***OK, first and foremost I need to say that I am not a doctor and any suggestions you see on my site aren't intended to replace your doctors health care advise. Most local doctors in the Redding area don't know about the diet and biomedical intervention so you should seek out a DAN! doctor to guide you on the path to recovery.
That being said, there's no harm in starting the diet before you get to the DAN! doctor. My son was on the diet months before we saw a DAN! doctor.
OK, on to The Diet. The GFCF Diet is the removal of all foods from the child's diet that contain Gluten, Casein, and Soy. The leading clinical researchers in the country are reporting that as many as 80% of children on the Autistic spectrum are unable to fully process gluten, casein, and soy proteins. Proteins consist of long chains of units known as amino acids. Normal proteins are digested by enzymes in the intestines and are broken down into these units. However, if for some reason, this digestion is incomplete, short chains of these amino acids (known as peptides) will result. It is proposed that these peptides may be biologically active and could result in the symptoms which we see in autism. The majority of these peptides will be dumped in the urine. A small proportion will cross into the brain and interfere with transmission in such a way that normal activity is altered or disrupted.
It is well known that casein (from human or cow milk) will break down in the stomach to produce a peptide known as casomorphine, which, as the name implies, will have opioid activities. Similar effects are noted with gluten from wheat and some other cereals (notably oats, barley and rye) in which the compounds formed are gluteomorphins (or gliadinomorphins.) Many parents report that Soy is similar enough to gluten and casein that their children did not show improvements until soy was removed from their diet. Therefore it is now widely recommended that a trial diet must include the removal of soy along with gluten and casein.
Researchers and parents have dubbed this digestive phenomenon and it's affects on our kids as "The Opiate Effect". Many parents of ASD kids report that it seems as if their children are in a fog, not responding to their name being called, and seem to be stuck in a world all their own. Self injurious behavior, repetitive behaviors (like opening and closing doors, and not responding to pain stimulus like other children do are also common in our ASD kids. Sound familiar? Yeah I thought so. Turns out these aren't just symptoms of Autism.....they are symptoms of a digestive track that for whatever reason is out of whack and not properly digesting these proteins. Here is a list from the Autism Research Institutes's website detailing some of the symptoms children may exhibit if they have sensitivities to Gluten, Casein, or Soy.
Clues for Parents Considering the Defeat Autism Now! Approach
Parents have reported the following conditions may be clues your child could benefit from the Defeat Autism Now! approach.
Chronic constipation (lack of bowel movements) and/or diarrhea (multiple daily bowel movements)
Undigested food in the stool
Frequent or smelly gas
Smelly bowel movements
Very bad breath that won't get better despite good tooth brushing
Bloated belly/malnourished looking
Acid Reflux and/or ulcers
Night waking, especially if the child is upset/in distress
Abdominal pain
Pain before pooping
Odd positions while pooping
Laying on furniture or using hands to press against abdomen
Parasites, either now or previously
Growth Chart abnormalities – decrease in height or weight percentile
Any confirmed GI dxs such as IBD, Colitis
Food allergies and/or food intolerances (such as lactose intolerance)
Over the top cravings of certain foods, especially if wheat, dairy, or soy
Allergies to grasses, weeds, pollens, etc.
Unexplained rashes, hives or eczema
Asthma
Red ears, or dark circles under eyes –"allergic shiners"
Worsening behaviors during allergy (pollen) season (usually spring & fall)
Repeated cases of Strep Throat
Numerous ear infections, sinus infections or other infections now or earlier
Previous treatment for yeast infections or thrush
Nosebleeds
Never getting sick with common viruses or the flu
Frequently sick as a young child, and then never sick after that
Worsening of behaviors over time despite being in quality therapy programs
Inability to get to sleep or stay asleep
Heavy snoring or frequent night waking
Adenoid and/or Tonsil enlargement/removal
Excessively Sweaty /Sweaty Heads
Excessive Mouthing or Sucking of Items, and/or Teeth Grinding
Super Human, lift a car off a person strength
Lymph Gland Problems
Thyroid Problems
Immune System Issues
Auto-Immune Diseases
Cancer
Potential exposure to environmental toxins, here or in birth country
Mercury (silver) dental fillings
Reactions to vaccines such as high fevers, swelling at injection site, high pitched screaming, etc.
