Gluten-free, casein-free diet

[pne]

Hm. I was following random interesting links in Wikipedia and came across a couple of links that make me wonder whether a change in my diet would be helpful.

It started with this bit in the article on "gluten":

People with autism and autistic spectrum disorders, like Asperger's syndrome, may be sensitive to gluten and casein (a protein in milk); both seem to have an opiate-like effect on these people. The opioid effect of gluten is caused by gluten exorphines and gliadorphin. These are peptides formed in the digestion of gluten. See more at gluten-free, casein-free diet.

That made me think because I sometimes wonder whether I have Asperger's syndrome or something similar.

The Interwiki link to the German Wikipedia article on "gluten" also had some interesting text:

Weiterhin scheint es, dass manche Menschen Gluten (ebenso wie auch Kasein, d.h. Milcheiweiß) nicht vollständig verdauen können, und dass die in diesem Fall zurückbleibenden unverdauten Peptide auf das Gehirn und Nervensystem dieser Menschen eine Opioid-artige Wirkung entfalten. Die Folgen sind offenbar Antriebslosigkeit, Müdigkeit, Depression, krankhafte Abneigung gegen soziale Kontakte, verminderte Schmerzempfindung, allgemein verarmtes Gefühlsleben, chronische Verstopfung, etc. (eben die typischen Opioid-Wirkungen), wobei die Schwere der Wirkungen variiert. Auch für Autismus ist dieser Effekt als eine von mehreren möglichen Ursachen im Verdacht. Diese ganze Theorie wird jedoch zwar durch einige Experimente nahegelegt, aber noch keineswegs bewiesen. (siehe z.B. diesen Artikel aus "Die Welt").

Bei vollständigem Verzicht auf glutenhaltige Lebensmittel (glutenfreie Diät) bilden sich offenbar in beiden Fällen die Wirkungen nach einiger Zeit wieder zurück.

Rough translation,

In addition, it seems that some people cannot completely digest gluten (as well as casein, i.e. milk protein), and that the undigested peptides which remain in such cases have an opioid-like effect on the brain and nervous system of such people. The results are apparently motivation deficit, tiredness, depression, abnormal dislike of social contacts, reduced sensitivity to pain, generally impoverished breadth of feelings and emotions, chronic constipation, etc. (that is, the typical effects of opioids), though the severity of effects varies. This effect is also one of several suspected as possible causes for autism. This entire theory is suggested by several experiments, but has not been proven in any way. (See also this article from the newspaper "Die Welt".)

After giving up gluten-containing foods completely (gluten-free diet), apparently the effects decline after a while, in both cases.

And that description sounded uncannily like some of the problems I have… at least the "motivation deficit, tiredness, depression, generally impoverished breadth of feeligns and emotions" bits. Maybe something to talk about with a medical professional.

On the other hand, giving up dairy products isn't very appealing, since that includes much chocolate. And generally, having a dairy-free, gluten-free diet sounds like a royal pain in the behind since so many products contain those things. Meh. (I'm reminded of recent entries by simont.)

Other related entries in Wikipedia are gluten-free, casein-free diet (which focusses more on the effect on children) and biomedical intervention for autism.

Hmm. Meh. Bleh.

Comments

[leora.livejournal.com]

Not sure, as I hate chocolate, but you might be able to buy cocoa and mix it into things other than milk. There may be some ways to get chcolateness that don't involve milk.

I wonder if a diet like that would do me any good, but given that I'm vegetarian and I don't like rice, mushrooms, or eggplant it simply seems too impractical. I would be left with almost nothing to eat.

[timwi.livejournal.com]

Wow. You've digged something up there! If this applies to me, this would explain a lot of things, because I drink hot chocolate at work all day. Maybe I should try to refrain from that for a week and see how it goes.

[pne.livejournal.com]

On the other hand, Some people experience immediate improvement although it may take as long as six months for gluten to clear out of the system and one month for casein to clear. Advocates of the diet recommend trying it for at least a year as it can take this long for some children to show improvement. The diet affects changes in the body at a cellular level and promotes healing of the stomach and intestinal lining, both of which can take time. So don't get your hopes up too much or be discouraged if a week doesn't appear to show any difference.

