gluten/dairy free diet for daughter, anyone else try this?

Post Reply New Topic

I tried the gfcf with my daughter and felt initially there were very positive effects (far more communicative, mood better). But it was not sustained, or not the fantastic degree I initially saw, so that was disappointing plus she became very anti doing it. Now we have a bit of a compromise, hugely reduced gluten , but she gets her roll to take to school which seemed very important to her. I personally feel clearer headed and more energetic off gluten. I still have milk in my coffee and tea though, and cheese, (on rice cakes) but she never has milk by choice, and the occasional bit of cheese.
Btw, Mama to Grace, my daughter had terrible eczema for years, and in particular mouth eczema from the ages 4 till 11. Really really bad, nothing helped, and I tried everything, her mouth was a terrible state, used to bleed and crack. Finally what did it was protopic, its not a steroid, and we used a minimal amount. It was a lifesaver, and I will sing it's praises wherever I go. She now has perfect beautiful skin and if gets the occasional itchyness behind her knees a miniscual amount of protopic does the trick.

There are two reasons why someone on the autism spectrum may benefit from a gfcf diet:

1 ) As DW_a_mom says, because a significant minority of the population as a whole are gluten intolerant to some degree: 1% of the population are celiac, 10%-15% of the population have elevated levels of gliadin-antibodies, and between 7% and 20% ( depending on which studies you read ), have symptoms of gluten-intolerance.

Symptoms vary, and can include any or all of the following: gastrointestinal problems, ( alternating constipation and diarrheoa, or chronic diarrheoa or constipation, bloating, "sore"/inflamed guts, etc ), fatigue, weight gain/obesity or weight loss, gluten ataxia, peripheral neuropathy, and other neurological effects, and the two main co-morbids; diabetes and thyroid disorders, as well as headaches, depression and anxiety/stress, irritability, skin disorders, among other things, including the many serious mental and physical health problems that can arise from the chronic vitamin and mineral deficiencies often caused by disturbed intestinal function, ( which can also be the result of fructose malabsorption and FODMAP intolerance, from which up to 40% of the population suffer to some degree, ... and wheat is very high in fructans, a fermentable oligosacharide/FODMAP ).

2 ) The other far more "autism specific" reason why people on the spectrum may benefit from a gfcf diet is that according to two studies, ( a pilot study in 1997 and another far larger study publ in April 2010 ), a subset/36.7% of people on the spectrum have unusually permeable intestines, compared to just 4.8% of the general population, and it is suspected that this permeability allows the passage of unusually large amounts of the food opioid peptides present in casein and gluten ( and no other foods apart from, oddly, spinach ), opioids which have far reaching and powerful effects on brain chemistry and on both mood and cognitive functioning.

I personally have found that cutting out both gluten and casein massively improves not only my mood, ( I no longer suffer from previously recurring mood-disorder and depression ), but also my ability to organise, sustain and complete long-term projects, to carry out mundane daily activities on a regular basis, to engage in and even enjoy what otherwise have tended to seem like tiresomely and rebarbatively small fiddly tasks which go nowhere on a day to day basis but which have very big rewards when maintained over longer periods.

Cutting out gluten on its own, three years ago now, ( after over 10 years of on-off exclusion dieting ), had an effect on my mood, but cutting out both of the food opioids ( casein and gluten ) at the same time has a clear effect on my executive skills as well. Last year I gave a presentation at Autscape ( on diet and mental health in fact! :lol ), which took me months to prepare ( research, writing, and then giving it ), during a period of gfcf diet, ( dairy exclusion as well as the gf ), and this November, having gone gfcf again in mid-October, I wrote 50,000 words for NaNoWriMo, and, still gfcf, I now plan to continue with NaNoFiMo, ( "finishing month" ) for another 30,000 words, to finish my novel ( which I intend to edit in March with NaNoEdMo! :lol )

This sort of sustained effort has always previously been beyond me. ... I think I must definitely be one of the third of people on the spectrum with unusually permeable intestines! :lol

It takes 5-7 days for gluten and casein to leave the intestines/guts, and this will already have an effect on one's mental state, but it takes another 3-4 weeks for casein to leave the other organs, and up to 26 weeks for gluten to leave other body organs, especially the liver, so the complete opioid-free effects of a gfcf diet will probably not be seen for about 6 months. This means that there is little point in an on-off gfcf diet, and also that merely *reducing* intake of gluten and casein may simply result in someone ingesting a "maintenance" dose of their "favourite" drug on a daily basis.

