Autistic Adventures with Glutamine
Clearing up poor autism related information about Glutamine - by Donna Williams
Someone wrote:
I read somewhere Donna Williams wrote about a glutamate concoction she said made her feel better. Are you familiar with this? I ask because of a recent NIH study that talked about glutamate neurons role in autism. The study was published in the journal Nature Genetics in March and is considered a break through in the genetic mapping of ASD. I would really like to find out more about this.
My reply…
No, not glutaMATE, glutaMINE.
Glutamate in excess damages the brain.
Many people with autism have excess glutamate and low glutamine or they may have low levels of each.
Glutamine counter-balances glutamate and reduces excess ammonia which harms the brain.
Glutamine has nothing to do with gluten and contains no gluten.
I have been on 2000mg L-Glutamine for over 15 years, longer than anyone else with autism who I know has used it.
I was already on dietary interventions since the 1990s and was first put on nutritional supplements- Vitamin C, zinc, multi-vitamins - around 1972-1975 when I was 9-12 years old. I was one of the first known people with autism in the world whose parents trialled the use of nutritional supplements. I have mentioned this in Nobody Nowhere and some of my other works and lectures and attribute this intervention to improved health and language processing at that time and coincided with my transition from echolalia and stored strings into interpretive (meaning based) language between age 9-11 (two sided communication took longer to emerge).
Glutamine is considered an important ‘brain-food’. Whilst it is traditionally a sports medicine, Glutamine is used as a growth factor, used to raise T-cell count (immunity), used as an anti inflammatory (its the building block of glucosamine which is made from glutamine+glucose), as a natural anti-depressant and anti-anxiety supplement, used in difficult to treat diabetes, used in recovery from gut surgeries and in inflammatory bowel conditions, used to treat alcoholism, used in the management of schizophrenia and dementia and as a ’smart drug’ by those with learning and developmental disabilities. It is uses in the management of systemic inflammation including that of the gut and blood brain barrier.
It is NOT suitable for ALL people with autism nor is it effective for ALL people with autism but a 30 day trial usually tells whether it will be helpful or not.
It is not suitable for those who also have muscle wasting diseases.
A naturopath can oversee a 30 day trail of glutamine to ensure it suits the person.
Low or homeopathic doses of glutamine do not seem effective.
Doses should also not be exceeded.
The advised adult dose by the company who makes it, was generally around 2000mg.
I have known of children around 9 generally taking around 1,500mg, younger children taking around 1000mg.
It is generally not recommended for use by those under 15.
Glutamine changes the chemical structure of the brain.
As a consultant over 3 years at a school where a significant number of the children trialled glutamine, I saw children with autism on glutamine who were undersized then grow taller over a year of taking it. I also saw significant developmental and communication improvements in those children whose parents felt it was beneficial to them. This does not mean glutamine would cause the same improvement for all children with autism.
It is a supplement on the treatment protocol of Paul Shattock, a world leading expert in nutritional factors in autism and who is a pharmacologist.
I have been on 2000mg glutamine powder (the powder is cheaper than capsules by the way) for 15 years.
It is purchased from GNC stores in the UK, USA, Australia but probably available through most health food stores.
It occurs naturally in raw fish, raw eggs, raw meat (yuk).
It can be mixed into dairy free margarine, rice milk or other foods but is destroyed by cooking.
It is one of three amino acids which make the essential chelation/immune boosting supplement, glutathione (the others being glycine and cysteine)
Supplementing with some amino acids requires supervision by a naturopath as excesses in one can cause deficiencies in others.
In those for whom glutamine proved beneficial in a 30 day trial, the improvements which may occur within 3 months of starting glutamine may be those associated with improved gut function, improved brain health in reducing toxins crossing into the brain through improving the blood-brain barrier, improved brain health in reducing ammonia accumulation in the brain which causes ‘brain fog’, improved functioning associated with reduction of anxiety and raising mood.
I use 2000mg Glutamine in conjunction with a low salicylate, CF/GF, low sugar diet plus 15 mg zinc, 1000mg Calcium Ascorbate (non acid vit C), mega B complex, calcium-magnesium 1,500mg, chromium 400mcg, Selenium 60mcg and Omega 3 2000mg (as well as a SMALL amount of an atypical antipsychotic which is used in managing co-morbid bipolar/social phobia/OCD/Tourette’s issues).
