Recently, Hope wrote with a question regarding the GFCF diet and SCD.
|“As of a week ago we (family of 7) have started the GFCF diet. The main reason is because we read that three out of our five children could possibly benefit from the diet. My youngest son has never been diagnosed with Autism but he does have some of the symptoms. My middle son has a mild form of Asperger’s and my daughter suffers from Allergies and Asthma terribly. All the literature I have read says that the GFCF diet could help, so we have made the change. Then I ran across the SCD and realized that everything I am feeding them on the GFCF diet is wrong for the SCD diet. The other problem is that 2 of my children are highly allergic to all nuts so I cannot use any nut flour.
More than anything I want to see progress in my children and am willing to try anything at this point. I want to hear my 6 year old talk, to stop the repetitive behavior and to be more controlled emotionally, but I have no idea what to cook for him for breakfast and lunch, especially since he can not have nuts of any kind. Also, I think he maybe allergic to eggs, so enforces more limitations.
If you can help I would appreciate it so very much. At this point, I am just feeling overwhelmed.
Hope, Thanks for your question! Which to choose – SCD or GFCF?? Hopefully I can give you some information to consider in making this decision for your family. I have stated in other posts that, although I do think the SCD diet serves its purpose, I do not think it is nutritionally sound, especially as a long-term solution. We did strictly follow the SCD diet for six months and did see some improvements, but, there were also drawbacks. First, I agree with you regarding the nut and egg allergies – this can be a huge problem, and, in a person with an out-of-balance immune system, repeated exposure to a particular food can create an allergy where no allergy previously existed. After consulting with one of the top allergists in our state, we avoid all foods to which we know we are allergic (either through testing or reaction), and we have placed many foods on a four-day rotation. This means, even though our test results may not show we are allergic, because of the high-probability of allergies with certain foods, we do not the particular foods any more than once every four days. My understanding for this rationale is because the liver is involved in allergic reactions, and it takes four days for the liver to detoxify a substance; therefore, exposure more-frequently than every four days can trigger an immune reaction. The foods which we place on four-day rotation are those that are the most-common allergy triggers, such as eggs and nuts. You can search for the top-eight food allergens for more information. (A side note on nuts – we NEVER eat peanuts or peanut oil. They are notoriously contaminated with fungal toxins and are a health hazard for all people.)
As far as choosing between the SCD and GFCF diet, my PERSONAL OPINION is that the GFCF diet is far more important than the SCD. Check with your doctor first, since I am not a medical doctor and cannot give medical advice. An internet search will reveal many doctors speaking of the importance of the GFCF diet, with the SCD diet having far fewer supporters. (I do not believe that popular approval validates any information, and many times, the popular way is the wrong way. In this case, I am simply suggesting that, among the doctors and health practitioners who are “in the know” regarding GFCF diet and SCD, it seems the GFCF diet has more support behind it. Please do your own research.)
The basic premise of the SCD diet is that the gut of many people demonstrating autistic symptoms (and other health challenges) is populated by an overabundance of “bad” bacteria and yeasts, and the SCD aims to “starve” the bad bacteria, thereby improving symptoms. I do agree with the premise of the diet; however, I think there are better ways to reach the goal of minimizing the bad bacteria in the gut. There are many dietary supplements that I think are more effective than the SCD, such as grapefruit seed extract (GSE), oregano extract, colloidal silver (don’t believe the blue-man stories in the mainstream media), Lauricidin (a derivative of Coconut Oil), and, my personal favorite, a specific garlic formulation called Allimax. My personal experience is that these products are FAR-SUPERIOR to the SCD at ridding the gut of an overabundance of “bad” bacteria. Many of these also have anti-fungal properties and will work to control yeast as well. I did not see results on stool tests from the SCD. I did see results from using the supplements I listed. Additionally, you avoid the problems of the SCD, specifically the reliance on nuts and the over-consumpton of protein in the SCD. As a reminder, whenever you take products to kill the “bad” bacteria, “good” bacteria will also be killed, so it is important to take probiotic supplements. (Probiotics are in my top-five of nutritional supplements I believe are necessary for maintaining optimal health.)
