A Gluten and Casein-free Diet to "Stop" Autism - Should I continue?

[Triscuitable]

My mom's got this theory from these articles she's read online: a gluten and casein-free diet will somehow reduce the effects of autism. I'm autistic (Asperger's, though come DSM-V I'll have "mild autism"), and recent happenings in school have led me to decide to try this on some slim hope that this diet will help me in school and home.

Somehow, wheat and dairy proteins = anti-social behavior. That makes sense (no it doesn't).

My reaction after a week has been stressful; I woke up this morning to a batch of waffles, only for my mom to remind me, "no, you can't eat it; there's some gluten-free waffles in the freezer."

I. Hate. Frozen. Waffles.

So I toast up the chunky abominations in the toaster. They come out fractured and looking like someone threw a rock through a glass window, only this time the rock is a toaster iron and the glass is a gluten-free waffle. They're alright, but I feel like I'm missing out on a really good meal.

Oh right, and today's Thanksgiving. What can I eat, mom? How about those mashed potatoes! No. Stuffing? No. Gravy! No. Turkey? Yes. Cranberry sauce? Yes (I hate cranberry sauce). Green beans? Yes (that's good, I guess).

A plate of turkey, gluten-free mashed potatoes, gluten-free gravy, and green beans it is, then.

I love to bake. It's right up there with playing the bass and gaming. Taking away two crucial ingredients to bake my favorite things (butter and flour) is just cruel. I'm starting to doubt that this diet is even working; frankly, even if it is working, I still hate it.

Time for a gluten-free pumpkin pie. By the way, it was $20. That's outrageous. Not only is this diet full of shoddy food that tastes terrible, but it's also expensive as hell. I can't take it at this point; I hate it so much I don't even know whether to bother to continue or not.

[tyckspoon]

Can't comment on the actual purpose of this diet- that's barreling headlong into Medical Advice, which means the only relevant comment we can make is "if you aren't happy with it, don't take your mom's word for it, go ask your/a actual Doctor for a professional opinion."

As far as the food goes.. if you want enjoyable restricted diet stuff, you pretty much have to take responsibility for making it yourself (this is changing with growing awareness of the market for gluten-free products, but it's still not an easy change.) Acquire a supply of gluten-free flour, find a good replacement for anything you might use casein-containing products in, and continue cooking the way you used to.

[Castaras]

Diet ain't going to work. Deals with different stuff to what aspergers causes.

If you don't enjoy the diet, and aren't sure if its working, stop it. Go to a psychiatrist / one of the learning support people if need be and ask them if you're wanting to know if it works. My personal opinion as a fellow Aspie is it sounds like a load of bollocks.

[Serpentine]

Sounds dodgy. Although... not as dodgy as I thought, but it doesn't seem properly clear whether the effects are real, significant and not just a placebo effect on the reporting parents. Your mother really needs to get proper medical advice on this, though, either way.

[Rawhide]

If you don't enjoy the diet, and aren't sure if its working, stop it. Go to a psychiatrist / one of the learning support people if need be and ask them if you're wanting to know if it works. My personal opinion as a fellow Aspie is it sounds like a load of bollocks.

There is an absolute carpload* of incorrect ideas floating around about what causes and how to manage Aspergers/autism. It's vaccines, it's antibiotics, it's bacteria in the gut, etc, etc. Balderdash^#, the lot of it. It is possible that something some people are perpetuating might help some people and it just hasn't been researched fully, but until it has, there is absolutely no point trying it unless you are in a trial or your doctor has recommended it. Some can do more harm than good.

So, in short: DO NOT LISTEN TO WHAT YOU READ ONLINE. Get a professional medical opinion.

P.S. Oh, and my experience with it is a) having teachers for parents who dealt with it in the children they taught, and b) working with people on the spectrum, as well as all associated research.


*Carp that has also been out in the sun all day, and you know how bad rotten fish smells.
^#That's about as strong a word as I can get away with.

[Hiro Protagonest]

Cutting back on wheat and dairy might help a bit, if your mother actually wants to make the commitment to find food that's good, but if you honest-to-god wanted total elimination of gluten and dairy... move somewhere else. America is the antithesis of that lifestyle.

I doubt it would work anyway, at least in any sense of it "curing" or "stopping" Autism, rather than just making you a bit less stressed.

