Aspergers, Diet, Nutrition - Please Advise

[BabyMae09]

I just found out that I'm Aspie. I think DS, 8.5, likely is too. We'd already cut out most grains (as a trial, before I found out for sure what was wrong with me) and both of us are feeling much better. I've been reading about the GFCF diet, and don't really want to try it; as I love cheese! I literally cannot imagine not being able to eat dairy, it's a huge part of my daily diet. DS doesn't eat it, as we are very sure that he cannot tolerate casein.

Does all dairy have casein in it - including, say, raw goat milk that I get from a friend? Has anyone tried this diet? What happened? Was it hard, did it work? 

If we cut out all grains (we still eat rice, millet, etc.) and dairy, what on earth will we eat? I'm being serious, I don't think I know how to cook without those two things. How will we get proper nutrition? Milk products (good-quality, raw) are generally good for you, right? I'm sorry if I sound really uninformed; I am, and I haven't had time to research it much yet. Any BTDT stories would be great.

Thank you in advance for your replies.

[babygirlie]

Well, I am pretty sure I'm aspie too and my kid. We don't do gluten. I know I'm allergic to milk but we both still eat it. Though she only eats it in 'hard" form like cheese and ingredients. We don't eat those things b/c of aspie but actual intolerances. Milk makes me dead nauseas and crampy. It makes her constipated but the opposite is her problem right now so I'm ok with her eating it. I'm just dumb and like ice cream :P

There IS soy cheese etc.

The gluten free noodles now a days are just like real noodles. They are pretty awesome. You can also bake your own GF bread. They have nice bread mixes. You can buy it and the tapioca is ok. My DH calls is squeeky though. It's also expensive and I just don't do it very often. Instead I will use corn tortillas. I have even gone so far as a tuna sandwhich with corn tortillas. A little bit of oil in a pan... your tortilla. Flip then add your tuna salad. Take it out pretty quick or else it hardens too fast. Roll them up and cut in half.

We do a ton of gluten free hamburger helper mixes but that has milk :/  You could easily make it on your own and add rice milk instead.

We add corn starch to anything that needs thickening and have a big ole bucket.

Meat is milk and dairy free.. so are veggies and fruit

Kix and rice Chex (and many brands of chex) are gluten free (not sure about milk). and again rice milk for the milk isn't that bad. Rice milk is pretty good actually.

I also have Interstitial Cystitis and have had to do the elimination diet a lot. For me I use plain white rice and roasted or boiled chicken. When I'm in a lot of pain I go back to that always and start adding in ingredients from there.

You can also use brown rice in everything you use to up your fiber. You need to make sure you eat your fruit since you're not eating those complex fibers.

Make usre you eliminate gluten completely or it really doesn't count. Gluten hides. It's even in Mcdonald's french fries! Though I can eat those with nothing but a headache... but I shouldn't.  Wendy's chilli is GF, outback has a GF menu. We actually have a pizza place and a chinese place that does GF. The chinese restaurant will use Amino Acids instead of soy. Soy has gluten. Watch for cereal because malt is gluten.

Check out the health food sections of stores and heath food places. They will have a GF aisle. Our Walmart just got a section even! The food is more expensive though. Beans and rice aren't though.

I will make bean enchiladas... corn tortillas beans and enchilada sauce... easy peasy. I add cheese and onions though.

Chicken nuggets.. just chop up some boiled or roasted chicken and roll in GF flour or a GF flour mixed with corn starch make sit crunchier and fry up.

It will probably take at least a year to find all the hidden gluten. For me it did anyway.

My daughter has never had gluten so I can't tell you the difference in her. When I added milk she seemed to get more excema though. Her teacher was saying it helps her niece tremendously emotionally. For me it causes straight pain so yes.. I'm less grumpy

Grits are GF. You can buy instant grits in the store or even rice mush for breakfast. Like cream of wheat only not :P You can buy GF oats/oatmeal but it's protein is VERY similar to gluten and I can't handle it at ALL so we don't use that here.

