All the 'special diets'

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Dr Karl Reichelt has a theory, ( shared by the team responsible for the Sunderland Protocol ), that food opioid peptides in gluten and casein may be responsible for some kinds/cases of autism. And recent findings about intestinal reactions to the opioid peptides in gluten and casein in a subset of people on the spectrum provide support for this: A study has found that the intestinal cells in a subset of people on the spectrum relax the junctions between them quicker and for longer in the presence of gluten and casein than is "normal", thus allowing the passage into the blood and to the brain of more of the opioid peptides in this subset of people than in other people.

Reichelt's theory is that the presence of unusually large numbers/amounts of food opioid peptides in the developing/infant brain causes changes in how the neural network is constructed, and that this kind of change might be relatively soft-wired during infancy, such that a gfcf diet begun early enough may halt or even reverse some at least of the neural connections and growth associated with autism. ie. he appears to be saying that some autism could/can be "cured".

This is very different from saying that many of the difficulties experienced by some people on the spectrum may be the result of the autoimmune system response to gluten and/or casein and the two or three kinds of damage that can result from that; ie. 1 ) vitamin and mineral and fatty acid deficiencies caused by severely reduced absorptive capacity, and/or 2 ) the "sickness behaviour" response to immune-system activity/inflammatory cytokines, and/or 3 ) the attacks by the immune system on any and all cells to which the offending peptides, ( whether from gluten or casein or other food ), have penetrated, including the glial cells in the brain.

I think that there is no doubt at all that the immune-system response alone, in celiac or non-celiac gluten intolerance, ( 1% of the population are celiac, and 10-15% of the population have elevated levels of the gliadin-antibodies involved, a significant percentage of the population ), may be responsible for effects on both physical and mental health which would seriously aggravate the state of anyone with sensory processing issues or cognitive dysfunction, ( they have found that inflammatory cytokine activity can cause impairment of memory and cognitive function ), and impact on social responses, ( "sickness behaviour" is characterised by social withdrawal and loss of eye contact, for example ).

A recent very large Danish study found that women with diagnosed and treated ( so no longer in the group of mothers who tend to give birth to low-weight etc babies ) celiac disease are three times more likely to have children who are on the spectrum, which suggests that there is some sort of connection between autoimmune system disorders and autism, though exactly what remains to be seen.

Until now the theory that food opioid peptides could be responsible for ( some cases/kinds ) of autism had little scientific support, but this study shows that a subset of people on the spectrum do in fact have what has been referred to as "leaky gut" syndrome, because of an apparently inherent ( but it may not be, it may be induced by some environmental factor as yet unknown ) cellular response to the food opioid peptides in gluten and casein, which precisely enables/allows these powerful chemicals to reach the brain in greater amounts than is "normal". I think that it is very interesting. ... The jury is still out on whether all autism is caused by the same things ...
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Last edited by ouinon on 28 Sep 2010, 3:07 am, edited 3 times in total.

I think it all depends on the child. My son has always had GI problems. He had surgery at 2 months for pyloric stenosis and had reflux until he was walking good. While he potty trained relatively easy, he has horrible bowel movements and has always been constipated. We have always given him various meds when it got bad and even as a 9 year old, still sits on the toliet like a frog so he can pass poop the size of a softball at times.

I have recently made an appintment with a ped gastro doctor and am waiting to get in next month. I also came across an article about digestive enzymes 2 weeks ago. I actually had favorited some sites about it a year ago and then they were forgotten. I ended up purchasing the book Enzymes for Autism. Is it a cure for autism? No, the author doesn't claim that at all. Does it even help all kids with autism? No, but I do think digestion may be a cause for some of the irritibility and sensitivites seen in some kids. I recently started my son on enzymes to see if they would help him. We are still building up and I haven't thought I saw any major change in about a week and a half. However last Friday, we took our son out of school for a doctor's appointment. He was a complete delight for the 3 hours we had him and all during his appointment. Truly at his most charming. He missed lunch, so we took him out to eat and didn't have any enzymes with him, so he ate without them. He only had one hour left of school when we returned him and he was in a great mood. Nothing bad happened at school, but boy was he a handful that evening. Nothing was right for him. He was mister know it all. He was irritated about everything. I can't say that there is a connection or not yet, but I have been keeping a journal and trying to see if I see him doing any better. I can say that he has haad normal bowels ever since we started on them and he thinks they are wonderful and doesn't want to quit them for that reason alone.

We are just starting this, so I don't know much yet. We are in the trial phase, but I did want to share this as I think it can help some people.

I tried the diet and supplements and it just didn't work. I think it helped but it was just to hard to keep up with. He hated all the food and is skinny anyway. We limit the sugar and try to get him to eat veggies and meats. Carbs turn to sugar so we try to limit them too.

