Looking for info on special diet for ds

iVillage Member
Registered: 03-26-2003
Looking for info on special diet for ds
8
Sat, 11-04-2006 - 4:15pm

I did a search for "special diet" on this board, but I couldn't find exactly what I was looking for.


What is the recommended diet for kids with ASD? Is it flour-free, sugar-free? Gluten-free? Something else?


Henry has always had major issues with constipation that are *finally* starting to ease a little--now that he is 6 1/2.


Is there a forum on this particular diet? A website or book you could recommend?


I found a couple recipes that looked really yummy when I did a search here, and they both referenced "pecanbread". I tried pecanbread.com, and I found that website to be difficult to read. I copy/pasted the 2 recipes--one was golden pancakes and the other was peanut butter brownies. (Question--what sort of syrup do you use with those pancakes??)


Thank you!


iVillage Member
Registered: 07-06-2006
Sat, 11-04-2006 - 4:56pm

Try this
http://www.autismdiet.com/

I have not tried the diet, but there is a lot of info here. Good luck!

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Sat, 11-04-2006 - 9:50pm

There are a number of available diets you could experiment with. I tried gfcf and did not see any improvements. I tried SCD and did see some improvements, such as a significant reduction in seizures, but found it difficult to do strictly for a number of reasons (social, financial, etc). I try to stick to it as closely as possible, try to stay away from wheat, but we'll eat rice. SCD is hard to get through and I had to read the book a number of times, but it is educational.

There is the low oxalate diet. I never tried that one. You could go all organic. You could do a lot of things. Soy made my daughter's seizures worse and that is not an allergy thing, but a chemical thing. Soy is high in glutamates and also is not a complete protein as you made hear frequent claims declaring it to be so since it contains no taurine. Glutamates are a regulatory issue for ASD kids.

The thing is to not to completely trade real life experience for what you are told. Try new things and if something isn't working, it isn't working. You will often know pretty quickly if what you are trying is having a positive effect or not.

As for the syrup question...they honey syrup is awesome. I never really liked honey until we went SCD and then it was our only source of sugar. I ended up liking honey syrup better than Mrs. Butterworth, even when we were no longer on SCD.

iVillage Member
Registered: 01-19-2005
Sun, 11-05-2006 - 1:30pm

Hi there, first I wanted to say how lucky your children are to have you as a mom. I see you here posting with your q's on so many things and that is exactly what you need to do!

About the diet. I just wanted to build a bit on what LR said. I know this will be a book, and I am just sharing my personal experiences, I am not a professional nutritionist, though I know more than I used to! LOL! Also, forgive me if I am oversimplifying things. Also, anyone else correct me if I am wrong here.

IMHO, not every ASD child needs a special diet. If your DS eats a good, well-balanced diet, is a normal weight, and does not have any bowel or GI issues, than I would not worry. Dietary stuff, to be honest, is a pain and adds one more thing to your "to do" list.

However, if your child DOES have bowel issues, does not eat a decent variety (not just normal ASD "picky" but really limited), is not gaining weight or is really overweight, then you might want to investigate. In our case, though it has been a lot of work, the dietary interventions (along with ST, OT, ABA etc.) have been very important to improving my DS's quality of life. Like anyone, if you feel better (no tummy issues) you do better. I think. In our case, none of the diet stuff was "a cure" and our son is not "recovered" but I know he is healthier and thus doing better behaviorally.

So, there are a million diets and they are each designed to do differnent things, address different issues. I'll try to summarize what I know about a few of them:

1. GFCF (Gluten-Free, Casein-Free Diet):
THEORY: designed to address children who are intolerant to dairy products (i.e. cow, eggs are ok) and gluten products (anything containing wheat, barley, rye, spelt and more, those are the main ones, I think.) The idea is that people with this problem do not metabolize gluten and casein correctly. Instead of being broken down, foods with these elements "act as a drug" kind of like an opiate. These kids become "addicted" to these foods, though they are not getting the nutrional value from them they should. For a lot of kids who have trouble with milk, soy also causes problems, so some end up GFCFSF too.

SYMPTOMS: A "symptom" might be that all they will eat is yogurt, milk, mac and cheese, goldfish, chix nuggets, cheerios etc. You might notice after eating these items a child is more spacey or less responsive, or alternately more aggressive or more stimmy. In short, some ASD tendancies get worse. Some kids (like mine) have diarrhea bc they can't digest the milk. Due to all that dairy, he had a harder time getting rid of colds and also had a kind of eczema.

RESOURCES: I'd get these books second hand, if you can but Amazon has them. Lisa Lewis, "Special Diets for Special Kids, vol. 1" it read like a dissertation, but also has recipes. Her vol 2 is mostly recipes. Lisa is most comprehensive on the "theory" but a bit thick. Website: www.tacanow.com has a step by step "how to" ease into the diet in 10 weeks, which I think is the best way. Also good lists of products. I also like Bette Hagman's cookbooks, "The Gluten-Free Gourmet Cooks Comfort Foods" actually has a little autism section. For us, just using Stage 1 of the South Beach diet worked best. It is easier for us now just to eliminate trouble foods rather than make or buy substitutes. Newsgroups: Yahoo's GFCF kids and GFCF recipes.

Personal experience: After one week dairy-free, diarrhea and eczema cleared up. After one week GF, less "spacey." It definitely helped. A lot. But over time, we tended to replace wheat with rice and potato products, both added to my son's emerging problem with constipation (more on that below). Helped his "brain" but hurt his tummy.