Naturopaths train for up to 4 years in the study of nutritional and natural medicine on health and development. Pharmacologists are specialists in chemistry. GPs and most medical doctors who have not done further training in nutritional medicine often have only got a few weeks of study in nutritional medicine. A dietitian is also not a naturopath unless they have also studied naturopathy. Ideally, a qualified medical doctor who also has a formal qualification in naturopathy is an ideal person to discuss nutritional health with. These are rare. Most GPs and doctors with no formal training in naturopathy do not believe in the use of natural medicine. Many still do not believe in a significant relationship between dietary interventions and autism unless they are specifically given and read peer reviewed medical journal studies proving such relationships such as those published in publications like The Lancet. As drug companies fund most medical research, there are more published studies in such journals on the relationship between drugs and autism than there is on nutrition or supplements on autism. Drug companies are in direct financial competition with the companies which make nutritional supplements, including Glutamine.
To learn more about my use of Glutamine within a wider treatment protocol, read Everyday Heaven, Autism; An Inside Out Approach, The Jumbled Jigsaw or watch the DVD, The Dietary Wheelchair. You can find information on all of these on www.donnawilliams.net
I hope this helps clear up the poor information floating about.
Sincerely,
Donna Williams
autistic author, artist, composer, screenwriter
http://www.donnawilliams.net
Hello from Canada,
I just heard an interview with you (Donna) on the CBC, from 1992!!! Long time ago. None the less, I have to say that if it was possible to fall in love with someone’s voice, it just happened to me tonight. I sat in my car, silently, and just listened to your voice. I did not care what you were actually saying, I just listened to your voice, and fell in love with it.
Best wishes always,
Tony Hindle in London, Ontario, Canada
Hi Tony,
not sure what to do with a compliment like that so I’ll just say thank you.
I know what you mean about the music in a voice. My husband Chris has one of those chocolate voices and I’d often just smile regardless of what he said because his voice was so warm. I’m even more embarrassed to say you are not alone in what you’ve said and at the time of that interview Mr Gzowski got about an inch high of letters from listeners and many had pulled over on the motorway to just listen… how nice to inspire such madness but I’m sure it was the combo of Peter and I.
I also use gestural signing (a system of ‘home signs’, generally understood by deaf people in my audiences) and people have said this of my voice and signing, they have forgotten my words and just listened to my sound and watched my movements. Ironic given I tried so hard to make interpretive sense via words. Perhaps I should have stuck to jingles and gestural signing
Strangely, it is the meaning in their words that alludes me, so I am always hearing their voices, watching their movements. They look and sound rather symphonic at times.
I write of the ‘music of beingness’ and this is in a voice and in one’s movements. One doesn’t need a shared language to sense it, but it speaks of the soul. Mr Gzowski had a beautiful music of beingness in his movements and voice, he was a toasty person, like an open fire. My husband Chris is too but he’s a techie and not on radio.
I am also a singer and have two albums. The world falls for the voices of singers all the time. I love when Chris sings, even if its out of tune (often) because I love when a soul celebrates life by just being.
Thanks for dropping by.
Warmly,
Donna Williams *)
http://www.donnawilliams.net
Thank you so much for your reply. Since writing you, I have tried to think of a better way to explain the affect your voice had on me. I have decided that listening to you during that interview so long ago, was like listening to a dolphin. I did not have to have full comprehension of your words (although you tried so hard to give them meaning) to understand you. I think you are exactly right that one does not need words to speak to the soul. I was once in Bahamas, and near a pier there were some dolphins looking for some free lunch. I sat there for quite a while listening to them. Of course I did not know what they were saying, but it was beautiful none the less. Perhaps dolphins speak to the soul, and this is why so many people are fascinated by them??
I am sorry to be wasting your time, but you really have opened my eyes to something wonderful…..Thanks!
Tony Hindle
London, Ontario, Canada
P.S.- I am glad you are you, and not a dolphin! I don’t think many dolphins are allowed in a radio studio
I have no problem with the idea of being a dolphin. In fact I used to always swim like one as a kid. I always preferred to swim under the water not on it, enjoy swimming on my back way under the water blowing water from my nose and looking up into a shimmering glass world (never told anyone that before) and when swimming belly down I use my body and feet to propel me like a dolphin does, a sort of wave making effect, works just fine. Maybe I watched too much ‘Flipper’! I loved wearing flippers and a snorkel and would pace in this kit whilst singing (the acoustics of it were fab).
I met a dolphin one day when my life was very broken. I wrote of it in Everyday Heaven. My father had died and my ex-husband announced a few days later he was leaving as it was the day after the 2nd wedding anniversary and he was now entitled to half of everything I’d ever earned as an author (yes, really bad timing) and I was so shocked by life and humans and went to the ocean and out onto a rock ledge and a dolphin jumped out and did arcs in the water a few times, right in front of me. It was wonderful magic and changed my day. Its wild how the born optimist waits for the slightest sign there’s hope.
Anyway, dolphins are lovely.
I heard too the interview on CBC during the night when I have the impression that I think more clearly. I became charmed too and fell in love with the “naiveté” you so wonderfully verbalized. I could hear some of my automated responses in the answers you gave, the fact that I use those to distance myself from the rest made me sad but to know that you were able to bypass the hurdles was a great feeling. Another lesson to be had.