Recall reading a How To (understand) Hyperactivity book (1981) about ADHD Inattentive by C. Thomas Wild which addressed the idea of nutrition and the need for full disclosure ingredient labeling for all drugs and foods. Wild promoted the idea of fresh, whole foods for good nutrition but he made no promises as to outcomes. What Wild wrote about some hidden food additives as well as the very old item, coffee - caffeine, is scientifically accurate (not a fib), that is, for a few, a few food additives can act as powerful, undisclosed drugs and that coffee - caffeine compounds - can temporarily improve alertness for some users (not all users). The How To book is educational but the book will not cure anything (other than ignorance on the topic) because neurological challenges such as ADHD, Asperger, and Autism are not allergies at all but rather lifelong neurological challenges.

http://www.nutrition.gov/
http://www.rsna.org/rsna/media/pr2005/Coffee.cfm
http://www.coffeescience.org/alert

I'm sure some people are allergic to gluten but I honestly don't think it's as prevalent as you might be lead to believe.

Honestly if you want to see me in a really bad mood, take away my gluten products.

The simple thing to do would be to have your kid allergy tested, and tested for celiac disease as well.

Peer-reviewed, perfectly sound scientific studies in the last couple of years, ( both short term ones and long-term ones which finished in 2009 and 2010 ), show that about 1% of the population now have celiac disease ( whether the classic gastrointestinal version or the skin disease associated with the autoimmune system reaction, or gluten neuropathy ), and that in addition 10%-15% of the population have elevated levels of gliadin-antibodies, which can cause damage to a wide range of organs, from the gut, to the pancreas, thyroid, and the brain.

And, as the study I referred to earlier in this thread shows, at: http://www.ncbi.nlm.nih.gov/pubmed/20683204 ... 36.7% of diagnosed autists ( as compared to 4.8% of the general population ) have hyper-permeable ( "leaky" ) guts, ie. intestines which are more permeable than normal in the presence of gluten and casein.


A very reliable indicator of a food intolerance is addiction to the very food to which you are sensitive, and people with gluten-intolerance for instance will need regular doses of gluten in exactly the same way as an alcoholic needs their drink.

Withdrawal symptoms vary in severity, ( from melancholy/mild depression, brain-fog, and irritability, to hysterical outbursts, aggressivity, deep depression, etc, if your intolerance has a neurological component, or paradoxically more painful guts, strong cravings, nausea, aching joints, poor sleep, etc ) aswell as in duration, but it usually takes at least 4/5 days, depending on intestinal transit time, to get over the most acute ones.

It can take up to 26 weeks for gluten to leave the body completely, and people usually experience even more improvements at this point, but if you manage to exclude it completely from the beginning you may see improvements not only in gastrointestinal function, sleep, energy levels, skin problems, etc, but in a significant number of cases in mood and cognitive function.


Be sure to research which tests are the most reliable before paying/asking for these, because at least two of the most common give a lot of false negatives. Check with this site for more info on this:

http://sites.google.com/site/jccglutenfree/
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I also get in a bad mood when people take my water away. I will review the studies you claim exist when my VPN connection goes back up. You will have to provide a source for the latter claim that "a reliable indicator of food intolerance is addiction"

Do you mean that you would simply, and quite naturally, be annoyed if people took your food and drink away from you? ie. there is not in fact anything special about how you would feel if people took "your" "gluten products" away.

Are you talking about appetite and hunger generally, ie. getting irritated if you don't get enough food ( and water ) to keep your energy levels up, etc, or did you in fact mean that it is gluten products in particular that you would "miss"?

Would you feel equally irritated etc if you couldn't eat potatoes or rice for a whole day? Or if you had to go without eggs for a couple of days? I'm not sure I understand the point that you were making when you said "If you want to see me in a really bad mood, take away my gluten products".

Will see what I can find about the "science" of food intolerance and addiction.
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strangely i can connect with this. pre-diet, i used to need a glass of water by me most of the time, since I liked to take sips about every 15 minutes. When I'd get up I'd sometimes forget to take the glass with me and I'd forget about it, leading to 3-4 glasses of water in various places around the house, which made my family think I had a problem like that little girl from 'Signs' who leaves glasses of water around the house all the time.

I even got myself checked for diabetes because I seemed to have a constant thirst, but I didn't have diabetes. At times I'd drink a whole bottle of water (500ml) in one go and then still want more. I was surprised when I heard adults should aim to drink 2-3 litres a day as I seemed to already be drinking more than this.

