Response to ‘ Desperate measures: The lure of an autism cure ‘
That’s the title of the New Scientist article debunking autism interventions such as GF/CF diet (Gluten free, Casein free). New Scientist reports all the evidence is there… a randomised, placebo-controlled trial in which they took a load of kids with the same label (and excluded all those with gut/immune symptoms – go figure), applied the diet and found the diet didn’t make these kids non-autistic. Wow, really? So let’s see…
what if we first took that same group, got them a saliva swab for Secretory IgA levels and found which were IgA deficient? What is IgA you ask? Well, IgA is an immunoglobulin, yeah, big word, but it is part of the immune system. It has some really important jobs. One of those jobs is to signal the white cells (fighter cells) about which bugs the body has and where they are so the white cells can go do their job. No IgA and the white cells sit there sloth like and get infected. Eventually, the kid gets so overwhelmed with a high viral, bacterial, fungal proliferation their body goes into an inflammatory state – in short hand, they become allergic.
But IgA has another important job. See it lines the mucous membranes of the ears, nose, throat, lungs, stomach… yep, the stomach. And what it does there is helps the immune system know what bugs to come and fight but when we eat food, it is IgA that sends signals to our liver and pancreas to send the appropriate enzymes. No gut IgA means no messages for enzyme production. That means poor digestion. So what are the two hardest foods to digest? Gluten and cow’s milk casein. Why? Well these are big complex protein molecules. A baby cow, for example has four stomachs to digest it’s mother’s milk – FOUR. Yep, we have only one, like sheep do, and sheep milk is a far easier casein molecule to digest. So can people with IgA deficiency digest gluten and cow’s milk casein? Nope. They can’t. And to complicate it further it is in the literature that those with IgA deficiency generally always have a false negative to a Coeliac test. Yep, they can’t digest gluten, but it doesn’t show on the Coeliac test even though it does in the urine.
And added to this salicylate lowers IgA levels so if you’re already IgA deficient chances are that if your diet is high in salicylates that you’ll be in a higher inflammatory state than if you’re on a lower level of salicylates. What increases Salicylate levels other than perfumes, yeast extract, honey, almonds, stone fruits, berries, grapes, curry, concentrate fruit juices etc? Swallowing fluoride toothpaste. And though its known to strip the lining of the digestive tract and has warnings in the US on toothpaste that its not for children under 6 (in case they swallow it or don’t rinse thoroughly) conference after conference I survey my audience and there are always parents with kids eating the fluoride toothpaste, and these are often those with the most severely challenged autistic children.
Can those with IgA deficiency fight Candida Albicans? Nope. That’s one of the jobs of IgA. No IgA and Candida walks right in and sets up home. And what feeds Candida, making it spread? Sugar and refined carbohydrates… eat them and Candida will have a party. Systemic Candida, for those with Chronic Fatigue Syndrome will know it causes brain fog, leaky gut, general malaise if not similar effects to being hungover. And those with IgA deficiency on the wrong diet can be in that state for years if not treated.
So what’s all this got to do with autism? Well, once upon a time, in 1996 before the diagnosis of Asperger’s swelled the ranks of the autism population from 1 in 10,000 to 1 in 100, an immune specialist, Sudhir Gupta, found that 20% of people with a diagnosis of autism were IgA deficient and that 10% (and I was in this group) had none.
Of course there will be others who benefit from a GF or CF diet; those with Coeliac, those with gluten intolerance, those an allergy to gluten or wheat or milk, those with high anxiety or depression whose digestion and immunity will be surpressed making it harder for them to fully digest gluten and cow’s milk casein. The fact those with autism are also human beings means the rate of these conditions in the general population will also be found among those with autism. To presume someone with autism couldn’t have these things is like presuming they couldn’t be blond, left handed or have diabetes.