After hearing the interview, I ran to a library to find Nobody Nowhere, and finished it this night, it made me cry, made me laugh, made me think…
thank you so much for another tool to help me in my development.
I wish I could hug you but I know you wouldn’t like it and I couldn’t either…
They say its the thought that counts and I have thought a thousand hugs or more which were in my world of nostalgia and a thousand regrets for not telling I at least thought them. So thank you for expressing the thought.
I’m glad Nobody Nowhere brought you home to you.
Its a wonderful thing its universality did that for so many people.
Such a great light to come from darkness.
Many people changed their lives after reading it
Sometimes they just needed to be found.
There are three more books in that series,
Somebody Somewhere
Like Colour To the Blind
Everyday Heaven.
Sort of like the chronicles of Narnia!
each is a different world.
Mr Gzowski of course was also a writer.
He wrote about his life and was very committed to the Dyslexic community.
Greetings Donna,
I have a little girl who’s 4 yrs old and she was diagnosed at 3 years of age. I recently gave her MB12 shots and now she’s acting really austistic. You might say she has regressed upon starting the shots. Have you heard of them?
Thankj you
E
Yes I have, and to my great horror I’ve met families who are getting these shots for their children who have not been tested as having B12 deficiency. B12 and B6 must be balanced. An excess in one can trigger a deficiency in the other etc. It’s something that should be backed up by testing not given out wholesale based on a shared label.
I have a functional B12 deficiency, but many many with autism do not.
I choose to take oral B12 1000-2000mcg which is a massive oral dose so because I can’t metabolise it well I end up with an uptake of what dietarily would amount to a normal level. I do this to avoid shots and so far my B12 levels are normal this way but otherwise deficient.
Never underestimate either the impact on distress, alienation and chronic self protection responses of an infant repeatedly marched into a strange smelling, clinical environment to have needles stuck into them. Adding trauma to autism is never a good mix, especially if a child already struggles to trust because of challenged processing and sensory perception.
Sure, its essential WHEN its essential and for kids with immune deficiency and marked functional B12 deficiency that may be the case, so you make it as home like and humanising atmosphere as you can to get shots. But this one-size-fits all rubbish drives me nuts about the field. Its laziness, money grabbing and desperation often based on scare mongering and false or partial information.
Strategies to help those with autism should be based on researching what’s going on with EACH person, or if one wants to TRIAL something said to work with ‘autism’ then a TRIAL is a trial, not a life long contract. If it doesn’t help after 30-60 days, do something else.
For a good look at the incredibly diversity among forms of autism and their hugely varying underlying causes and the approaches and treatments addressing each, have a look at The Jumbled Jigsaw.
http://www.donnawilliams.net
You will be surprised of the propaganda DAN doctors are using for the use of MB12.
They swear by it! They claim that only 5% of the children placed on these shots have a negative reaction.
Well my child has had a negative reaction and they call it a special case. Meanwhile there has been NO studies of what to do when this happens and how long it will last.
My daughter went from NO headbanging to headbanging the 1st week after introducing the shots, her language did explode, but she is now covering her ears and buring herself under covers and pillows. She has vocabulary stiming, and cries for no apparent reason.
She has potty accident after being potty trained for two years with NO accidents. She’s now back to pull-ups.
I don’t know when she’s having a tantrum or when she’s having a meltdown.
It brakes my heart to see her this way and No one will help me.
Anywords of encouragement will be greatly appreciated.
Nobody, Nowhere was the 1st book I read after her diagnosis followed by Somebody, Somewhere. NOw I’m reading “Like Color to the Blind”.
I can’t wait for the movie to come out! When will it happen????
Lizzette in Southern California.
It worries me that a 5% incidence of negative reactions is considered worth risking when the test for functional B12 deficiency is simple and non-invasive - its a urine analysis for Methylmalonic Acid levels (which indicate an inability to metabolise B12). If we said that only 5% of children had negative reactions to vaccination would we equally be expected to accept that? Hmmmm.
As for what you’re describing. Covering her ears as she is may be due to the onset of Tinnitus which can be related to B vitamin deficiencies, perhaps particularly if excess and unrequited B12 triggered a B6 deficiency. I’d suggest a full nutrient analysis.
As for ‘vocabulary stimming’ have a look at ‘Verbal tics’ as part of Tourette’s. Tourette’s can be triggered by brain irritation and seem to be reduced by things like B6 - again if excess B12 triggered a B6 deficiency it’d be worth finding out. Certainly tics come out under heightened stress.