NB!The recent study on intestinal permeability found that there is no correlation at all between intestinal permeability and gastrointestinal problems, nor is celiac disease or gluten-intolerance always accompanied by GI issues, so an absence of gastrointestinal problems is no indication that someone is ok with gluten, or gluten and casein.

One classic sign that someone may have a problem with the food opioid peptides of gluten and casein is that they seem addicted to these foods, crave/demand wheat and dairy based foods, and show little or no interest in eating anything else, exactly like an addiction, ie. a "picky eater", who loves wheat and dairy foods to the exclusion of all else is almost certainly being affected by food opioids.
.

PS. The reason for a "plateau" effect when going completely gfcf, ( which catbalou mentions ), and which can be discouraging and/or misleading, is that after the initial extra clarity, energy, stability, improved mood, focus, etc on cutting out food opioids there is often a period of withdrawal symptoms, especially in the case of gluten, which, ( as I said above ), can take up to 26 weeks to leave the body completely.
.

You know have yet to find a decent gf breadroll that is very like a wheat one in consistency, for dd to take to school, that would be great. Forget baking, me and baking just dont happen. Otherwise we're eating tons of rice, potatoes and gf pasta and that maize stuff that solidifies when you stir and cook it, the name escapes me. And other stuff of course but those are out carbohydrates mainly. Not saying we'll stay like this forever, but for the moment it seems to be workable.

PPS. The reason why this subset ( 36.7%/a third ) of people on the autism spectrum with unusually permeable intestines may experience radical improvements in executive function on a ( long-term consistent ) gfcf diet is because constant/chronic exposure to opiates/opioids deregulates dopamine pathways.

Dopamine is necessary for long-term planning, for imagining and taking into account "the future", for accurately evaluating both the long-term consequences ( good and bad ) as well as the short-term "bad" consequences, of our actions.

Dopamine is what makes us capable of tolerating as well as organising and maintaining short-term discomfort/unpleasantness/"work" for the sake of a long-term goal, of accepting and putting up with effort, anxiety, risk, "no immediate reward", etc because can "see" and "value" the later rewards. It also enables us to respond appropriately to/"learn from" mistakes, etc.

People with unusually permeable intestines, ( a third of people on the spectrum compared to 4.8% of the general population ), however will, whenever they eat dairy or glutenous cereals, ( ie. at almost every meal time ) be exposing their their brains to opioids/opiate like molecules, which have serious effects on dopamine function:

Opioids/opiates cause the number of dopamine receptors to drop, increase dopamine-reuptake, ( so that dopamine disappears more quickly from the brain ), and may also reduce the amount of dopamine which is produced in the first place. Any sort of addiction, ( including smoking apparently ), which causes an increase in our brain of opiates/opioids ( either by ingesting the opioid in food or "drugs" or by stimulating the production of natural/endogenous opiates ), will have this effect.

Once the dopamine pathway is deregulated it is apparently also likely, ironically/sadly, to lead to new/greater/further/other addiction(s) because more opiates/opioids will be the only way to escape/avoid thinking about the mess that one is making of long-term stuff.

Basically opioids/opiates are the enemy of long-term thinking, and a third of people on the spectrum are exposed to unusually large amounts compared to the general population ).

@ catbalou: I don't know much at all about gf-"bread-replicas", so I'm afraid I can't help on that, sorry. Some people on WP in the past have recommended a couple of brands that are supposed to be good. What about rice crackers? Or plain/unflavoured corn chips with a dip? ( avoid the flavoured kinds; they have gluten in ). Plain salted crisps?
.

yes unfortunately she hates rice crackers and a bit too fond of crisps; corn chips yes we do use them . Btw congratulations on the nanowrimo , my mother is doing it so I know how much work is involved! Well done!

Thank you very much! Hope your mother's novel goes well! After finishing ( NaNoWriMo) two days early I will be back at the word-grindstone today for the start of NaNoFiMo! :lol

I thought I'd just repost a link to the recent study about unusually permeable intestines in a subset of people on the spectrum:

http://www.ncbi.nlm.nih.gov/pubmed/20683204
.