(From the Wikipedia article on "gluten-free, casein-free diet" (http://en.wikipedia.org/wiki/Gluten-free%2C_casein-free_diet).)

[pne.livejournal.com]

If this applies to me, this would explain a lot of things

That's the feeling I got when reading a couple of those articles.

[mendel.livejournal.com]

As much as I love Wikipedia (and I do!), I think it would be a good idea to confirm those findings in a medical journal before using them to self-medicate. Going gluten-free is an awful lot of expense and inconvenience if it's only a placebo!

[pne.livejournal.com]

I think it would be a good idea to confirm those findings in a medical journal

I'm not sure how to go about doing that.

But I have an appointment with a doctor in five weeks' time anyway to discuss Matters so I thought I'd bring it up then and see what he says.

before using them to self-medicate. Going gluten-free is an awful lot of expense and inconvenience if it's only a placebo!

Most likely.

Thanks for reminding me.

[mendel.livejournal.com]

Doctor's probably a good bet, but don't expect him to be aware of the research either, although by your next visit he ought to have had time to read up.

By yourself, all you really want to do is find the original source that's being reported on in the Wikipedia article. Ideally, the author of that fragment of the article could point you to their source, but I'm aware how often that works :-) If you want to go it alone, the best place to start would be PubMed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?).

Searching there for "gluten autism" gives a bunch of results, but one on the first page of results is eyecatching:

Millward C, Ferriter M, Calver S, Connell-Jones G. Gluten- and casein-free diets for autistic spectrum disorder.Cochrane Database Syst Rev. 2004;(2):CD003498. Review.

Well, a review of literature is certainly a good bet. PubMed doesn't provide article text; you'd have to find the original journal to see the full review, but the abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15106205) summarizes the results and conclusions of the review.

There's probably a few more relevant articles (including the articles reviewed in that article) present in that search. You'll still need access to a medical library, or friends that have access, to get the full articles, but the abstracts might be a good starting point anyhow. If you're stuck, I've still got access to a handful of online journals.

[papertygre.livejournal.com]

Hello, I found your journal by searching google for "Asperger's opioid".

For some journal-research-based information, you may find this resource helpful: http://www.enabling.org/ia/celiac/aut/reich94.html (Do an in-text search for occurrences of "opioid")

I've been interested in gluten-free casein-free diet off and on for years, but since I've gone back to school lately and have been having concentration problems that I have managed to connect somewhat to diet, it's sort of been coming to a head for me. So I've been struggling with issues like how to be certain it's an appropriate thing to seriously undertake, whether it would be worth it even if so, etc. If you are interested, I posted some thoughts about it recently here (http://www.livejournal.com/users/papertygre/247290.html).

Cheers,
Ratha

[pne.livejournal.com]

Thanks for the comment. No time just now to look at and digest the article or your entry, but I'll keep your comment notification around to remind me.

[elgrande.livejournal.com]

"Going gluten-free is an awful lot of expense and inconvenience if it's only a placebo!"

Does it matter if it's a placebo or not? It's the result that matters, isn't it?

[mendel.livejournal.com]

Yes, all of the results, including tripling or quadrupling your food budget, having to relearn how to prepare meals, never being able to eat out, the rest of your family having to go gluten-free at home, and so on. Determining which foods in the supermarket are gluten-free is difficult thanks to the absence of labeling requirements in most countries, and gluten is everywhere. Going gluten-free is a huge lifestyle change and a pretty miserable food existence, and is a pretty drastic step to take given that there's a far smaller chance that a placebo will act on a condition than if it were a biological mechanism at work as it is in the case of celiac.

(There's a big difference between "the studies quoted turned out to be a placebo effect" and "this is an effective placebo for pne"!)

[elgrande.livejournal.com]

"Yes, all of the results, including tripling or quadrupling your food budget, having to relearn how to prepare meals, never being able to eat out, the rest of your family having to go gluten-free at home, and so on. Determining which foods in the supermarket are gluten-free is difficult thanks to the absence of labeling requirements in most countries, and gluten is everywhere."