So fast forward to 2010 and the randomised, placebo-controlled trial of GF/CF diet on kids diagnosed with autism. To find which kids the GF/CF diet would have helped they’d have had to find not those with the share label of autism, but those who tested as IgA deficient. In 1996 when the autism numbers were still around 1 in 10,000 this would have been around 20% of that population. In 2010 when the autism numbers were around 1 in 100, there would have been at least 50-70% these people closer to having Asperger’s. This is not the population at all in which you’d expect significant gut, immune, metabolic disorders. A simple saliva test for IgA levels would have selected out those with significant chance of gut, immune and metabolic disorders. There you may well have found that a large percentage indeed responded to a GF/CF diet. I’m one of them.
Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com
Thank you. Most enlightening. I feel much better about myself now having a little more insight into my futile crusade for help only to be turned down as some problem don’t show on a test; I’m not so dumb after all! I feel more of an acceptance for myself on my hereto lost battle against candida and the other things you mention. Just knowing that someone knows what’s going on and understands can be of great comfort sometimes. Reading your response was that to me.
I wish you all the best.
Another way to screen might be to choose those with first degree relatives who have autoimmune diseases like lupus. Of course, I have IgA deficiency (and also low IgG–CVID), but my grandson who is autistic does not. However, both of us have celiac disease and he apparently had gluten ataxia affecting his vestibular functioning. There is a form of varicella, as well (chickenpox) that affects the ear and nearby structure, called Ramsey-Hunt syndrome–and I have seen at least one abstract saying that it can be associated with celiac disease. My grandson regressed after the varicella immunization he received at one year of age. He is high-functioning autistic, and he will tell you himself how terrible gluten makes him feel. He hasn’t had any since he was 5. He’s now 9.5. When children’s development is messed up by immune and neurological disorders (and live virus vaccines), they do not recover all the lost ground when some of the triggers are removed. But they do recover to a great extent!
Thank you for explaining this with such clarity. I’m passing the post along!
You got to love these biased reporters. I was the mom that was interviewed for the article about my son, Leo. There were lots of liberties taken with what he wrote vs. what he actually said to him. For one, my son was NOT diagnosed with Autism at the age of 2. I didn’t even know what Autism was at the time. Actually, he didn’t get an official diagnosis of autism until THIS YEAR. (He is 7 years old )The rest I have saved in an email and I am happy to share that with you.
It just goes to show you how these reporters work. The very first sentence of his “scientific†article is a blatant lie! It is frightening that so much time and money is put on preventing the truth from getting out to the public. The science magazines are paying for these reporters to write stories that will serve their own agenda. Read what I wrote for yourself and you decide if you think this is just a “taleâ€.
Sent: Tuesday, February 09, 2010
>> Hi Maria,
>>
>> Thanks for getting in touch. Could you say a little more about what other
>> changes, if any, you’ve observed since putting your son on the GFCF diet?
>> What has happened to his cognitive, verbal and social development? And
have
>> you found it hard to stick to the diet?
>>
>>
>> Best,
>>
>> Jim
Here is my response,
On Tue, Feb 9, 2010
>> Hi Jim,
>>
>>
>> Like I said, my son was put on a GF/CF diet at a very young age. At that
>> time he was just starting Early intervention services though the state. He
>> was originally assessed before the diet was implemented. By the time we had
>> our first therapy session there was significant difference in his attention
>> and overall wellbeing. I remember the developmental therapist who also
>> assessed him a few months earlier say that she couldn’t believe it was the
>> same kid.
>>
>> With removing dairy we found that his eczema improved about 60%. He had
>> severe eczema since birth. Excessive crying and temper tantrums were also
>> improved dramatically with the removal of dairy. Although slow, his verbal
>> and social development continued to improve with a combination of diet and
>> therapy. I think it is very important to get the body functioning as well
>> as possible for these children in order for them to be able to attend and
>> focus enough to reap the benefits of therapy. I do not think that dietary
>> changes alone is enough to recover these children from their disability. If
>> there are delays in speech, cognition, social and development, you need to
>> provide them with many different alternatives to bring them up to speed with
>> their peers. A GF/CF diet is one of those interventions that have helped my
>> child and many other children progress and achieve their both long and short
>> term goals.