[deditus]

We are gluten, dairy, soy, and egg free. We eat very few grains. There is LOTS to eat! Fruits, veggie, meat, nuts, fats, coconut stuff, yum! I think Mark's Daily Apple is a good (research based!) place to start for inspiration on eating this way.

http://www.marksdailyapple.com/

[HRJ]

My son is not on the autism spectrum, but we have 4 children on DH's side of the family on the spectrum.  My son has had MAJOR behavorial issues w/ casein, and it has made all the difference in the world to have him off of it.  he's been casein free since he was about 22 mos.  My SIL says the casein wires her autistic child up worse than the gluten.  and I have found more issues w/ casein than w/ gluten.

In my opinion, if you can't do both GF and CF, I'd start w/ CF first.  It is major adjustment.  I am a big gourmet cheese freak too.  I have been GFCF myself for over a yr due to autoimmune issues (plus I had to cut out casein when nursing my son b/c of his reflux).  However, it is doable, and it is worth it.

A lot of people who have issues with casein, also have issues with soy.  And most Defeat Autism Now! drs will recommend being soy free when doing the GFCF diet.  Corn can also be an issue - esp w/ ADHD.  I have taken my child to multiple DAN! drs to have his food allergies dealt with - even though he's not a spectrum kid.  One DAN! dr that did NAET on him said that she'd pulled 80% of her patients off ADHD meds when she's dealt w/ the corn allergies.  And she had an autistic nonverbal child who's speech therapist fired him once she dealt w/ his corn allergy. That said, the GFCF diet tends to be the first line of defense.

There are cookbooks out there that make it easier.  But we do a lot of meat, rice, potatoes, and fruits and veggies.  Having a Whole Foods near us w/ a good gluten free section is very helpful as well.  And the gluten part was much easier to deal w/ once a great GF bakery opened down the street from us (they just started shipping by the way). 

I really cannot say enough about the GFCF diet, and my child's doctor has me GFCF during this pregnancy in order to hopefully lessen the next child's allergies.  Plus, I have read on the Autism Research Institute website that it is good to be GFCF during PG to prevent autism if you are more at risk. 

Eating out can be a challenge.  And I do miss my cheese.  I will allow myself a little cheese sample every now and then at Whole Foods as a treat - and that keeps me sane.  But to answer your question, I don't think milk and cheese are good for you - even raw.  I believe cow's milk is baby cow's - not humans.  There is a great book out there called Don't Drink Your Milk. 

[HRJ]

Also to answer your question - yes, goats milk does have casein in it.  When you go casein free, you have to read the ingredient labels and there are a lot of ways casein hides in things (such as whey). 

[HRJ]

Also, if you read through the Autism Research Institute info, a lot of people report the onset of autism symptoms when their child stopped nursing and went on formula or cow's milk.  The ARI recommends actually that if you can't breastfeed, you do a hypoallergenic/casein formula.  So I really do think that while the whole GFCF diet is important.  The casein is crucial. 

[tanyalynn]

Originally Posted by BabyMae09 

If we cut out all grains (we still eat rice, millet, etc.) and dairy, what on earth will we eat? I'm being serious, I don't think I know how to cook without those two things. How will we get proper nutrition? Milk products (good-quality, raw) are generally good for you, right? I'm sorry if I sound really uninformed; I am, and I haven't had time to research it much yet. Any BTDT stories would be great.

Thank you in advance for your replies.

We're gluten and dairy free, and DS is somewhat intolerant of soy--I don't have to eliminate every trace, but we don't consume stuff with soy sauce, tofu, like that--soy lecithin is fine.

re: the nutrients in milk--I haven't actually tried raw, I know some people do tolerate it when they don't tolerate pasteurized, but that protein is just tricky regardless and if it's a problem for you, then it causes a lot of stress on the body, and IMO the nutrients in the milk don't offset that.  I try to use more of other animal fats, I buy good quality beef and pig fat to render and I use them generously, but I also supplement A, D, and K2 (the kids have deficiencies, I actually supplement a ton of nutrients).  I'm not sure cow's milk will ever work for us--I'm hopeful that someday, cow's milk butter and goat cheese will be fine for us, but we're not really there yet (I've added in a little butter, not sure it's 100% good but I haven't seen any reactions). 