So, my bottom-line on the SCD is this: I think it can be helpful for short periods of time, as I believe the premise on which it was established is sound. However, I do think the same goal can be reached through other therapies which do not pose the same problems as presented by the SCD. As I have written in a couple of other comments, I wrote my initial posts on the SCD when we were on the SCD and was impressed at the time with the written materials on the diet. After additional learning, however, I do think there are more-sophisticated and better ways to accomplish the goal of establishing healthy gut flora. Do I think it is important to reduce the amount of carbohydrates (breads, pasta, crackers, sweets, etc.) consumed? Yes, however, not to dangerously low levels, and keep the whole-grain, gluten-free grains such as short-grain brown rice, GF oatmeal, buckwheat (not a wheat product), millet, etc. In my family, I make sure a whole grain is consumed with each meal because without it, I find our blood sugar gets low. Balance is the key.
As far as the GFCF diet, I think this is THE foundation for all autism therapies. It grieves me to hear of families spending tens of thousands of dollars a year on behavioral therapies, yet not following a strict GFCF diet. Research the opinions of doctors who are willing to speak the truth, no matter the cost to themselves, such as Dr. Art Krigsman (a GI doc) and others. A well-known autism doctor told me years ago that it takes at least six months for the peptides formed by incomplete breakdown of gluten and casein to be removed from the system, so the GFCF diet can take up to six months before improvements will be seen. Most parents who use it say improvement happens much sooner than that.
Many claim there is “no evidence” for the GFCF diet. Do your own research. Research the opinions of doctors who are not receiving funding from the NIH (National Institute of Health) or any other quasi-governmental agency. Check out the connection between gluten, casein, and the immune system. Look up the connection between cerebral folate receptor antibodies, autism, and down-regulation of the immune system by milk proteins. Also, review the Autism Research Institute’s Parent Rating Guide – PARENTS rate the GFCF diet as one of the most-effective therapies.
Finally, although most general health resources may not take into account food allergies and sensitivities, I do think it is important to look at other health resources for healthy diet suggestions. For example, I have learned much from reading articles written by Joseph Mercola (www.mercola.com) and Dr. Nicholas Perricone. I also like Dr. Steven Sinatra’s supplement suggestions (he’s a cardiologist who writes about the connection between mitochondria and the heart), since problems with mitochondria are often present in autism. Anti-aging experts are also helpful. The most important thing to remember is that any dietary choices need to promote overall health and work for the individual. For example, we simply will not follow any diet that requires complete elimination of all carbohydrates or of all fats, since I know we feel terrible on these types of diets. The more simple you can make it, the better. We eat organic chicken, Crown-Prince sardines in olive oil (these are real sardines from Morocco, not herring as many “sardines” actually are), Vital Choice sockeye salmon, organic, grass-fed beef, along with plenty of steamed vegetables, brown rice, GF oatmeal, and use olive oil and coconut oil. I NEVER, ever make a casserole since that is just calling for ingredients we can’t eat, and my family would not eat it if I did. We use Celtic sea salt only. After-dinner treats can be simple things like “rice pudding,” which is simply cooked brown rice with stevia, cinnamon, and rice milk added after cooking. The fact is, when kids get used to eating simple, whole, healthy foods, this is what they will want. This is all my family has known, and they don’t even want to sit next to anyone who is eating pizza or some food that is “foreign” to them.
And again, please research all these issues for yourself and consult a qualified medical practitioner. I cannot and do not provide any medical advice, nor should any opinions contained on this blog be considered medical advice. I am simply furthering the expression of ideas and dialogue as contemplated by the First Amendment of the United States Constitution.
I have found that it is my responsibility to protect the health of my family. No one else will accept this job with the same passion, education, and unwavering dedication as I will, nor should they. I trust my own judgment for myself and my family and accept the words of others (even medical professionals) as OPINION ONLY. Please do not take my word for any of this. Read, research, and explore for yourself. I am a voracious reader and have applied this passion to reading and research regarding health for my family. I truly believe in the natural rights and powers of the individual and hope that the information I have provided serves as some “food for thought,” and further research, and is a help to you on your own personal journey to health and prosperity. I pray the Lord’s abundant blessings would joyously overwhelm you on your path to abundant health.
Most parents are overwhelmed when they hear a GF/CF diet is important in helping children with autism. Here is a great link that can help to make this easier – by Chef David Shaw-Zam:
One of the best blogs I have seen on parents rights in custody battles relating to 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!
