Mothering Forum banner
1 - 20 of 24 Posts

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #1 ·
Hi


I've been reading exhaustively again..(problem of mine) about GF/CF stuff with ASD kids...My son was just diagnosed..we thought he was lactose intolerant (as I am) and around age 2.5 took him off all lactose..he grew 6 inches and gained 6 pounds in 6 months. His pediatrician was very happy. He also improved in a million other small ways, like no more night terrors, no more inconsolable crying, etc.
Interesting...So...now his diet is seriously gluten heavy. I just read that ppl who have problems with Gluten may CRAVE it and only want to eat it. WOW!

Ok, so I'm willing to try a GF/CF diet. No problem. Big PROBLEM..what will he EAT? I mean, seriously, this kid eats bread, tortillas, pasta, apples, oranges, cookies, and jello. That's IT.

So how do I get him to eat if I do GF/CF...what do I try? Point me to some links too, if you have them.
 

·
Registered
Joined
·
9,186 Posts
Weeeeeelllllllll......I have been advised against it by several of ds's therapists for now because he IS such a picky/limited eater, and the GFCF diet, while technically helpful, would be disaster for us. BUT IT IS A GREAT DIET FOR MANY FAMILIES. (my disclaimer
)

When we get the $$, we're going to start him on enzymes that are SUPPOSED to be effective enough to use instead of going GFCF. Link:

http://216.114.78.114/webcenter/site...34&N=Peptizyde

I seriously need to get off my butt and order it.

ETA: Links for gfcf diet resources:

http://www.gfcfdiet.com/
http://www.autisminfo.com/diet.htm
 

·
Registered
Joined
·
9,186 Posts
Thanks for this, I just got off my butt and ordered the enzymes.
BTW, they apparently have updated their website, the new link is:

http://www.houstonni.com/

I ordered peptizyde and zyme prime. Here's their info re: GFCF alternative

Quote:
Can I use enzymes as an alternative to the GFCF diet?

Some have wondered whether enzyme products such as Peptizyde™ are meant to replace the gluten-free/casein-free diet. After much feedback from parents on the use of these products, the answer is now: "Definitely" for some, and "quite possibly" for many others.

HNI believes that these enzyme products can produce as good, or even better results, than the GFCF diet. It is not the position of Houston Nutraceuticals to detract from the usefulness of the GFCF diet. We feel that high-quality enzyme products such as Peptizyde™ are meant to achieve the same purpose as that of the diet: to reduce the amount of exorphin peptides produced from diet. Based on well-characterized mechanisms of enzyme actions, one may assume that supplementation of the GFCF diet with Peptizyde™ helps to not only reduce or inhibit the production of exorphins from food proteins, but supports digestion, insures complete degradation of food proteins, and increases bioavailability of food proteins.

HNI is, however, committed to the advancement of effective enzyme products as an eventual proven and safe alternative to the GFCF diet. Due to the established safety and non-toxicity of enzyme-containing supplements, HNI is of the opinion that parents have the right to try any and all means to better the lives of their children and their family. As the wheels of science often turn slowly, parents should have the option to try SAFE alternatives to the GFCF diet. It is the opinion of HNI that sufficient historical, anecdotal, and scientific evidence is present from the use of hundreds of enzyme products to justify such experimentation in a prudent and responsible manner, and should be allowed without repercussion or harsh judgment put upon those who try.

HNI is neither for nor against the diet, but rather for a resolution of the dietary problems faced by many families.
Don't get me wrong, I think the GFCF diet is great. It really and truly is a miracle diet for just about everyone I know who tries it. However, due to the fact that my son has a diagnosed feeding disorder, and has an extremely limited repertoire wrt foods he'll eat, GFCF is not a viable option for us right now. Just wanted to give you other options if that's the case for you, too.
 

