Guest Post by Dr. Heather Philp – How Our Daughter Sheds Light onto the Root Causes of Autistic Spectrum Disorder

May 17, 2014 in Categories: , , , , , , , , , by

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P5150124rev2Dr. Heather Philp is a Scottish scientist living and working in Iceland where she recently completed her PhD. Her undergraduate degree was in Zoology with a special focus on animal behaviour & communication. Later she returned to Scotland for her MSc in Marine & Fisheries Science at the University of Aberdeen. Her doctoral degree focused on the physiology & behaviour of crustaceans. She worked full time during her PhD and took two small breaks to have two small children who are now four and two years old. For the past 18 months, Heather has been researching the mechanism by which certain foods trigger autistic behaviours – stereotypy, rituals, withdrawal – after her daughters ASD symptoms faded with dietary modification. There are a growing number of cases in Iceland alone where children with ASD, ADHD and other neurodevelopmental disorders have become asymptomatic following elimination of certain food items from their diet – cow’s milk, gluten or sugar, for example. She is now applying to universities around the world for a placement to advance her research with samples from the wider community. She has a long-standing love of good food that is sensibly sourced; she grew up on a farm and some of her family are fishermen so quality products came naturally to the table when she was younger! Her husband is a chef and she is also a passionate cook so moving her family to a healthier diet has been fun. Her focus is on ensuring good nutrition and a varied diet while avoiding foods that she has found to cause inflammation-related problems. She runs the Facebook page Food For Thoughtism and can be contacted there.

I’ve come to realize over the last five years that when you become a parent you are given access to a secret super-power. You find that you have the strength to do pretty much anything when it comes to protecting your children. For example, I’m an extremely shy and private person. People generally don’t see it straight away (if at all) because I hide it well behind my great big laugh, the one that simply erupts… often at the most inopportune moment; I can find humor in just about any situation. However, there is a good reason why I live in one of the most remote places in the world, a little island off the coast of Iceland, and it’s not just the scenery… although that plays a role too! This week I did something so bold and out of character that I surprised even myself. I’ll get to it in a moment.

You see, I am a scientist and I specialize in animal behavior. I moved to Iceland from Scotland to undertake a PhD in the biology of lobsters although previously I have worked with a vast range of creatures, large and small, beginning on the farm that I grew up on. I am trained in conducting behavioral observation studies which I have undertaken on a variety of animals from wolves to deer to fish and crustaceans. So for me it was no great challenge to recognize each of my daughter’s autistic traits as they appeared –delayed onset of smiling, the formation of rituals, ‘face-blindness’, her struggles with social interactions – and to develop techniques to help her around the things she found most difficult.

Heather_Eden old

 

Discovering our first diet link: cow milk protein

What was hard to get my head around initially is the way that certain foods affect her condition. It started when a friend from the food and biotech institute where I was working at the time sent me a link to an Icelandic news article. The parents of a little boy, Sindri, had seen relief from almost all of his debilitating symptoms when they eliminated cow’s milk from his diet. I’ll never know what possessed me to do something I have never done before – to undertake a course of action without thoroughly researching ‘what science says’ first. I can only imagine looking back that it was desperation. Things were really hard at that time. However, I’ll never regret doing it because just like Sindri, all of the problems my daughter had just stopped: the meltdowns, the withdrawal, the need for order, even the compulsive, machine-like way that she ate.

It took about 6 weeks but more through circumstance than anything else. I was very halfhearted about it in the beginning and simply removed milk but kept in cheese and the occasional Icelandic yoghurt. This was for about 4 weeks and while I perhaps noticed a little improvement, nothing too much. Then we took a trip to visit my family and I switched her to goat’s milk with which I was familiar with because my mum and brother had used that when I was a child due to their eczema and psoriasis. During that time, her symptoms simply lessened day by day until they were no longer there. She started to fall asleep without her ritual of lining her toys and giving me a hug-kiss-stroke of my arms in exactly that order. Her hoarding stopped and most significantly, her nightmares – the disturbed sleep – stopped and for about the first time ever, she began to sleep long and deeply.