“For everyone who asks, receives, and he who seeks, finds, and to him who knocks, it shall be opened.” Luke 11:10 NASB
Thanks Alex for the following question about progress through probiotics:
My 5 yr old son is on the gf/cf/sf diet and I’m just about to order lots of supplements online. After reading your Press On! it sounded like us, however we haven’t started any probiotic yet. My son’s “disagreeableness” (made sense to me!) is pretty bad right now, without any supplement. How long roughly was the “rough part” for you?
Did the new line of probiotics that you mentioned come out yet?
Yes, the probiotic product (and other products we use) have been released and they are fantastic! The company is Neocore Spectrum, and the website is http://www.neocorespectrum.com. The probiotic is very high-potency with 25 + Billion CFUs (colony forming units). It is gluten-free, casein-free and also free from FOS (a prebiotic in many probiotics that feeds bad bacteria). It also is formulated so that the probiotics survive the stomach acid and can actually colonize in the intestines – where they can do their job.
We also use all the products offered by Neocore Spectrum – the multivitamin/multimineral, enzymes (both chewable and capsules), omega-3 fish oil (small gelcaps), liquid antioxidant extracts (my sons LOVE the Blueberry), and the Silver Renew gel. The Silver Renew skin gel has been wonderful for us – we use it on bug bites, skin irritations, eczema, and even used it on a viral rash called Molluscum. I recently had some horrible eczema flare-ups on my arms and used the Silver Renew and saw relief within minutes, and complete resolution in only a few days.
The thing I love best about the Neocore Spectrum products is that I really feel I am getting a value for my money. For example, the multivitamin/multimineral is very complete and is reasonably priced. It is well-suited for our autistic children. (I use the products for myself too!) It is free from copper and iron, it uses many natural forms of vitamins. It also contains the active forms of folic acid, vitamin B 12, B-6 (it contains P-5-P), which the information published by the DAN! doctors and the Autism Research Institute shows that autistic children have difficulties processing these vitamins and need the more active forms. There are even bioflavonoids for extra antioxidant protection. A multi like this is truly hard to come by!
Alex, to answer your question as to how long the most difficult part lasted – I must say that it took several months of working on the yeast imbalance before I noticed that my son’s behavior and mood improved and the “disagreeableness” began fading away.
As I mentioned, he was so toxic when we began the probiotic supplementation, that we saw his behavior worsen for the first few weeks. He even had some nights of rough sleep where he would kick and scream out at night. I now know that was the bacterial and yeast die-off. Now I know that activated charcoal pills can help alleviate some of the die-off reactions. (Make sure not to take the activated charcoal within 2 hours of eating or taking any supplements.) Also, it is important to stay away from sugar – even excessive fruit sugar (ex. we avoid dried fruit) and moldy foods. It’s also important to work on the overall health of the body – supplying the vitamins, minerals, essential fatty acids, and nutrition that the body, and specifically the immune system needs.
It is a lot of effort, but I must say it is worth it! Tonight as I was giving my boys a bath, I was thinking back a couple of years. I was remembering how difficult it was back then to give my son a bath. He would throw a constant fit during bath time – he didn’t like the water over his head, he didn’t like the smell of the soap (which was totally unscented!), he didn’t like the towel, he didn’t want his hair dried, and on and on! By the time I got him to bed, I would be in tears! Now our bath and bedtime routines are a joy! My boys hug and kiss each other goodnight and say “I love you!” to each other and to me! It is what I hoped, worked, and prayed for, and I am truly thankful! I pray for that same joy for you!
There is lots of great information on the internet about the causes and treatment of autism. Early on in our journey to bring our son to healing from autism, I personally found so much help from the Autism Research Institute www.autism.com and many others. I spent hours and hours staying up way too late, educating myself about the causes and treatment of autism (the treatment of it and not merely management of behavioral manifestations).
Recently, I discovered an upcoming teleconference seminar which I believe will clearly present information on the causes and treatment of autism. I have personally registered for it because I am interested in always learning more about helping my son. I believe it will be educational and full of hope!
The teleconference seminar is scheduled for August 14, 2008 at 7:00 p.m. Eastern Time.
Here is the link to register:
When you register, you will be directed to a page with the phone number to call in for the teleconference, and it also includes a link to listen live via webcast.
I also encourage you to read the information on this related website: www.Lispectrum.com There is fantastic, well-presented information on this site about the causes and treatment of autism. I encourage you to read it!
Blessings to you as you learn and journey toward healing!
“But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him.” James 1:5 NASB
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.”
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