I was not suggesting that anyone should start changing their diet. I have no idea what symptoms people have, how bad the symptoms are, how difficult it would be to change one's diet, and most importantly, I don't know the first thing about medicine.

All I wanted to know was why you think it matters if there is a "real" effect or a placebo effect. Your last two sentences explain that.

[meeps-hitchie.livejournal.com]

Considering how unhealthy a life some of our high performers live, my guess on the matter is that the effects of gluten are being overrated. In addition I strongly suspect research of overdramatizing their reports in order to be granted a budget.
As far as my experiences go - and I'm a chronic little self-observer - satisfaction is a better motivator than following some dietary regime. Unless of course changing one's diet makes a person feel like she's achieving something.
What I'm saying essentially is that the mind has a more significant influence on the matter. Well, that's how it works for me.
(Now I got the feeling I said something terribly corny, but I just can't put my finger on it. - Wait! - Uhm, correction: I refuse to.)

[timwi.livejournal.com]

I strongly suspect research of overdramatizing their reports in order to be granted a budget.

That is being a bit unfair on the researchers, and on the scientific method as a whole. Scientific papers are very thorough, and research grants are not normally awarded only for the impressiveness of a Conclusions section. Besides, the grants are usually awarded before the research actually takes place. ;-) I can't say I'm an expert in this, as I have not done research myself, but this is from what I've heard.

[elgrande.livejournal.com]

Interesting. Have to read more tomorrow. Some problems also sound like me but then again I don't drink milk or hot chocolate and I don't eat cheese either, except on pizza, simply because I don't like it. So if it's mainly about dairy products, I can't change very much.

[marikochan.livejournal.com]

If you haven't seen it already:

Google art

[pne.livejournal.com]

Do you know what date that was used for and what search term it linked to?

Re: Google art

[marikochan.livejournal.com]

It was yesterday (April 10 for me), and I believe it was to start National Library Week (I thought the search term was "National Library Appreciation Day" but I can't find anything on that now).

[robnorth.livejournal.com]

From what we've learned and read and seen (having a child with high-functioning autism/Asperger's syndrome):

If you have a severely autistic kid, a casein-free/gluten-free diet might make a huge difference. Or none at all. But you won't know until you try.

If your kid isn't as severe (as in our case), the hassle of a cf/gf diet is probably not worth the behavioural benefits.

You sort of have to do a cost-benefit analysis. Doing cf/gf is a royal pain in the behind. No birthday cakes at friends' birthdays. No pizza parties. No Mickey D's. No to just about any fast food anywhere. No to most restaurants. Way more expensive ingredients for food. Almost have to convert the whole family, lest the autistic kid feel "left out" when everyone else is having "normal food". It's a lot of work.

If the kid's severe enough that the benefits could outweigh that hassle, go for it. In our kid's case, we weren't going to bother.

Interesting research going on now, though, trying to figure out what the connection is.

Response

[(Anonymous)]

We do a gluten free and casein free diet for our son. I just thought it would be kind of interesting to try and it is actually not that much extra work or expense. We are trying anything that might work, as long as it does not have any long-term effects or anything (no drugs, I do not like them). If you consider the fact that you are cutting out all the expenses of going out to eat and everything, you could actually save money (definitely not time though). One example of not having too much extra work is that when I make pizza, I will make one with a gluten free crust and the other with normal crust and both have a cheese substitute. There is not too much extra work in that, maybe an extra 15 minutes and that is it. Pie crusts can be made with ground cashews or almonds and soy or rice flour and I prefer them to normal pie crusts as they are richer. Also, in response to the post way above, carob is an excellent chocolate substitute as well and there are vegan carob chips in the health food section of the grocery store. Basically, once you learn the diet, there are tons of food possibilities open. My opinion only, just wanted to point out that it is not that difficult.

[schnurble.livejournal.com]

Hubby's cousin has celiac and has to live on a strictly gluten-free diet and I can tell you, it's a real pain in the arse for him. I wouldn't do it if it wouldn't be absolutely necessary. But it's certainly a good idea to talk to a medical professional about it.