[Triscuitable]

I don't want a "cure", and I certainly don't care what happens. I'm completely apathetic to this. However, my mom's been wanting me to take this as an option for a while now; after a week, I'm only feeling weaker and sicker.

[Serpentine]

I urge you to convince your mum to talk to a doctor about this, including your increasing ill health.

[Triscuitable]

She won't have any of it. She thinks I wanted to try the diet because I wanted her to calm down. I was having a ****ty week. That's why I wanted to try the diet. Now the diet is making my weeks ****ty.

Oh, and she's whining that she spent a lot of money on it. You should have anticipated that I might want to stop if it didn't help. Those were my exact words when I wanted to try it: "If it works, we'll keep doing it. If it doesn't, we'll stop."

Guess what? It didn't work. Stop the engines.

[enderlord99]

Triscuitable's mom is apparently a Balderdash.

I don't care if that's grammatically incorrect, it's the closest thing to the truth I can get away with.

[Zrak]

I love baking, too, and I was worried that when I went vegan, without eggs and butter and so on, that I'd lose the ability to bake, or at least lose access to a lot of my favorite recipes. Instead, I just got to learn a lot of new stuff and got the excitement of finding out different ways of making things that had once been autopilot. Even though I'm not a vegan any longer, I still bake stuff a vegan way, sometimes, if I'm out of an ingredient or just wanna try something different.

I don't have as much experience with gluten-free baking, but it certainly can be done. While this sounds like something to mostly wait out, if it's not really helping and you don't like a lot of the stuff, you could still try and make the most of it while you kinda have to stick it out.

[Triscuitable]

Triscuitable's mom is apparently a Balderdash.

I don't care if that's grammatically incorrect, it's the closest thing to the truth I can get away with.

No, she's a good person; she just blames one of two things for my bad behavior: autism or video games. Gee, you never thought to check if maybe it was the bullies at my school who give me crap with no reason at all? Or maybe it's the mountains of homework that I get from teachers that have a vendetta against me for not acting within the social norm?

I love her, but I'll be damned if half the stuff I'm punished for isn't just one of her insane theories as to why I did so.

I also spoke with her, and she was super-defensive about the topic; she said, "you can at least try it", and then said, "do what you want." Well now she's going to guilt-trip me? I'm trying to get her to take me to a psychiatrist at the very least, because I'm sick of eating bread that tastes like slate and is staler than sand.

Maybe someone who tried this will know better than some random articles on the internet.

I love baking, too, and I was worried that when I went vegan, without eggs and butter and so on, that I'd lose the ability to bake, or at least lose access to a lot of my favorite recipes. Instead, I just got to learn a lot of new stuff and got the excitement of finding out different ways of making things that had once been autopilot. Even though I'm not a vegan any longer, I still bake stuff a vegan way, sometimes, if I'm out of an ingredient or just wanna try something different.

I don't have as much experience with gluten-free baking, but it certainly can be done. While this sounds like something to mostly wait out, if it's not really helping and you don't like a lot of the stuff, you could still try and make the most of it while you kinda have to stick it out.

Problem: next year I have a cooking class. It's too late to change my schedule.

[Hiro Protagonest]

She won't have any of it. She thinks I wanted to try the diet because I wanted her to calm down. I was having a ****ty week. That's why I wanted to try the diet. Now the diet is making my weeks ****ty.

Oh, and she's whining that she spent a lot of money on it. You should have anticipated that I might want to stop if it didn't help. Those were my exact words when I wanted to try it: "If it works, we'll keep doing it. If it doesn't, we'll stop."

Guess what? It didn't work. Stop the engines.

Then... it's like this. If she really, honestly wanted this to make you happier, rather than just "better", then she would spend more time, not money, time, finding better brands. And she would cook your waffles just like she cooks everyone else's, rather than just leaving frozen waffles (which are bad enough when they have gluten) for you to put in the toaster.

She's obsessed over finding a way around Autism, she wants you to be more normal and feels you're ungrateful for her efforts. She feels that every time you consent to do something that she wants you to do, it's because you want to make her happy, and if you decide to stop, it's because you've stopped caring about that happiness.

I could be wrong, but this is the best psychoanalysis I can come up with using what you've given me.