Because of this I had to go the toilet a lot, usually every half an hour to an hour. This was ok when I was at home, but otherwise I'd always be looking out for toilets when I was out. Other people never seem to have such a problem. Trips to the cinema were spent with me worrying whether or not I'd have to get up during the film to go to the toilet.

I also read about urinary infections and other things but never really followed up on that.

Since doing the diet, one of the things I've noticed is that I no longer need to always have a glass next to me. I can go hours without needing to take a sip of water. I'm a more normal now and don't drink excessive water or need to go to the toilet as frequently.

One theory I have is that a gut infection / dysbiosis of some kind might demand water? Otherwise I don't really know.

It'd be interesting to hear if any other aspies have had the same problems as I have.

Thank you very much for asking for more information on the subject.

It is a phenomenon which has been documented by many different doctors and health professionals over the last 75 years, ( or more ), based on thousands of cases, but has rarely, if ever, been the subject of a controlled scientific study.

So, looking for more than "mere" caseload and anecdote by doctors/general medical practitioners based on decades of work with thousands of patients, I came across this article, which I think is very interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314940/

"The Abdiction/Addiction Connection" by Ernie Hood, publ. Environmental Health Perspectives 2005















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Good on you Brooke for asking the question about the diet it sounds like you are a pro-active and open minded mum which is great. I agree with others on here that because she does not have restricted diet or any other signs like constipation, eczema etc it may not help. However I still think trying an easy to digest milk for a week (in Australia either Zymil or A2 which is cows milk with a different milk protein and is actually better for you anyway) and cutting out other dairy for a short trial period would not hurt. This way you do not need to worry about allergies to soy. If that works you could try cutting out gluten for 3 months with the help of a dietician.

About 6 weeks ago I posted about the amazing improvements in my son after a week on this diet I got some very negative feedback so this is my first post since but I have come to the conclusion that I have 2 choices:

I keep what I have seen to myself in order to avoid giving false and not being insensitive to those who diet will not work for
OR
I tell my story to as many people as possible in the hope that I might just stop one child or adult for that matter living as a fully autistic individual when like my son they are in fact only very mildly autistic.

In OUR case I don't believe I have recovered my son from autism rather I believe I have returned him to his natural state. My reasoning on this is that my son was always stiff as a breastfed only baby and used to shake and stretch out stiff when excited so I believe he was born with issues but at 1 1/2 yrs about 2 months after I stopped breast feeding he began to throw irrational out of control tantrums, became highly sensitive to noise, started rituals, and from then on his motor skills advanced very slowly although he had reached all his motor skill milestones i.e crawling, walking at a normal age.

More traits emerged as he got older approx. 2 months ago before I started the diet he would not make eye contact with anyone outside the family circle, would not play with others, was not using his own words rather parroting what others said, only using 3 or 4 words at a time, very rarely could answer questions or follow instructions, could not get his attention, repetative behaviours, obsession with mechanical things with very little interest in animals, still walked like a baby and held his right hand up in a fisted or pincer position flopping at the wrist.

Now my son walks with his arms down, uses his own words i.e the other day he said "You told me not to put it on the couch" sentences like this are now quite common, plays with other children the list goes on. We still have some issues: he gets anxious when there are large groups of people and still throws irrational tantrums. Btw "The Sunderland Protocol" was spot on with everything I have witnessed with my son

Looking back I think there were signs that the diet would help MY son:

Constipation and eczema that was not present when breastfed only
Appearance of more autistic traits when breast feeding was stopped
Grainy poo like he had eaten handfuls of sand or hard dark poo like a rabbits
Clear grains in his wet nappies (I have since learnt these were most likely peptides)
Asthma like coughing that was present even when he didn't have a cold
Restricted diet - Excessive milk intake and foods high in gluten (weetbix, bread, biscuits)
Spaced out i.e would not answer or turn when called
Had days where he seemed completely 'normal'

With us I think it is a combination of genes I myself crave milk, my husband has eczema, my youngest son also has eczema and it flares up when he has cows milk plus we have autism on my mums side of the family.

To those of you who are very negative about this diet I ask you to consider that by talking parents out of trying it you may actually be affecting their child's future. It may only be the minority that it will work for but even if it is only 10% that is A LOT of people across the world!

btw ouinon your awesome It's great to have someone post about this that has done some reading on the topic

about testing for intolerances. A good friend of mine did a saliva test? I didn't see anything mentioned (just did a quick skim) on the linked page above. it would be realllly nice if any intolerance could be tested BEFORE doing the GF diet. First, GF diet is expensive, two, not sure my son who basically only eats gluten foods would 'deal' with not having bread/wheat products.