Crying for no reason in the context of sensory hypersensitivity and what may be ‘verbal tics’ within Tourettes (also see ‘vocal tics’) may indicate there’s not only a co-morbid compulsive disorder broken out for the moment, but a mood disorder may have onset as well. These two could trigger if brain chemistry had recently become highly imbalanced, and may iron out if it rebalances.
Enuresis is often associated with Salicylate Intolerance but could also happen in heightened stress and overload. Lack of B6 could result in poor processing and heightened stress increasing overload and excess B12 can cause subsequent deficiencies in other B vitamins. I’d get the naturopath to do what the Dan doctor seems not to have done and get the nutrient levels tested.
Alternatively, she may have ‘woken up’ and be struggling with the jolt and overload associated with that.
Donna you say:
Crying for no reason in the context of sensory hypersensitivity and what may be ‘verbal tics’ within Tourettes (also see ‘vocal tics’) may indicate there’s not only a co-morbid compulsive disorder broken out for the moment, but a mood disorder may have onset as well. These two could trigger if brain chemistry had recently become highly imbalanced, and may iron out if it rebalances.
HOW do you rebalance? I’m desperate here! It’s been a more than a month since I last gave her the shots. I also just found out that I was told to give her too much of MB12.
Her DAN is clueless. I wish I would of never taken her there.
Thank you sooooo much for your responses. I feel previlleged.
Elizabeth
If she’s covering her ears, it may also be that her aural sensitivity has increased, and she’s having trouble filtering out unwanted excess sounds.
I don’t know if I’d be considered to have enough autie/aspie traits to be “diagnosable”, but my uncle and brother are both on the spectrum, ad the rest of my family have a sprinkling of “traits”.
I get trouble with sensory overload when I’m feeling stressed. Especially with regards sound, crowds and smells. I tend to either “shut down” sometimes to the point of being unresponsive and non-verbal, other times I just feel like screaming and striking out.
If she’s covering her ears AND burying herself in blankets, combined with the other things you mention, it sounds like she’s overwhelmed to me. With regards the potty-training, ANY child can regress on that one when they’re under heightened stress.
Hi Lizette,
I’m not going to start consulting here on the blog as consulting is something I do separately and professionally in booked time (I’ve been a consultant for 12 years and have worked with over 600 people on the spectrum). If you’re interested in a consultation to cover some of these bases you can visit http://www.donnawilliams.net and go to ‘autism’ then ‘consultancy’ and you’ll find my email consulting service. I’m not a doctor, nor naturopath though I have 20 years of involvement with practitioners in natural medicine. I’m a qualified teacher and you’ll read there what I do as a consultant. Given its a year since the B12 shots, I doubt that what’s happening at present is a direct result of those. I would certainly work with you to do my best to get to the bottom of what is and isn’t going on and direct you to those best able to work with specific issues as well as train you where possible in environmental strategies which may help.
All the best in any case.
I would love to have you as our consultant! I didn’t even know we could. There’s a website that I would like you to take a look at regarding MB12 and the doctor who came up with the protocol. IN this site you can look at Autistic kids who have lost their diagnosis due to MB12. It’s very interesting and I thought you might get a kick out of it.
oxoxo
Lizzette
P.S I’m waiting for a paycheck and as soon as I do I will consult with you.
Hi Donna
My experience with biomed interventions has been varied - dietary changes have helped, but a GP autism “specialist” and his carte blanche approach (liquid zinc and evening primrose oil) sent my daughter off her trolley after only four days on the supplements and it took two weeks to calm her down. He even recommended chelation! He didn’t test her for any deficiencies before putting her on zinc. I now treat any recommendations with extreme suspicion. That being said, I am interested in the glutamine - my daughter is high functioning with ADHD symptoms that cause her to become extremely hyperactive, sometimes out of control giggling for hours on end. I am interested in the glutamine as a mood stabilizer, as our sensory diet and behavioural management (positive behaviour support) don’t seem to be helping her to calm down. Nothing gets through to her when she is on this “high”.
I’m sorry about your experiences.
There is a simple zinc taste test health food stores tell to tell if zinc is actually depleted.
Those tasting it without low zinc should find it relatively tasteless.
Those with zinc deficiency have a reaction to it’s seemingly metalic taste.
White spots on the fingernails are also a common sign of zinc deficiency.
Evening Primrose Oil is known to cause hyperactivity in some people and contra-indicated in some people with epilepsy. Omega 3 fish oils by contrast are called Natures Lithium and are not found to cause hyperactivity.
If she’s quite ADHD, I think it could be time to take a good look at a good low salicylate diet. On high salicylates I’m like someone on cocaine. I am also highly sugar sensitive. I have to keep both low.
As for Glutamine, if she’s manic, it does have anti-depressant properties, so anyone tending toward mania may find its best to start low and run it alongside fish oils as a mood leveller.
Of course feel free to run this buy a naturopath as I’m not one.