>>
>>
>> My son has several food and environmental allergies and it took us a while
>> to discover all of them. We are currently GF/CF, soy free, corn free.
>> After removing the soy at the age of 4 ½ we discovered that the soy was the
>> main issue with his digestion. He had diarrhea for 4 ½ years of his life.
>> Around the same time is when we started biomedical treatments with him. He
>> was very deficient in B-12, had high copper levels and very low zinc levels
>> and digestive enzymes and other supplements were added to his diet. We also
>> continued with Early childhood education and several private therapies
>> including, speech, feeding, Vision, Occupational and Therapeutic Horse Back
>> Riding. Again I stress that we needed to get his body functioning well in
>> order for him to be able to retain and attend enough for the therapies we
>> provided him to work.
>>
>> He is now completely verbal, has strong expressive language skills and is
>> in mainstream 1st grade at a blue ribbon school with a 1-1 aid mainly for
>> attention and focus issues. He still does and will continue to have a
>> restricted diet in order for him to function at his best. I am not sure if
>> soy free and corn free will have to be continued for life, but I can tell
>> you that I don’t see gluten or dairy being introduced in his diet at any
>> time in the near or far future because of his severe reaction to them.
>>
>>
>> As for your question about the diet being easy? To me it is. We have
>> been at this for almost 7 years now and it has become second nature to us.
>> My son is very vigilant about not getting allergens in his diet because he
>> is very aware of how sick he gets when he has an infraction. It becomes a
>> way of life. My son is very fit and I would say he has the best diet of
>> any of his peers. His school continually comments to me about how well he
>> eats and how healthy the foods he eats are. It took me about 6 months to
>> get the diet down without infractions. Reading labels and calling companies
>> took up a lot of time in the beginning. I was fortunate to see immediate
>> reactions with the diet as well as the bad reactions we experienced with
>> infractions in the diet. Not all parents see these results so cut and dry.
>> The diet is not easy at first but the alternatives for us were
>> unacceptable.
>>
>> This is a very, very abridged version of our last 7 years but hopefully it
>> will give you an idea of how diet has impacted our lives and was critical to
>> my son’s success.
>>
>>
>> I hope that helps you out a bit. I’m not sure if this is the information
>> you are looking for. Let me know if there is any other way I can help you
>> out.
>>
>>
>>
>> Regards,
>>
>> Maria
Sent: Tuesday, February 09, 2010
>> One other topic just came to mind.
>>
>>
>> When you first decided to try the GFCF diet, were you aware of any
>> scientific research into the treatment? Did the availability of research
>> into GFCF, or lack of it, have any influence on your decision to try the
>> diet?
>>
>>
>> Best,
>
>> Jim
>> On Tue, Feb 9, 2010
>>
>> No. Actually, when my son was 17 months old he was just evaluated by the
>> state for Early intervention services for what I thought would be for
>> feeding therapy. I knew he wasn’t making his milestones at the time but I
>> figured since he was so sick all the time it made sense to me that he
>> wouldn’t be hitting milestones when he was throwing up 10-15x per day. I
>> had been through 10 pediatricians and specialist all trying to figure out
>> what was wrong with my son. None of them had answers for me. A local
>> nutritionist at a nearby health food store advised me to try the diet. I
>> thought she was crazy but I had run out of options and was getting nowhere
>> with the mainstream medical community so I tried it. It wasn’t until a
>> month later that it was suggested to me that my son might have autism. I
>> didn’t know anything at all about autism at the time. What I saw was that
>> my son was sick and I figured if he was well, he would be able to function
>> better. I still feel the same way. My son still has spectrum tendencies
>> but diet, nutrition and therapy made the difference between a child with
>> severe issues like aggression, no eye contact, no productive play, no
>> language etc to a child who is functioning very well but has a few quirks.
>> I believe timing of the diet had a lot to do with why he is doing so well
>> at this point. I’m convinced that if we didn’t get him on a GF/CF diet so
>> early he would not be anywhere near where he is today.