The second diet link: soy protein

When we returned to Iceland a fortnight later, I advised the school that we had taken cow’s milk from my daughter’s diet with a very good effect on her behavior. At the time, goat milk was not available in Iceland so we did what most other people do when switching from dairy – tried soya ‘milk’. Over about 4 days, her old behaviors started to return – she began to hoard, lick things, line her dolls…and there was the added symptom now of a frequent and urgent need to urinate which the teachers at school suggested might be a bladder infection. However, in the absence of any accompanying signs of infection I was not convinced and researched it myself. I discovered that certain proteins in soy show cross-reactivity with casein from cow’s milk and while this specifically referred to cases of allergy, I wondered if it might relate to our situation too.

Thus, I began my journey into resolving the mechanism by which particular dietary components trigger her autistic traits. I realized from the reaction of the first few people I discussed our experience with that for people to accept and benefit from it, resolving the mechanism was vital. Without that, it simply sounds too implausible and to be honest, I can completely relate to that – I was and am an anti-snake-oil person. I have always needed evidence and understanding before I can accept something. But what separates me from most now is that I have been humbled by what I have seen with my own eyes. I had been quite arrogant in my scientific surety of what were well-established facts. Now I like to check the quality of the facts presented in the published literature myself – what was the sample size, what methods were used to collect and analyze the data, where are the gaps in the study that might mean the researcher overlooked something important?

Eden1As for my daughter, she continued to improve over the next few months. Most of her debilitating symptoms simply went away, others she had to unlearn. One of the most important and for us was that she began to show affection for her father again. Just prior to starting the autism evaluation process she had withdrawn further and further from him, from both us in fact, but much more noticeably from him. If he spoke to her with anything less than a quiet voice, if he reprimanded her, if he tried to cuddle her, if he offered to clean her teeth or put her to bed, anything, he would likely be met with hysterics. It began to depress him a lot and he started entertaining the wild idea that she simply did not like him and he would have to accept that as the way things would be in the future. It was awful.

Now, she talked…constantly (we even joked that we would start giving her milk again just to get some peace), she climbed all over him, hugged him, asked to be tickled or chased or played with. One day I even saw her in the garden copying the neighbor’s child next door by shouting and waving to someone passing by. If you had told me any time previously that my daughter would be not only talking to a stranger but initiating contact, I simply would not have believed you.

Identifying the pattern

Of course there were inevitably accidents, especially in the early days, when she was given something containing either cow’s milk or soya and each time her old behaviors would reappear. I decided to construct an ethogram, something that is used in the study of animal behavior. It’s basically a list or inventory of behaviors and observations that includes when they appear. Then I began to give her controlled challenges – a glass of milk, piece of cheese, cup of yoghurt. I also started a diary where I recorded everything that she ate and how her mood and behavior had been; her kindergarten had kindly been doing the same. When I suspected something of triggering an onset of her old behaviors, I would wait for at least a week or so and challenge her with it while making sure that everything else she ate were things that had been tried and tested as non-reactive.

This way I was able to identify particular foods that caused a response and was also able to establish a basic pattern: you would see the changes within around 6 hours of consuming the trigger food. Her mood would start to change and she would become tense, controlling, a little aggressive and hyperactive. By that night, she would show the first signs of inflammation around her bottom and genital area. She would usually have nightmares through the night. The following day, she would be very rigid in her thinking – things had to be done her way. Her specific rituals would appear and she would become resentful towards her father. This would continue on the next day.

Two days following she would be pale, weepy, depressed and anxious – for example, one time I wrote in my diary that today Eden hid under the table so “You can’t all look on me”. At school, she would over-react to comments from the other children, responding with tears or aggression instead of laughing. And she would be extraordinarily fatigued for this day and the one after, yawning excessively through the day and at the table, barely able to hold her head up at dinner. It was particularly noticeable on our walks; she is an extremely physical child but on these days she would be tearful, clumsy, asked to be carried or walk slowly, dragging her feet.