And more about testing - can any of this be covered by insurance if you get testing? The prices are ridiculous crazy for out of pocket and i know my husband would NOT go for that, with such sketchy connections and with Henry not showing any classic signs of being gluten or cassein intolerant.

I also wonder with these 'improvements' is how many of the (with developing kids, especially) are just from maturity, OT and Speech therapies? How can you tell WHY things are improving, when it's being addressed beyond the diet level? Or, is it that it helps with things OTHER than what is addressed with therapies? Like it helps with stimming or more social behaviors?

The biggest problem that I have with these types of discussions has to do with intolerance, not the food related kind either.

We don't give our son Cow's milk, and he self limits his dairy intake. Why? Because he is lactose intolerant. It's that simple. If he has cow's milk it gives him terrible cramps and gas. To me if something makes your child feel badly after they eat it, it's common sense to discontinue feeding it to them. I didn't stop offering dairy products because my son has Autism.

I have never tried gluten free and I have no intention to do so. My son has never demonstrated that he has any gluten issues. In fact, he has tremendous difficulty digesting brown rice which is supposed to be so easy for children to tolerate. Most people think I am crazy when I mention this. They might not feel that way if they were up with a screaming child all night long and that screaming miraculously ceased when we ran out of rice cereal and I forgot to buy more. So I don't give him brown rice. There IS a possibility that he may develop gluten intolerance because one person on my husband's side has in very old age. I would be surprised if it happened though - my family is mostly of Italian descent so gluten is a gigantic part of our lives.

There is no doubt in my mind that gluten intolerance exists and it certainly is beneficial to remove it from your diet if you suspect you have celiac disease. I don't believe that a simple change in diet can "cure" autism. If it does "cure" your child, then I don't think Autism was really their problem. Can it dramatically help improve their symptoms if they have trouble with gluten and/or casein? Absolutely.

Now, is it possible that I am wrong? Why yes, it is. I do not know everything. I am however suspect of ANYTHING that people claim will cure Autism. I don't see it as curable. I think many parents get so caught up in trying to cure their kids that they stop trying to work with their kids. It's a phenomenon that I don't understand. I also think it's very damaging to send your child the message that "I don't like you the way you are, and I want you to change into someone else". Because that is to some degree what you're doing.

It's so difficult I think for us as a group to accomplish much of anything because everyone seems to have different goals. There's a group of us who are just trying to help our kids cope, and a group who is trying to cure our kids. A lot of the time our paths cross. Sometimes that is a very bad thing. I have been ostracized because I don't think changing my kid's diet or having him chelated or de-yeasted is going to improve his life. I don't think that vaccines made Autistic. I know what made him "this way". I did. I also think there are very strong makers on both mine and my husband's side of the family for Autism - I see a lot of common traits. We are all functional however so I guess it's not as big a deal. Because I am unwilling to jump on the "let's be angry at someone because my child isn't like everyone else's" bandwagon. I don't get invited to a lot of things. That's the hardest part of my son's AS for me. We're not accepted anywhere here - most people whose kids are AS either are out and pissed off or quarantining their kids. People with kids who aren't AS don't understand my son and aren't interested in learning anything about him or trying to accept him with all his "warts". I think that's a shame.

I wish we could all stop being angry and try to be more productive. Work on behavior therapies and coping skills. Examine supplements and diet changes that help - sure.

But seriously, I get tired of people trying to cure my son and I away. Yeah, we're weird. So what? I work and pay taxes. I got married and I do have friends - not by the dozens - people I know I can count on. I am healthier than most people I know especially since I quit smoking for the last four years. My life isn't perfect and I have a lot of trouble in a lot of different situations, but everyone has challenges. I don't want to be cured. More often than not, I wish people were similar to me.

Well, there's my tirade for today. Woo. Hoo.

I think you are looking at it in a different way than is intended. There are studies that suggest that gluten/cassein can make kids worsen their behaviors because they affect the brain. They may not have any other visible sign of having gluten problems - at all. There is even some studies that say that wheat perhaps in infancy (or earlier?) the neuropathways get messed up/disrupted DUE to gluten or cassein and correcting that earlier than later can stop that process maybe early enough to allow the brain to repair itself somewhat.

It's like taking a brain drug away from the child and without it, their brain works more normally, the way it should.

How is this being intolerant? I guess, for me, while I don't expect any miracles, and I really think there's like less than 5% chance he has an issue with gluten, but WHAT IF? What if taking him off wheat and other things with gluten helps his brain? What does it hurt to try? If it works, I'll be so happy. If it works, I ask myself, why didn't I or anyone else suspect this earlier? if it doesn't work (as I suspect it won't) I can say, "well at least I ruled that out and I won't have that tiny bit of doubt int he back of my head."