I think the best thing to do would be to find statements made by autistic adults. There was a book my mom got from the library or something, written by a guy on the spectrum about his life. He dropped out of high school because nobody there understood him (virtually nobody back then had any idea what Autism is, and certainly not the common doctor or school councilor), and spent most of his time figuring out the technical aspects of his two interests: automobiles and music. He now runs his own auto shop, and has done some pretty important music stuff, including a guitar design for KISS that reflects light.

[Triscuitable]

Then... it's like this. If she really, honestly wanted this to make you happier, rather than just "better", then she would spend more time, not money, time, finding better brands. And she would cook your waffles just like she cooks everyone else's, rather than just leaving frozen waffles (which are bad enough when they have gluten) for you to put in the toaster.

She apologized for this after I confronted her about it. This means that while we'll all be eating gluten-free food, it'll be even more expensive, unnecessary, and my sister will hate me.

She's obsessed over finding a way around Autism, she wants you to be more normal and feels you're ungrateful for her efforts. She feels that every time you consent to do something that she wants you to do, it's because you want to make her happy, and if you decide to stop, it's because you've stopped caring about that happiness.

I could be wrong, but this is the best psychoanalysis I can come up with using what you've given me.

I think she just wants my misbehavior to stop, and wants something to blame. But I really haven't given enough information on that, yet.

I think the best thing to do would be to find statements made by autistic adults. There was a book my mom got from the library or something, written by a guy on the spectrum about his life. He dropped out of high school because nobody there understood him (virtually nobody back then had any idea what Autism is, and certainly not the common doctor or school councilor), and spent most of his time figuring out the technical aspects of his two interests: automobiles and music. He now runs his own auto shop, and has done some pretty important music stuff, including a guitar design for KISS that reflects light.

That's good advice. Thank you.

[Zrak]

Problem: next year I have a cooking class. It's too late to change my schedule.

I'm not sure, but I'd be kinda surprised if you couldn't substitute ingredients in the class. Regardless, that's some time away; if it still isn't working by next term, it's not like you gave up after a week, and it gives your mother more notice not to keep buying gluten-free food in advance, so she won't be left with a stockpile of expensive stuff that'll just get thrown away.

In other words, it might not be ideal, but you could always give it a little longer and try and make the best of it while giving your mom time to "phase out" the diet, rather than just stop abruptly.

Anyway, that's what I'd do. Doesn't mean it's what your should do, but it's an option.

[Zahhak]

These are thoroughly debunked myths. They are not true. It is a complete and total fabrication. Do not listen to these people! Do not do it!

[Serpentine]

Which people? And I did find a few papers that suggested there might be something to it, despite my expectations, although it's certainly far from proven, or proven useful. It certainly looks like it's doing more harm than good in this case.

[Triscuitable]

These are thoroughly debunked myths. They are not true. It is a complete and total fabrication. Do not listen to these people! Do not do it!

I'd like a source to this claim so I can point it out to my mom, please.

[Lord Raziere]

hahaha….

silly rabbit, you can't stop Autism with diets! its the fundamentally different way the brain is wired! since you were born!

the only way to help you with such a thing is to seek professional psychiatric help. and even then…you'll be dealing with it for your entire life and will never exactly pass for typical. its psychologically unhealthy to pass for typical anyways, since you can't really control the way your brain is wired. you'll have to work with it as much as you can control it.

but don't worry. Autism is not a "disability" or anything bad. its just a non-typical way of a brain working that doesn't play well with other brains.

[Triscuitable]

I appreciate your insight, but I'm 16, and I've spent four years in a school for it. I know everything I want to (and need to) know about my condition. Quite frankly, educating me on it is pointless; I know more about it than many people.

My mom just likes the idea of some way to stop it, and after a particularly nasty morning, I thought I should just play along, and hope for the best (if there was one; I highly doubted it). That turned out to be a really, really bad idea.

[Zahhak]

My mom just likes the idea of some way to stop it

She isn't going to find it. You probably already know this, but its related to your chromosomes. Your diet wont change that. I cannot find the article debunking the idea that diet impacts autism though. But the thing is, unless you're allergic to gluten or casein, there is no reason to cut it from your diet.

[Triscuitable]

That's what I figured. After the tension cooled, we explained our sides, and she said it's up to me (in a non-guilt-trippy way) whether I want to bother or not. Thanks, mom.