I'm going to deviate from my normal gluten/dairy/sugar/dye/etc diets won't help 99.9% of the people stance for a moment and say one thing.

If you care to take anything out of your diet, you might consider greatly reducing soy, not because it will have any effect on AS, but because there seems to be studies which indicate, than in excessive amounts, it can cause hormonal imbalances and thyroid issues, as well as possibly some other problems down the road, and most people are probably consuming unusually high amounts of it. It's very difficult to find products without soy today. You will find it most peanut butter, in fact anything that uses added oil probably uses soy oil as an alternative to palm oil, non-dairy instant creamers, as fillers in various foods, and so on.

In a sense, it's being used as a staple, when humans did not evolve eating soy as a staple. Human anatomy evolved to tolerate grains in large amounts, not soy.

In fact, if you notice, our molars are ideal for crushing soft seeds and grains.

Before you put your child through something as stressful as a gluten casein free diet do some research, and beware of pseudoscience.

Heres a link to a review of the evidence by actual doctors and scientists.
http://pediatrics.aappublications.org/c ... ement_1/S1
Heres a link that explains the other link in layman terms again by a doctor.
http://theness.com/neurologicablog/?p=1424

So far there is no evidence of a link between autism and GI problems the "leaky gut syndrome" is a failed hypothesis.

However I can very well believe a bad diet can make your child very unhappy and with autistic children it takes a monumental effort sometimes to get them to eat anything except garbage. A healthy diet will make anyone feel better and improve behavior, however extreme diets can cost more in stress, money and time than its worth there is also no evidence to suggest they work.

Humans didn't evolve eating either soy or grain as staples. Both became staples only with agriculture, in the last 10,000 years or so, and human adaptations to them have been minimal.

Grains are quite hard, in contrast to soft seeds like nuts, and our molars are not well adapted to chewing them due to having points and moderately thin enamel. That's why we typically cook grains if we're going to eat them.

The Wakefield associated/originated "leaky-gut" hypothesis has indeed been debunked, a long time ago now, ( it is very old news in fact :lol ) , but his hypothesis was not only that people on the autism spectrum have more GI problems than the general population, ( which has yet to be established, though a very large study publ last year showed that a small majority/just over half of autists have a gene which is strongly correlated with poor/compromised intestinal repair function, the "MET" gene ), but that vaccinations caused these problems. His methodology was at best flawed, at worst deliberately biased.

NB. A very recent study has just shown however that between 40% and 60% of ( a sample of ) 2-5 year old autists have a mitochondrial dysfunction, ( in energy production and fatty acid conversion ), cause as yet unknown, but a court case in the USA two years ago ruled in favour of damages to a couple of families on the basis that vaccinations had been responsible for transforming a previously undetected mitochondrial "difference" or vulnerability into an "autism-like" condition.

However, to return to gfcf diets. :lol The medical review you linked to was published just three/four months before two new, large, sound, and groundbreaking studies came out:

This last April ( 2010 ) a large and well-constructed study was published showing that a subset, ( about a third/36.7% ) of people on the autism spectrum have unusually permeable intestines, compared to 4.8% of the general population, ( another group which has higher than average numbers of unusually permeable intestines are schizophrenics, and interestingly most of the standard neuroleptics/drugs in use for schizophrenia have what has been until recently considered to be the "side-effect" of reducing intestinal permeability ... :lol ), which would allow the passage of unusually large amounts of food opioid peptides to the brain where their impact on the dopamine system, among other things, would have major negative effects on executive functioning, ( as described in my previous posts ).

And there is evidence, ( from another large, very sound, 2 year, random etc study published just this year as well ), that removing all sources of food opioid peptides ( ie. gluten and casein ), from the diet of autistic children had significant positive effects on their executive skills and social interaction.

PS. There is no link between GI problems and having unusually permeable intestines, so an absence of GI problems will tell you nothing about whether gluten and casein may be a problem ( unless you are one of the 1% of the population with celiac disease that is, or one of the 7%-15% of the population with some degree of gluten-intolerance ).


Addiction to, ( as opposed to GI problems with ), those two food groups ( glutenous cereals esp. wheat and casein/dairy ), and also to sugar, ( which apparently helps to attenuate opiate/opioid withdrawal symptoms I read yesterday ), would probably be a pretty reliable indication of a problem though.