The “Ah Ha!” Moment: the mechanism linking diet to ASD behaviors

Eden2

It took me a shamefully long time to recognize this pattern considering the type of biology that I do – this is a classic stress response, with the stressor being the inflammation. I know this well because for six years my research has involved developing physiological and behavioral indices of stress in animals. These are then used to assess the capacity of the animals to cope with environmental change. In fact, you could say that my specialties are stress and behavior; looking back over my lifetime of working with animals one would see that almost all of it has revolved around this.

A stress response is a specific type of reaction to a stressor which occurs when one or more normally regulated systems in the body is perceived as being out of control (or about to be). Imagine that the body is like a piece of clockwork with each individual gear or cog reflecting a different body system – the immune system, the circulatory system, the nervous system, etc. When you present a challenge to an individual system, you place some ‘stress’ upon it. For example, when you are exposed to a cold virus, it is a challenge to your immune system…it places it under some stress. Each system has some capacity to cope with this stress; that is precisely what its function is, to deal with the challenges your body might face.

However, occasionally a system encounters something that it perceives as being greater than its capacity to cope with. This places too much stress on that particular system… and because all of the gears are linked, the whole clockwork mechanism is affected. Like winding a watch too tight and bursting a spring somewhere inside. This is a stress response. It involves: one or more of the body systems, a challenge that seems to be or is greater than the body can regulate and a cascade of neural and hormonal reactions that go on for a prolonged period of time and can be seen in behavioral and physiological output.

A watch-maker who is experienced in his craft can simply listen to the way a broken watch does ‘tick’ when it should ‘tock’ and predict very well which gear has slipped and is causing the problem. And in the same way, someone with experience in observing and interpreting patterns in animal behavior can recognize and understand specific ones that might not be immediately visible to the untrained eye. With my daughter, I couldn’t see the pattern in the past because each sequence overlapped with others; the changes in her behavior last for four to five days. Changing her diet caused all of her autistic traits to fade away and then when I introduced dietary challenges I could see it for what it was: a stress response induced by an initial inflammatory reaction in her large intestine to certain foods.

Constructing the case study

Behavior observation is a well-established method for determining aspects of physiological or mental state (indeed, it’s the basis for an autism diagnosis). However, I wanted to present a case study where the objective nature of the data was more intuitive. Changes in skin conductivity provide a useful measure of activity or ‘arousal’ in the sympathetic nervous system. This metric is widely used in psychological research into emotional states and stress physiology. Depending on the type of monitor one can record almost constantly and so that is what I did. I put a monitor on my daughter and gave her dietary challenges with foods that I had previously identified by behavioral means as triggering her symptoms.

In the first right image, you see the recording from the monitor during a normal, uninflamed 24 hour period (the blue line is daytime, the red line night time and the peak is where she is having a restless dream), and on the left it is from a 24 hour period during an inflammatory flare. You can see that the reading is almost off the scale. She is in a state of stress.

img heather philp

In the second image, the left side shows how her behaviors change in intensity and occurrence over the five days following a dietary challenge. A darker shade refers to the time when the behavior occurred more frequently. So, here is the pattern I talked about earlier: dietary challenge->inflammation->aggression, hyperactivity, the presence of rituals (lining toys, being first), withdrawal->depression & fatigue. Then next to this image is the recording from her monitor. Nervous system activity supports the behavioral observations.

heather phlip img 2

A new paradigm for ASD

To me, the implications of this are staggering. Common dietary components that trigger an inflammatory reaction that is by all accounts barely visible unless you are looking for it, and a stress response that produces the behavioral outputs of ASD. Even in one child this is incredible and if I thought it was just her, I might have been tempted to stop there. Perhaps. But during the last 18 months, I have met so many people who have shared a similar experience. They have changed something in their child’s diet – gluten, lactose, sugar, dairy – with profound effect. In fact, there is even a current trend in the published literature linking inflammation and gut function with neurodevelopmental disorders. Physiological stress may be the final piece to the puzzle, explaining the mechanism by which these factors can impact neural health.