[The Succubus]

It really grinds my gears when patients try to diagnose themselves over the internet, or worse still try to treat themselves with stuff they've pulled off the internet. The problem is that once an idea lodges in a patient's head, they tailor their symptoms to suit the diagnosis rather than the other way around:

Doctor: Good evening Miss Smith and what can I do for you?
Miss Smith: Oh my God, I'm going to die!
Doctor: O-kay...can you be a little more specific?
Miss Smith: I'm suffering from Brain Devouring Ear Parasites!
Doctor: Come again?
Miss Smith: I read about it on Wikipedia and Web MD! I had a funny tickling sensation in my ear and then a short while later I had a sharp pain in the ear!
Doctor: That's a rather obscure condition. You don't think it might just be an ear infection?
Miss Smith: WebMD and Wikipedia wouldn't lie to me!
Doctor: There has only been one mention of Brain Devouring Ear Parasites in all of recent medical history and that was a paper submitted to ENT Monthly on April 1st by a student doctor who had drunk three bottles of Jack Daniels the night before.

...and the conversation turns downhill from there. Doctors are not infallible by any means but they do have the twin advantages of years of medical qualifications and experience. It's generally a bad idea to try and second guess stuff like that because you might neglect to mention something important because it doesn't tie up with your self-diagnosis.


This is a general rant, it's not aimed at you Trisc. *hugs*

[Asta Kask]

I'll ask around on a skeptical site I visit (here for those interested). I'll be backsoon.

[GnomeFighter]

Ok... Where to start on this...

First there has been some links between wheat and improvements in ADH & ADHD. All SPLDs are linked. I don't know if autistic spectrum disorders are the same, but I know that it dose not help dyslexia, dyspraxia or dyscalculia, the other three main SPLD's. It may help, it may not. It may well be complete rubbish, but it is almost impossible to tell with all the bunk and hokum from so many people despairet to cash in on people, like your mum, who want to do there best and want to make there child "normal" (I have been through it myself with my parents, and it makes me angry that people do this).

Having said this from my understanding it is wheat and not gluten that is the problem with some people with ADH & ADHD. Basicly, don't write it off, however exclusion diets are 100% absolutely should not be done without the supervision of a dietitian. It is far to easy to end up not eating the right thing and get very ill. My wife has a Sal and gluten intolerance and we have been through this.

I was talking to someone the other day whos son has some problems with gluten and it most certainly effects hit behavior. He had to do a two month gluten exposure for celiac tests and in that time he was excluded from school twice (despite the teacher knowing that this might happen... but thats another story).

Secondly I think you mum really needs to talk to you about this properly and needs to do some proper reading and work if she wants you to change your diet. If she wants you to she needs to put the effort in to making it as easy as possible, not just giving you the easy, discussting, frozen choice. There is no need to buy much special gluten free food. As long as you are happy without bread most stuff can be made using rice flour. Rice flour waffles would be rather nice based on my rice flour pancakes/drop scones (Very tasty and very easy)

Third:

Oh right, and today's Thanksgiving. What can I eat, mom? How about those mashed potatoes! No. Stuffing? No. Gravy! No. Turkey? Yes. Cranberry sauce? Yes (I hate cranberry sauce). Green beans? Yes (that's good, I guess).

A plate of turkey, gluten-free mashed potatoes, gluten-free gravy, and green beans it is, then.
...
Time for a gluten-free pumpkin pie. By the way, it was $20. That's outrageous. Not only is this diet full of shoddy food that tastes terrible, but it's also expensive as hell.

gluten-free mashed potatoes? gluten-free gravy? You don't need gluten free gravy. Use arrow root and rice flour in place of normal flour. I find it is less likely to go lumpy. And gluten-free mash? Why is there any gluten in mash? Unless you mean milk free mash, which is easy with margarine and soy or oat milk (unless you have a problem with oats). If your eating it everyone should be eating 90% of what you are. Most of it is not more expensive, it is just replacing wheat flour with rice flour and things like that. Easy, simple and the whole family should have it.

If you do want to try the diet to see if it works do not don't just try the gluten free c**p from the supermarket. Some is ok, but most is rubbish, especially the frozen stuff. I don't know what it is like in the US though...