>>
>>
>>
>> So to answer your question, I didn’t have any knowledge of scientific
>> research at the time I put my son on the diet. I got most of my info from
>> the nutritionist that suggested it and from websites that discussed celiac
>> conditions. The rest for me was reading labels. To me, removing something
>> from the diet that could be a potential allergen made sense. I didn’t need
>> answers from others at that point. I just felt I needed to try it. I knew
>> it wouldn’t be a matter of life and death for him not to have gluten or
>> dairy. There are many other forms of grains and we don’t need a cow to
>> survive as humans. KWIM? 😉 The immediate relieve my son got on the diet
>> was proof enough it was working and the accidental infractions in his diet
>> were proof enough to me to continue the diet.
>>
>>
>>
>> HTH,
>>
>>
>>
>> Maria
Hi Donna,
I am a family coordinator for people with disabilities and an author of my-card from Canberra. However, here I get to be a Mum!
Our children have food intolerances and allergies. They are three and one and niether is autistic (that we know of anyway). However, by controlling their diets (we stick to the Royal Prince Alfred Friendly Foods diet) we see a huge improvement to their health and wellbieng. They both tend to get sick more frequently and for longer than other kids their age but their excema, concentration, sore tummy, restless nights and gut upsets are under control.
It is really interesting to consider food issues in relation to autism but maybe this is a case where we can see that people who have autism have health issues too – just like everyone does.
Laura
The Etiology of Autism and NICHD Research- Immune Findings in Autism
The following is part of the slide presentation given by Marie Bristol-Power, PhD, who serves as the Special Assistant for Autism, in the Office of the Director at the NICHD, at the March 8, 2001, meeting of the Institute of Medicine (IOM) Immunization Safety Review Committee.
Immune findings in autism
From Warren, et al. (See abstract below)
* C4B “null allele”-25/50 subjects vs. 17/85 controls
* Extended HLA haplotype B44-S30-DR4-14/50 subjects vs. 2/85 controls
* HVR-3 sequence 1-17/50 subjects vs. 2/85 controls
Abstract for Warren et. al.
Autism results from several different etiologies or combination of pathological mechanisms. Mounting evidence indicates that immune dysfunction along with an environmental pathogen may be factors contributing to the development of some cases of autism. One of the immune deficiencies observed in autism is abnormal T-cell mediated immunity. Another is altered levels of certain classes of antibodies (immunoglobulins), including decreased levels of immunoglobulin A and deficient complement activity, based on the inheritance of a null allele of the C4B gene. In addition to the C4B gene, other genes on chromosome 6 also appear to be associated with autism. In the developing child, genetically determined immune deficiencies might increase the risk for autism in 2 ways: (1) A pathogen or its toxins might damage the brain, and (2) the pathogen might trigger an autoimmune mechanism that would interfere with brain functioning. In the mother, immune deficiency might allow a pathogen to persist in utero, damaging the fetal brain directly or triggering a maternal immune response that creates pathogenesis in the fetal brain. (c) 2000 APA/PsycINFO, all rights reserved.
http://www.nichd.nih.gov/autism/presentations/etiology2.cfm
The diet has helped my son with not only Autism but Down syndrome. Did it cure him? NO. Did it make his life better? Yes. My son used to come home everyday from school and scream and cry for 2-3 hours. I would sit with him on the couch and try to help, but there was no help. Before the diet my son could not follow the simplest commands like hand me your cup,etc. We started the diet in April of 2008 and by Sept. 2008 the differences were very notable. My son and I were living in another state doing biomedical intervention and the first night in our rental house I got locked out. My son was in the house. I was frantic because I had never shown my son how to open a door and the oven was on. I was able to raise the window to the house and I asked my son to go to the door and let me in. On the third request my son got up off the couch and went to the door and let me in. I cried because I never dreamed he would be able to do this. This was a miracle a true miracle. Gluten Free/Casein Free diets to work, my son is living proof.
wonderful story Cyndi. I know how ‘stoned’ I get on cow’s milk, speech sounds tumbled, miles away and my brain feels thick and fuzzy. It’s very hard to tune in when one is so tuned out.