This could offer a whole new paradigm on the way that ASD is viewed; under this theory, the stress which is a major part of life on the spectrum becomes not a symptom but a major cause of the pathology… and it has a physiological trigger. Identify this and you can develop a personalized intervention strategy or even advice on what to avoid from the get-go. My feeling is that over the next period of time, we are going to see that as in other animals, the two great modifiers of our physical and mental health are inflammation and stress. The exciting thing is that there is something that you can do about it.

Moving forward to help change lives

The first step is to replicate these findings in the wider community. GI aspects of autism have been largely neglected in research to date despite the fact that they can be very disabling. The result is that it’s only now that the research community are linking digestive health to mental health. There is some focus on the gut microbiome which I believe will be very productive in terms of promoting resilience against the impact of certain proteins on the digestive tract wall. However, inflammation is an immune response and I think that ultimately we will see that it is the immune system that is the cog in the clockwork under too much stress.

And here is where we get to the bold and uncharacteristic thing that I have done. I see a chance to do something that will really help people. First and foremost, it will help my daughter for whom no proper description of this new aspect to her condition exists, and it will help those like her. Several months ago I arranged a placement at an autism research center to explore my findings in a wider context. Unfortunately the situation has changed there and the lab is now at full capacity. Now there is no longer space for me. So, I filmed the presentation I planned to give the research team there describing my findings and explaining my proposal and last week I sent it to autism research groups around the world, asking for a placement. See. Bold…and if you know me, uncharacteristic.

I have heard back from around half of them now and although no one is yet able to offer me a place, the response from those who have replied has been universally encouraging: “This sounds compelling and promising…” “Your work sounds very interesting and of potential…” “…with your permission, I would like to bring your studies up with my group”. What I have done flies in the face of convention. Typically, what should have happened is that I returned to square one, resubmitted a grant application to a research funding body until I acquire financial support, then taken my proposal to potential research institutes one by one until I find a placement. The whole process could take upwards of a year.  But I don’t feel as though I have that time. To my mind this is priority research.

1 in 68 of our US children have been identified with autism and the rates are not much lower in Europe… many, many more fly beneath the diagnostic radar. This does not seem like a time to wait, a time to follow convention. I am not just a parent asking that more research be undertaken, I am a scientist myself. I don’t just want to see this work done, I want to do it because at the heart of it all is my child and so there is no one more committed to following through this theory than I.

I hope to inspire and collaborate on well-designed clinical trials to further our understanding of how diet factors may act as environmental triggers for ASD. However, it’s just as important to inspire parents to seek out information on how to optimize their children’s health. There is a growing body of scientific evidence linking the presence of certain foods to a range of neurodevelopmental conditions. So be bold. Be super. You are your children’s first line of defense.

View the presentation with the full details of the case study and hypothesis:

Comments

Thank you for posting this. It was a wonderful article, and as a mother who also chose nutrition to heal my children I can absolutely relate to her story. It is amazing how the right foods can be medicine to the body, and the wrong ones can absolutely send a child off into another world. I hope you get to continue your research Dr. Philp.

Such a great article. I was recently reading an article about Dr. Wahls at the Daily Beast. The article was in her favor but so many of the commenters wrote in various iterations of “there’s no science there, so I think she’s crazy and just trying to make a buck.” They all need to read this article. Unfortunately many of them will have to get to the brink before they take a chance based on faith and (gasp) find health without the support of controlled studies.

This is amazing! I just don’t even know what to say, you HAVE to find someone to fund this. I have had a similar experience with my son but it’s so new and us researched its lonely and isolating. As parents supporting our children who are struggling we need support from drs and family and friends and some reassurance from the data not just a stab in the dark. I truly hope that you can get to work on this soon and that your daughter continues to feel well.

Have you found a door open at Texas A&M Univeristy in College Station, Texas? It’s called Texas Autism Coolaborative, in school of Education and Human Development. Google autism.tamu.edu
I don’t know anyone there but hopefully they’ll make a place for your study.