If you like baking try these:

http://www.dovesfarm.co.uk/recipes/search-recipes/

You can search excluding certain ingredients. Even if you don't follow the diet they do some good stuff.

Also, if you decide not to go ahead with the diet I recommend trying some anyway. Buy excluding some ingredient I found it really pushed me to try new things and understand how the ingredient actually worked rather than juts following the recipe blindly. I now know more than any normal person needs to know about how gluten works in recipes and what it is and is not needed for.

Also, please sit down with your mum and talk to her about it and talk to her about going to see a doctor or specialist about it, and also by the sounds of it the problems you are having at school. As someone with an SPLD I really feel for you. I have dyslexia and dyspraxia and I know how school can be hell. It dose get better. Once you move in to work you will be respected, but the danger is that if you have problems at school you won't get where you need to be for your talents to shine.

Finally, it sounds to me like your mum changed your routine without discussing it with you by changing your food... Would this be correct?

Sorry for the ramble and sorry is any of it is rubbish or has been answered... I just want to help someone who is having the kind of problems I had.

Edit: Here we go...
For:
http://www.sciencedaily.com/releases...0229105128.htm

Against:
http://www.sciencedaily.com/releases...0519143401.htm

Unfortunately it is not as simple as either being a fact that it works or 100% rubbish.

And finally a bit of proof that diets effects on SPLDs is an ongoing area of research at the most respected of institutes: http://www.fabresearch.org/473

[TheEmerged]

however exclusion diets are 100% absolutely should not be done without the supervision of a dietitian. It is far to easy to end up not eating the right thing and get very ill.

I'm not sure that point can be bolded/enlarged enough.

[GnomeFighter]

I'm not sure that point can be bolded/enlarged enough.

Good point.

[Sipex]

Well, if your mom is so ready to believe what she reads on the internet, maybe you need to communicate with her on that level? I'd do a bit of digging, but my situation doesn't allow for me to trawl the internet for relevant articles at the current time. You'll want to find articles which highlight the absurdity of Americans adopting the gluten free diet as the next diet fad and articles which detail the good things that gluten does for your body. If you can find something credible which goes into detail about the potential repercussions of taking on a gluten free diet haphazardly, that will be really useful as well.

But first, has your mother ever told you that she believes you to have a weight problem? It seems gluten is one of those things everyone is convinced that if they cut it out, they'll lose weight. If this is the case, she might believe she's getting two birds with one stone which will only make it harder to dissuade her (and might explain why she's being so reluctant to take you off the diet).

[Mono Vertigo]

Mandatory disclaimer: not a doctor, couldn't advise you here even if I were.

You know, I find it funny that one trait commonly attributed to autists is a very strong fixation to specific hobbies or details, and that is exactly what your mother is doing, by being irrationally fixated with your diet.
I doubt she would appreciate hearing such a comment, though.

First, try to explain that if specific diets could cure autism, most doctors would know about it already. As in, they would not have doubts about it, they would be pretty certain of it, and currently, there are still doubts. Secondly, point out that your symptoms are not as terrible as the consequences of her diet, or the social consequences of your condition (again, point out the trait's symptoms and its social consequences are very different; for example, being black is anything but a disease, and yet, 50 years ago, black people were bullied at school, and what had to change was the attitude of bullies, not the presence of black students; not a perfect comparison, but this is one she should have no trouble agreeing with at least). Third, as mentioned by others here, and it is most important because she's most likely to be receptive to that one argument... that's a drastic diet, and you both need to see a specialist before undergoing it over anything but a very short term. You can't remove freely elements from your food and expect no bad consequence after doing it for long enough, if you are not absolutely sure of what you are doing.

Ninja edit: Sipex might be on to something. If your mother does think weight is a problem as well, then focus on my first and third point.

[Spiryt]

I find the theories about artificial and processed 'food stuff' being co-responsible for magnitude of problems to be very plausible.

However, blaming everything and it's brother on it, is obviously magical thinking, and not really sensible.

Somehow, wheat and dairy proteins = anti-social behavior. That makes sense (no it doesn't).

If someone really doesn't tolerate this stuff, and digesting process is very tiring and intoxicating, being restless, angry or whatever is not out of question.

It's impossible to tell without more details.

Finding out your actual tolerance to casein and gluten and it's effects together with other food would be obviously most sensible.

Maybe your body actually takes it well.