Please read my previous posts on here, and the link that I provided in my last post, for further info.
.

How about some links to those studies?

Even if the studies say what you think they do. it wouldn't be sufficient evidence to warrant making major dietary changes. One or two studies, even if done right, should not be the basis for making medical decisions. Science does not work that way.

I read the abstract for the 2010 April study, if it was the same study, its a small study not a large one. As for how well constructed it was, I don't know, as I do not have access to the full text. But even if i did i would not try to interpret its results for myself. Even in the best studies researchers tend to exaggerate their conclusions and over emphasize the importance of the results.

There is a reason why the general population should not try to interpret medical studies, people leap to conclusions based on preliminary and quite often dubious data.

With ref intestinal permeability:

There have been at least two studies showing this.

The first one was a small/"pilot" one in 1996, abstract at: http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract

And the latest one in April 2010, which replicated its findings with a much larger sample group, abstract ( I give link again for ease of reading ) at: http://www.ncbi.nlm.nih.gov/pubmed/20683204



And here is the link to a blog-piece by a psychiatrist on that most recent one ( for the essential professional eyeview of the science and its implications, which you refer to in your post ) : http://evolutionarypsychiatry.blogspot. ... ism-1.html I quote:



To move onto the issue of the effects of a gfcf/food opioid-free diet on behaviour, abilities, etc here is a link to the 2010 ScanBrit randomised etc study of a gfcf diet ( study lasted two years ): http://www.ncbi.nlm.nih.gov/pubmed/20406576 I quote:

Which is where the results of the study on intestinal permeability will be very useful, ( because they point to there being this subset/36.7% of autists with unusually permeable intestines ie. a one in three chance of a gfcf diet working ), but unfortunately those came out too late for this first gfcf trial.

Link to blog piece on this study ( for the professional eyeview on the science involved and the implications ): http://evolutionarypsychiatry.blogspot. ... ism-2.html



.

Again I am not saying it should not be looked into, neither of those studies however are all that good. Single blind studies allow a large bias, on top of that half the participants dropped out, somehow I doubt it was the half that was seeing a large benefit.

But lets grant that they were superb studies and provided overwhelming evidence, the psychologist you linked to provided an excellent quote.

" It shouldn't be attempted without some professional nutritional advice, especially in a picky kid. And it's clearly no holy grail."

Consult a doctor, do not put any child on an extreme diet without consulting a professional. The university of Google is not a substitute for medical training.

My husband has been on a similar bandwagon about soy for a while. Turns out both he and my son really should not eat it, and we noticed a huge improvement in our AS son when we eliminated it totally by accident. The questions about soy are my main caution on the GFCF question, because it is hard to go GFCF without increasing soy. If it turns out soy is the real culprit for that one individual, going GFCF just makes everything worse.

I wish there were more nutritionists well versed in all this pseudo-science, and better tests for it. Oh, and that insurance would actually cover it . I would really like to KNOW what the members of my family should eat. I have reason to believe we all have some sensitivities, but nailing them down has not been something I've proved to be very good at. I really look forward to the day when this crap moves out of pseudo-science into something with a reliable protocol. There are real issues here, just that no one seems to have the definitive answers on what they are and how they can be flagged.

I'm gfcf, and I don't eat any soya, and I really don't understand why going gfcf would increase the amount of soya that someone ate.

Best foods, for almost everyone, are fresh fish, fresh meat, fresh lettuce, carrots, parsley, avocado, fresh fish, fresh meat, fresh or "well-tinned" or "well-frozen" oily fish, eggs, root vegetables for most people, some fresh fruit, ( clementines, bananas, some berries ), some rice if absolutely necessary, eggs, fresh fish and shellfish, ( esp mussels ), and fresh meat! :lol

PS. some people are sensitive to eggs, citrus fruits, all grains including rice, or even anything starchy at all, ( like bananas and rice and potatoes ), or the tomato and potato family, or the entire cabbage family, or oily fish and smoked and cured hams/meats.

The safest foods, ( so long as are not ill/contaminated ), are fresh meat and fresh fish and the lettuce family.
.

Last edited by ouinon on 04 Dec 2010, 3:56 pm, edited 1 time in total.