacterial and fungal intestinal overgrowth, which produced toxic metabolic byproducts (including elevated ammonia levels).  When we aggressively treated the bacterial and fungal overgrowth, he was able to sleep through the night.  One caveat – his nights became significantly worse for about two weeks before they got better.  As the harmful bacteria and yeast died off, his sleep became severely disrupted for a short time.  We used activated charcoal (several hours apart from any supplements or medicines!!!) to help reduce the symptoms.  We worked with a DAN/Yasko MD through this process.  If you are not working with a doctor with this type of training, it may be better to deal with bacterial and yeast overgrowth in a slow but steady way, to reduce the die-off symptoms.   
We have been very happy with the probiotic we chose for daily use – it is by Neocore Spectrum – called GI Maximizer.  You can order online at www.neocorespectrum.com  They are completely gluten-free and casein-free (and also free from FOS, which can be extremely irritating to those with GI issues in autism).  I find that Neocore Spectrum’s 25 + BILLION capsules are actually more effective than another product we had used that was labeled as 75 billion. 

One last thought – after three years of my son waking up multiple times every night, I really needed to know WHY he was waking up in the middle of the night.  At that point, I really prayed that the Lord would give me specific direction on what was at the root of the problem and what to take for it.  I am so thankful for the answers I received!  I pray for guidance for you and for health and healing for your entire family! 

Be blessed!
“For everyone who asks, receives, and he who seeks, finds, and to him who knocks, it shall be opened.”  Luke 11:10 NASB

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July 2, 2009 at 8:15 pm 1 comment

Overcoming Sensory Issues with Food in Autism

Kattie submitted the following question regarding problems with eating:

“my child was diagnosed with autism 2 years ago. he has been tested and does have mild alleries to wheat,milk,eggs. meal time is such a battle..he only eats about 5 foods. cheese, ramein noodles, cherios, bread, and strawberries. trying to get him to eat anything other than that he gags himself to the point of vomitting.any advise on where to start??? i do have a gluten free casein free cookbook, however it is very hard to follow. do you suggest any books or food stores that can be any help?
his doctor hasn’t really been any help. thank you.”

Hi Kattie,

I hear your struggle! My son gagged for a long time too, (and had to drink water to wash down every bite) but no longer does it. My suggestion as far as food is to see if your local grocery store or health food store has a section with gluten-free items. There are alternatives to his favorite foods. Instead of cheerios, we use “Perky O’s” made by Perky’s 100% Natural brand. I think it is this brand that also makes a cereal called Nutty Rice (no nuts in it though). It is not like Cheerios, but so good that it is worth mentioning. For pasta, there are lots of brands that make rice pasta – we particularly like the rice pasta (spaghetti, penne, spirals) made by Mrs. Leeper’s brand. I use coconut oil on the pasta with a bit of Celtic Sea Salt and it tastes great!

There are also many gluten-free breads. Food for Life makes great gluten-free bread and has many choices. Also, Enjoy Life brand makes fantastic gluten-free cereals and snack bars. We use Rice Milk – make sure it is labeled as Gluten Free. We use Rice Dream, Original Classic (unflavored). We do NOT use the flavored or enriched because these have items which have been shown to be excitotoxins and harm the brain. (See writings by Dr. Russell Blaylock and Amy Yasko).

As far as cheese goes, I haven’t found a casein-free cheese. Most soy cheese contains caseinate or casein. Also, most DAN doctors advocate not having soy because it is problematic for children with autism.

I would then start slowly incorporating different tastes – just a bite at at time of other foods. Try some yummy vegetables like butternut squash with cinnamon and a little bit of stevia for sweetness. Or, cauliflower steamed very soft and mashed with oil, a touch of rice milk, and salt.  You can also adapt regular recipes to be gluten-free/casein-free.  For a long time, my son did not like the texture of red meat or chicken so I created recipes for gluten-free, casein-free meatballs and chicken meatballs (or hamburgers). You can also make them egg-free with egg replacer. In the coming weeks, I will share some of my invented recipes that are easy (15 minutes or less!), so check back here.

The thing that helped my son the most, however, was addressing the physical causes for the gagging and food aversions. I obviously do not know what is causing these problems for your son. I can only share with you what worked for my son.  I put my son on a high-quality multivitamin and mineral supplement to address deficiencies. I noticed that this helped with many of his sensory issues, including his aversions to foods (ex. he then liked avocadoes, which he previously choked on). I also found that one of the most-helpful things for my son early on in treatment was digestive enzymes, taken with everything he ate. They helped him to actually digest the food he was eating, and his behavior relating to food dramatically improved within three weeks!

It is a struggle, but keep trying. The extra effort is worth it. Now my son gladly eats everything I give him – he even LOVES swiss chard and broccoli!

Blessings and endurance to you as you press on!

“Therefore, my beloved bretheren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.” 1 Corin. 15:58 NASB

 

July 14, 2008 at 9:16 pm 9 comments

Gluten-Free/Casein-Free Diet in Autism – A Great Starting Place for Biomedical Treatment

Yanti had a question on the effectiveness of the gluten-free/casein-free (GF/CF) diet in autism and whether hyperactivity or non-hyperactivity was a factor in deciding whether to follow the GF/CF diet. 

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!

July 1, 2008 at 8:07 pm 4 comments

Conversion of Sugar to Stevia

Viola submitted this question regarding the use of Stevia:

 “I would like to know how to convert stevia into cups of sugar in a recipe or what other alternatives there are to cups of sugar in a recipe?”

Thanks Viola – this is a great question.  I think the answer really depends upon the type of Stevia you are using.  Some Stevia also contains fiber so it is not as sweet as pure Stevia.  Also, the unrefined Stevia liquid (which is dark brown in color) tastes and converts differently than the refined clear liquid or white powdered Stevia. 

Here is a chart for general reference.  The more you cook with Stevia, the more you will know how much you like to use.  I have experimented with the particular brand of Stevia I like and know exactly how much I like in each particular recipe I use based upon taste. 

 

Granulated Sugar

Whole Stevia leaf powder

White Stevia Extract (powder)

1 teaspoon

1/8 teaspoon

Dust on spoon

1 Tablespoon

3/8 teaspoon

1/2 pinch

1/4 cup

1 1/2 teaspoon

Pinch

1/2 cup

1 Tablespoon

1/8 teaspoon

1 cup

2 Tablespoon

1/4 teaspoon

 

 

April 14, 2008 at 8:43 pm 7 comments

Dietary Changes in Children with Autism Spectrum Disorders

Here is a question from Kathy about the Gluten-free/Casein-free diet and Specific Carbohydrate Diet: “I was considering putting my 5 yr. old on medication for severe temper tamptrums mostly over food. Do you reccomend trying the diet first? I think it will be hard because he is obsessed with food he binge eats.”  Kathy

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.

A final thought – we need to lead our children confidently, and effectively.  I believe it is absolutely important to consider my child’s wants, desires, feelings, likes and dislikes.  However, I am also responsible for taking him down this road to recovery from autism.  The very minor discomfort caused to my son by dietary changes is far outweighed by the benefit!  Many parents report significant improvements in behavior through the GF/CF diet and SCD.  I know we saw them, and I hope you do too! 

Blessings to you and your family in this journey!

January 30, 2008 at 8:34 pm 1 comment

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

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 –

Edit Comment

  • 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!

  • January 20, 2008 at 8:58 pm 11 comments


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