Meal ideas: eggs and fruit for breakfast (there are more ways to cook eggs than I realized), recently we've been eating bean burritos on corn tortillas and the kids love them; lunches can be dinner leftovers or I'll try to make a big pot of soup, say lentil with some bacon, sometimes chicken noodle with Asian-style rice noodles, Tinkyada rice noodles with pasta sauce are a yummy treat.  Easy dinners are stir-fries (they taste fine w/o soy sauce, or use a Thai-inspired curry paste), chili, ham & navy bean soup, red beans and rice, or our basic dinner: some sort of meat + something starchy (potatoes, sweet potatoes, a nice mix of root veggies) plus a green veggie.  Hamburgers taste good even without a bun--I make more fun toppings, guacamole, bacon, sauteed onions, regular veggie toppings, plus the starchy and green sides I mentioned above.

There are a lot of gluten and dairy free food blogs out there, not sure if you've got a traditional foods bent, but I actually got a lot of meals ideas and support for being gfcf in the Traditional Foods forum, and then I found the links to gfcf traditional foods blogs.  The Allergies forum is another place for meal ideas--people participate in the forum for a wide range of reasons. 

[daisymommy]

I just wanted to add, when you said you love cheese and eat it like crazy--often the things that the body is allergic to, we will crave and eat a lot of.  It gives off an addictive substance in our body, so we want to eat more of it, even when it's the worst thing for us.

[HRJ]

Originally Posted by daisymommy 

I just wanted to add, when you said you love cheese and eat it like crazy--often the things that the body is allergic to, we will crave and eat a lot of.  It gives off an addictive substance in our body, so we want to eat more of it, even when it's the worst thing for us.

YES!  I agree!  My son was addicted to cheese - it got to the point before we took him off of it where that was the ONLY thing he would eat.  Took him off, and he started eating normally.  It has an opiate effect in the brain - esp for those on the spectrum.  I crave cheese too and it is one of my allergens - we found out through allergy testing.  Once I went off of it (and went through the withdrawl), I really don't miss it too much.
 

[tanyalynn]

I noticed a jittery, irritable feeling the first day or two I cut out gluten and dairy--I did both at the same time.  Strangely, I didn't notice anything like that in the kids, but it was interesting to feel in myself.  I don't think DS has usual intolerance symptoms for gluten, nothing digestive or rashes or things like that, but when he was young he'd bang his head on the wall, and later he'd walk in circles or spin.  I haven't noticed any changes like that in myself, for me my fatigue lessened and eventually I've seen my moods improve--early on gfcf wasn't enough to help my moods, after a lot of vit/min supps, now I can make myself depressed by cheating with gluten and dairy over the course of a few weeks (thankfully not just accidental x-con or one night of contraband).
 

Originally Posted by HRJ 

YES!  I agree!  My son was addicted to cheese - it got to the point before we took him off of it where that was the ONLY thing he would eat.  Took him off, and he started eating normally.  It has an opiate effect in the brain - esp for those on the spectrum.  I crave cheese too and it is one of my allergens - we found out through allergy testing.  Once I went off of it (and went through the withdrawl), I really don't miss it too much.
 

[babygirlie]

wow. WHY is that do  you think? You would think our bodies would be smart enough to crave what we NEED.  Hm. I am still working on getting my 18m old to eat food and at one point her father was dumping mad cheese on everything she ate.. which she just picked out the cheese of course.

[HRJ]

Originally Posted by babygirlie 

wow. WHY is that do  you think? You would think our bodies would be smart enough to crave what we NEED.  Hm. I am still working on getting my 18m old to eat food and at one point her father was dumping mad cheese on everything she ate.. which she just picked out the cheese of course.

Because certain foods can cause opiate effects in those people w/ allergies to them or to people that don't digest them well.  It's like a drug addiction.  Cheese was all my son would eat, and when I cut it out of his diet, his palatte opened up and he ate all sorts of things.  It was just amazing. 

[Ravenlunatic]

I would also like to chime in to plant the seed that some of the latest research shows a 'G.A.P.S' diet or 'SCD' diet for autism disorders.  This diet is 100% grain free, dairy free and most starchy vegetable free diet.  I am on it and have been for 10 months... it is tons harder than just GF & CF, but that is a good place to start.  Check out this link to learn more about the diet I mention.

http://www.gutandpsychologysyndrome.com/