Vaccines given while child was sick, underweight, on antibiotics, or after Tylenol was administered
Double vaccinated both here; in birth country
Vaccinated here under an accelerated program in order to get the child quickly "caught up"
Regression shortly after a certain set of vaccines
Being ill with Roseola close to the time of MMR and/or Chicken Pox vaccine
Speech & Language Delays
ADHD behaviors
Sensory Integration issues
Bi-Polar like behaviors - manic or severe mood swings - very up and very down/depressed or aggressive
Violent, rageful tantrums
Anxiety
OCD behaviors
Lack of eye contact.
The idea here is that the more symptoms you recognize in your child the better the chance that they have sensitivities to these proteins. This list really was the catalyst for me to realizing that his "Autistic Traits" were actually symptoms of biological problems and that those symptoms could be healed by addressing different areas of his health. Autism is not JUST a psychological disorder, it's biological too. I sought to research all that I could because I wasn't going to miss out on any opportunity to help my baby live his best life possible. I worked over 4 months to find acceptable alternatives for my son's favorite foods so the transition was easier for him. There is an ongoing debate here about the right way to start the diet. I will address this in the getting started page. I bought books, read blogs, tried recipes , and found myself buried deep in the farthest corners of the internet learning about the benefits of the diet. I convinced my somewhat skeptical husband to get on board with the idea after telling him about the success stories I read online
After 4 months of research and grocery store raids I was ready to start my son on the diet.
Uh wait a minute, reality check...let's back up a bit. I'm not going to skip over the hardest part of the whole journey like it was cake. Here's the thing...it sucked. It was one of the hardest things I have ever done. Not only had our son just been diagnosed with Autism 4 months earlier but he was also born prematurely with his twin brother at 25 weeks and spent 3.5 months in the hospital before coming home. His brother died two days later in my arms. My son came home on heart and lung monitors and was not "wire free" until close to his first birthday. We spent his first three years rotating through a whole entourage of therapists, and had to deal with normal preemie issues (like his heart stopping while having a bottle) as well as a few that were not so common....like that dam helmet!! At that time he was diagnosed we had something like 9 appointments a week to see various therapists. Anyway the point is that we had our hands full and now this? Autism? Really? Fuck. That's just great. Hasn't the kid been through enough? Haven't we all been through enough?
So a few days later....after lots of tears...I got to work. I had heard a little bit about the diet on Oprah once so it was kinda on the back burner for me when we were waiting on my son's diagnosis. Researching the diet became my second job. After my son was in bed I went to work and every chance I could get I was taking in information. This was where it started. This crazed, heavy, anxiety that spread through me as I began to get slowly overwhelmed with the realization that DAM this is too big....I can't do this....hell I can't even keep up with the dam laundry...and I had a growing fear that I was doing all this for nothing and I was wasting my time and driving myself crazy with too much research....and worst of all the possibility that I was getting my hopes up for nothing. I needed a break. Unfortunately I didn't take a break and ended up sobbing in the garage one night fighting with my husband about how I couldn't do this alone and I needed his help....and this is too much for one person alone and ...OH MY GOD ...I think I'm having a nervous break down.
Funny thing about life...if you don't slow yourself down then eventually it won't be choice anymore. Take it from me too much info can be debilitating. Take all this slow, one step at a time. Use this blog as your guide and portal to the world of Biomedical Intervention so you don't get overwhelmed. I've done my best to streamline the info on this blog but it's very easy to get overwhelmed and give up. Make no mistake, starting your child on the diet isn't easy at all. That is precisely why I started this blog. I'm hoping that I can help other parents who want to give the diet a try by helping you with the hardest part....just getting started. Don't worry though after a month it all becomes second nature. Just take one step at a time. I am here, I survived it...you will too. There are rewards for all the hard work, I promise.