2. SCD (Specific Carbohydrate Diet):
Theory: Elaine Gottschall's book "Breaking The Vicious Cycle" addresses the gut-brain connections for a number of physical and neurological conditions. I found this to be a very interesting book. Too much to go into here, everything from how digestive enzymes work and what could be wrong, to the "opiate" theory above, to overgrowth of yeast and bacteria and how that affects the digestive system and the neurological system. Second part of book is recipes. The diet is GF but also no rice or potatoes, totally grain-free. For baking, you use "flour" that is made from nuts (basically just crushed almonds or other nuts). It does include some dairy (mostly goat's yogurt and a few cheeses). This diet is more restrictive in some ways than the GFCF. But everything is designed to be easily digestible. You have to get the book to know what you can and cannot eat, but it is basically low and "specific" carbohydrate, high protein.

SYMPTOMS: Children who have "failure to thrive," no weight gain, often very ill, serious GI trouble like diarrhea or severe constipation. Children with frequent yeast infections do well on this diet. The emphasis is to "heal" the gut by sticking to a very strict, all-natural, easily digestible diet.

RESOURCES: Elaine's book above gives most info, also www.pecanbread.com There is a yahoo parents' group also called pecanbread. For recipes: www.scdrecipe.com has lots of links to other scd sites.

3. Feingold Diet:
Theory: This first gained popularity decades ago for helping ADHD children, but it also helps ASD childen (who often have ADHD symptoms too). Basically it calls for eliminating anything artificial, like dyes and presevatives, cutting out sugar and processed foods. Much of what was "new" when this diet came out, in my opinion, is now just accepted good nutrition. I know there is a book on on this, you can probably google Feingold.

RESOURCES: anybody feel free to chime in. The Feingold Association looks good, www.feingold.org

4. OXYLATE DIET:
Theory: This is a new one, I think the idea is that certain foods that are high oxylates (and I don't know much about this, LR knows more) cause more ASD symptoms. I know this was a new thing with the DAN docs.

RESOURCES: I just googled this, from the Great Plains Labs website.
www.gpl4u.com/oxalates/oxal-test.pdf

GENERAL THOUGHTS: Like LR said, every child is different. I hate to say it, but it pretty much comes down to trial and error. Once you identify what your child's problem may be and have researched what you want to do, start a diary and note all foods eaten and if there was a reaction. After awhile you may see patterns. Only change one thing at a time so that you know which thing is the potential trouble-maker. I also found going to a nutritionist helpful at the beginning, especially regarding vitamin supplements to complement the GFCF diet.

We also ended up going to a pediatric GI who is "ASD-friendly" bc most of his practice is special needs kids. He had some good suggestions for us about how to "mix and match" things from the diets, now ours is "customized" for our child. But I get the feeling our GI is unusual, younger, more enlightened than some.

In the end, we've settled into a broader variation of the SCD diet, but we limit the dairy much more and allow some grains. It is a happy medium. In our case, I am still glad we started GFCF as it gave us kind of a "baseline."

Also, don't be discouraged if you don't see any changes. It may mean your son does not have these kinds of issues.

I don't know if I've made things clear as mud, but maybe helped a bit. Feel free to ask any specific questions.

HTH,
Katherine

iVillage Member
Registered: 06-25-2003
Sun, 11-05-2006 - 7:57pm

Wow!


Thanks for all that info Katherine. I learned quite a bit there.


-paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Mon, 11-06-2006 - 2:20pm

Thanks for all the information.


I really appreciate it, but now I'm confused.


And when Henry was younger, I tried to implement a dairy-free diet and all the people around me made it their mission to give Henry dairy products whenever I wasn't there--pizza, cheese toast, milk, etc. I was limiting dairy due to Henry's chronic constipation.


I'll have to do a bit more research to see which one I could try with the least amount of resistance from Henry and the rest of my family.


iVillage Member
Registered: 01-19-2005
Mon, 11-06-2006 - 3:40pm

Hi again,

Don't be confused. You are right, in general, too much cow's milk and dairy CAN cause constipation. I think in most people it does. Constipation is also caused by too little fiber and not drinking enough water. I think many things can cause it.

It was just in the case of my son, who having nothing necessarily to do with autism, is also allergic to cow's milk. In him, not all children certainly, it caused diarrhea. Sorry if I did not make that clear.

Also, my son also has a lot of GI issues, so I would not presume to say his reactions are the norm. Although, it seems to appear there is at least an observational trend among parents that some ASD kids do tend to have more GI issues than the rest of the population.

Each person and each child is different. The same foods can affect people in all different ways. Just trust your instincts and use your common sense, read and research, maybe talk to the medical professional of your choice.

Katherine

iVillage Member
Registered: 01-19-2005
Wed, 11-08-2006 - 5:29pm
bumping this up for Lisa to read.
iVillage Member
Registered: 03-26-2003
Wed, 11-08-2006 - 10:08pm

Robin,

Each time we started a special diet for the kids it was like relatives thought we were denying the children and would put an extra effort to have sugar for them. It really chapped my hide. But fortunately this last time the kids were older and easier to reason with. So at birthday parties I would give them a limit (you may pick 2 sugar things the entire day) so they wouldn't be totally "weird" and they were reinforced for sticking with the rules and we left if they couldn't.

That got the inlaws to knock that off pretty quick when the kids were correcting them. Nothing quite like being lectured from a 9yo aspie on eating Organic, lol. They started to have healthier options available for us.

Renee

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