WOW! this story is really moving – I hope it is ok that I posted the links to this and her FB page on my FB page. I feel it is very important for my friends who have ASD children to read this. It is quite remarkable how many people I know that have ASD children. It may actually change how things happen in there homes, and increase the quality of life not only for the child, but for the parents as well. Although, I do feel bad that Heather had to watch her child suffer, it must have been heartbreaking for her.

My Opinion on the mention of the GAPS Diet Above – I am pretty sure since Heather is a scientist, her motivation is to create a “scientific study/paper/report” so she can publish the information with ACTUAL PROOF that will help get the recognition it deserves in the Scientific/Medical community. That way it won’t get “Poo Poo’ed” by her colleagues.

Heather, Good luck with all your research!!!

This is wonderful! My 5 year old daughter has autism, and through following the Specific Carbohydrate Diet (very much like GAPS) we did strict food elimination to identify the food triggers that were causing her disturbed sleep, agitation, and self injuring behaviors. After two years on the Specific Carbohydrate Diet, my daughter has lots most all of her autism related traits and is almost indistinguishable from her peers in her skills. Reducing inflammation through tailored diet is hugely important in helping individuals with autism reach their potential. All the best in your research, Heather!

This is a very touching story of a healthy diet making a huge difference. I hope Dr. Philips gets her funding and a lab to work with.

Congratulations on your “Discovery” however it isn’t new. Many of us have known for many years of this cause and effect. Genetic modification is even making it worse. I know of people that can pick up a change in a product with GM added by just the way their body reacts. We gave up telling people years ago because they just wouldn’t believe this could be the case. The biggest obstacle to the truth believe it or not (as you have just found out) is ….other scientists. Many know “Everything” but actually know nothing.
Good luck with your research. The human race certainly needs it. Go for it Girl!!

Heather – Have you seen this research – Can the Pathophysiology of Autism be Explained by the Nature of the Discovered Urine Peptides?
http://atcnts.com/wp-content/uploads/Pathophysiology_of_ASD_and_urinalysis.pdf
I’m not an academic but it looks like it overlaps with your findings.
here’s an extract:The extensive regulation of the immune system, by
neuropeptides, has been reviewed by Singh (1995).
Exorphins would easily react with opioid receptors
on immuno-competent cells, and an effect of the
antagonist naltrexone on the CD4/CD8 lymphocytes
in autism has been found (Scifo et al., 1996). A series
of immunomodulating peptides are formed from
casein (Migliore-Samour and Jollet, 1988). Thus
depressed lymphocyte responsiveness in autistic
children (Stubbs et al., 1977) could easily be
explained by a dietary aetiology and exorphins in
particular

Hi Heather, really brilliant & inspiring article. I have a son with ASD. Reducing wheat in his diet certainly helps with his gut issues but I can’t quite work out if it has a behavioural effect. Is there any way of having him tested to see what foods he shouldn’t be eating? I’m a single mum, I work full time and my son is at senior school, so I’m not going to be able to do a food / behavioural analysis like the one you describe. Do you have any thoughts / suggestions? I’m a UK resident.
Thank you

Cyrex and Alcat testing are the ones you’ll hear the most about, although no food test is as thorough as an elimination diet. If any foods do come back positive on any allergy test, he should definitely avoid those, but false negatives are fairly common. – Christina, Sarah’s assistant

I’m an adult with Autism Spectrum Disorder, who happens to have a ‘special interest’ in functional nutrition. And, I can tell you that diet makes a huge difference in my daily life and has for years. Don’t forget that adults living with ASD are a great resource and can tell you exactly what works and doesn’t from personal experience. I’d encourage you to engage with the actual ASD community (ie. people living with ASD and experiencing it first-hand), not just parents of young children who have autism. I think it would add value to your research if you spoke with us, not just about us. Like another poster said, these ideas are not really new, they just haven’t been as widely studied as they should be.

Has the author investigated the large intake of glyphosate associated with these foods, assuming she is eating conventionally of course?

Please consider that it may not only be simply the elimination of the offending proteins that is causing improvement, but also the elimination of the high levels of glyphosate commonly used on and found in these items that is allowing the gut and it’s microbiome (and thus the immune system) to heal.