OK so back to the start. It took me 4 months but I was ready to start the diet. I was armed with a kitchen stocked with diet friendly foods that I knew he would eat and a killer mama gut instinct that told me I was doing the right thing. The first few days were uneventful for us ...I suspect that this is because he was only dealing with removal of two of the three proteins. Our son was suspected to have a milk allergy early in the first year so he'd been off Casein and Milk for a long time. He did show some signs of withdrawal (see getting started tab for more on this) but they were minimal. By the fourth day Husband and I were saying to each other "did you hear what he said just now?" OMG I didn't even know he knew what that word meant!" On the seventh day of the diet our mouths were hanging open in utter disbelief of the things our son was saying...It was as if someone reached into our son and switched him on. We're talking going from just one or two word utterances to full sentences. Husband and I spent the day tearing up on and off and couldn't believe our eyes and ears. Needless to say we were convinced that this was the right choice for our son and he improved daily for the next four months. Then I began to look further into the other "Layers" of his symptoms. I address these other treatments on the Biomedical Intervention page. They are essential treatments to implement after the diet that will heal your child even more than the diet does. It's been nothing short of amazing to watch how these treatments help my son.
My son had the following symptoms from the list above before starting the diet:
Chronic constipation
Undigested food in the stool
Frequent and smelly gas
Smelly bowel movements
Very bad breath that won't get better despite good tooth brushing
Bloated belly
Acid Reflux
Over the top cravings of certain foods, especially if wheat, dairy, or soy
Red ears, or dark circles under eyes – "allergic shiners"
Numerous ear infections, sinus infections
Never getting sick with common viruses or the flu
Worsening of behaviors over time despite being in quality therapy programs
Excessive Mouthing or Sucking of Items, and/or Teeth Grinding
Vaccines given while child was sick, underweight, on antibiotics
Speech Language Delays
ADHD behaviors
Sensory Integration Issues
Bi-Polar like behaviors - manic or severe mood swings - very up and very down/depressed or aggressive
Violent, rageful tantrums
Anxiety
OCD behaviors
Lack of eye contact
After Being on the diet and Biomed for over a year the following symptoms disappeared:
Constipation
Undigested food in the stool
Frequent and smelly gas
Smelly bowel movements
Very bad breath that won't get better despite good tooth brushing
Bloated belly
Acid Reflux
Red ears, or dark circles under eyes – "allergic shiners"
Numerous ear infections, sinus infections
Never getting sick with common viruses or the flu
Excessive Mouthing or Sucking of Items, and/or Teeth Grinding
Bi-Polar like behaviors - manic or severe mood swings - very up and very down/depressed or aggressive
Violent, rageful tantrums
OCD behaviors (mostly gone)
Also the following symptoms were greatly diminished and are getting better all the time:
Anxiety
Speech & Language Delays, he talks great now!
ADHD behaviors
Sensory Integration issues
OCD behaviors (Echolalia with our son, repetitive speech, scripted speech, repetitive questioning)
lack of eye contact ( much improved)
My son also wasn't big on hugs, kisses, and affection till after we started the diet. This started a week or so into the diet. I got my first voluntary and unrequested hug from my son and almost burst into tears. He always shied away from a lot of affection before the diet so I always had to ask for hugs...and even then he would just kinda half do it....like brushing his teeth. Now he was hugging me without being asked and running up for a kiss many times a day. He also started looking up and greeting me when I entered the room, which he never did before. He was 3.5 years old at this time. About this time we also started seeing him respond to his name when it was called. His constipation and many other issues such as the circles under his eyes started to get better. He was happier and there was a definite spark in the kid. There was no doubt about it, he was feeling much better. Very exciting times for our family for sure. People often say that treating autism is like solving a puzzle and with any puzzle you don't solve it until you find all the pieces and fit them securely into place. Each child on the spectrum will benefit from any number of combinations of biomedical intervention and therapies, it's up to you as parents to decide what are the right tools for your children. I just want to make sure local parents know that there are things they can do to help their children and research shows that starting with the GFCFSF Diet is the best first step for the majority of children on the spectrum. Even for kids who don't respond to the diet research indicates they will still benefit from biomedical intervention. The Feningold Diet and SCD Diet have proved to be acceptable alternatives for for kids not responding to the GFCFSF Diet. See more about these on the Biomed page of this blog.
Good luck to you all, please feel free to contact me with any questions. My goal is to help other parents get started with biomedical intervention so please email me or leave a question at the bottom of the page if I can be of help in any way.