Glyphosate is sprayed on fields before planting, again at high rates on GMO grains to rid the fields of weeds, and again before harvest to accelerate seed drying. Glyphosate is also used as a desiccant for non-GMO grains and legumes.

GMOs have been developed, not to increase crop yield or nutrient value, but to enable plants to withstand the larger amounts of glyphosate needed to combat weed resistance.

Conventional dairy/beef/pork/poultry producers feed animals GMO grains extensively. Glyphosate residue bioaccumulates, especially in fatty tissue and dairy fat.

The only way to insure that you are not eating glyphosate is to buy organic.

Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseases

http://www.mdpi.com/…-4300/15/4/1416

“Glyphosate, the active ingredient in Roundup®, is the most popular herbicide used worldwide. The industry asserts it is minimally toxic to humans, but here we argue otherwise. Residues are found in the main foods of the Western diet, comprised primarily of sugar, corn, soy and wheat. Glyphosate’s inhibition of cytochrome P450 (CYP) enzymes is an overlooked component of its toxicity to mammals. CYP enzymes play crucial roles in biology, one of which is to detoxify xenobiotics. Thus, glyphosate enhances the damaging effects of other food borne chemical residues and environmental toxins. Negative impact on the body is insidious and manifests slowly over time as inflammation damages cellular systems throughout the body. Here, we show how interference with CYP enzymes acts synergistically with disruption of the biosynthesis of aromatic amino acids by gut bacteria, as well as impairment in serum sulfate transport.”

Dear Heather, I admire you tenacity, and am sure you will find the research post you need to pursue this.

I had a similar experience with my son, not ASD but lack of focus and organisation ruined his school education (there were murmurings of ‘learnng disability’ but his symptoms were not considered severe enough for him to be statemented and to receive diagnosis/support). This was the same story for my brothers and myself – in spite of measured IQ in the top 5%. This is now happening to my nephews.

My mother and I have discovered through elimination that we have extreme, systemic reactions to milk and gluten containing foods. Hostility from our GPs meant we were never properly assessed for coeliac disease.

My son screamed for hours if I consumed cows milk when I was breast-feeding him and I was sure there was a dietary cause for his behaviors when he was older. General hostility to dietary manipulation meant that, apart from keeping him off sugar, I didn’t have the support I needed to trial him on a dairy-free diet (his bones will break, he’ll get rotten teeth, you have no right to impose your dietary ideas on your son…). My son has grown up with various symptoms, poor focus and concentration, Tourettes, OCD, depression, keratosis pilaris, all of which come and go as if there were an environmental trigger, and all of which have affected his quality of life.

My son and I are both achieving well now, thanks to the development of coping strategies. I now work in research myself and I will let you know if I see any opportunities that might suit your project (and I will share your presentation). You have the potential to alleviate so much preventable suffering – this needs someone with the energy required to push it up the research agenda. Good luck!

Thank you for this article. It got me excited. I’ve been doing the GAPS diet with my son and after 6 months on intro I’m burnt out, broke and we’ve had amazing and odd results, but also unexplained regression. We’re just stuck and I’m such a mess myself that its been hard to rally. In my opinion any research done on this is awesome and valuable. It seems every child with Autism comes from parents with varying issues and the causes of all are often similar, but unique and can be treated by eliminating foods different to each individual. And there are unique deficiencies, allergies, sensitivities to who knows what, leaky gut issues, difficulty getting good food and fat, etc. And step that sheds more light to the gut – brain connection is a good one. Bravo!

Katie, we where having mixed results too, the keys I think for my son are super low sugar including fruit and honey, plenty of sleep and we added a supplement called dmg which seemed to make all the difference. We still miss things some of the time, let him have too much sweet or he gets a food he doesn’t tolerate by accident but it seems like that has brought him to a base line. It does take sometimes months to recover from these slips depending on what it is but I am starting to see the light after 4 years. Good luck with it, there is a yahoo and Facebook group that might be helpful for the support.

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