·
Registered
Joined
·
1,001 Posts
Definitely, definitely true that people who are sensitive to gluten may crave it. I have found this to be the case for MYSELF even. I feel better after cutting gluten but I loved eating everything with gluten. I used to be able to eat an entire loaf of sourdough bread in under an hour because I'd crave it like drugs.


DD has been GFCF for nearly a year and on SCD for 3 months now. She has suffered from an extremely self-limited diet in the past, and I would have sworn up and down that she'd have just starved herself when we took foods away, but that's not what happened. She fussed for a few days about it but then started accepting the alternatives. Early on, we had to use an almost ABA-like approach with some fruit juice because she refused to try anything new. She had to take two bites of the new food, such as a turkey patty, and then she'd get a few mouthfuls of juice. She loves turkey patties now and even as a former EXTREME picky eater now readily asks for bites of new foods that she sees other people eating. She still has trouble with some textures, for example she still hates soup or any fluid foods, but she will eat steamed broccoli, fresh avocado, baby carrots, all kinds of things that I used to daydream about how great it would be if she would eat them.

When you're just cutting gluten, you can usually replace with alternative flours. You can make some pretty good breads fairly easily with rice or bean flours. For tortillas you can substitute corn tortillas unless he's sensitive to that. Brown rice pasta or corn pasta can be substituted for wheat pasta through most health food stores. As for links, the best source I have found is a Yahoo group called GFCFKids. For books, there are a series of two called "Special Diets for Special Kids" by Lisa Lewis...those gave me some great meal ideas for the beginning.

ETA: I think enzymes are a good alternative too. We just opted to do it this way instead because I was afraid it would take too much trial and error to find the right dosing of enzymes, plus it could be more expensive. And DD's sensitivities are extreme enough that cutting the foods out is a safer bet for us and I keep enzymes on hand in case of infractions.
 

·
Registered
Joined
·
1,341 Posts
Hi there,

I'm not an ASD mama right now (I am actually looking into sensory issues for my daughter) but she has reflux so I frequent the board here.

Anyway, I was just diagnosed w/ celiac disease a few months ago, and I have problems with dairy (as does dd, 17 months) so we eat a GF/CF diet for the most part. I have had dd tested for celiac and it came back negative, but she was already eating gluten free for the most part for a month before the bloodwork so I'm not sure how accurate it is. I do let her have a few gluten snacks, but our meals are GF/CF for the most part. I have to admit I'm not as vigilant on the CF, because it's mainly direct exposure to milk/cheese that bothers me, not so much a hidden ingredient in something, KWIM?

Anyway, some good substitutes for what he eats would be corn tortillas instead of flour... you can also make roll up *sandwiches* with them, and they are easy to find in the grocery store. Corn and rice are both allowed on the gluten free diet. I have tried *lots* of gluten free breads and I have to admit I'm not keen on most of them, so I use the corn tortillas a lot.

One company, kinnikinnick (you can look them up, they have a website you can order stuff from... we do it all the time) has some VERY tasty GF/CF stuff.... bagels, donuts, mixes (for pancakes, cakes, etc.) and cookies. Their cookies are GREAT! I love the montana's choc. chip cookies, and they have some good oreo substitute cookies too... all are GF/CF I think. They have a very easy to read guide that lets you know what each product is free of (gluten, casien, soy, egg, etc.) A great majority of their foods are GF/CF.

The fruit is still fine of course
and jello is fine too as far as I know (we still eat it anyway
) As for pasta, there is a company called tinkyada (I think that's how it's spelled) that has good GF pasta... I'm not sure that it's CF though you'd have to check. I think the pasta is made out of rice flour. I also think that Amazon carries this now (they carry a ton of GF products now with free shipping!), and most HFS carry it (my tiny local one carries it) so it's fairly common.

Hope that helps a little. Honestly it's not as hard as I thought it would be, and I have been able to find GF/CF substitutes for my *goodies* too (donuts and cookies
) So I think you'd be able to find stuff that he likes that would fit the GF/CF criteria. I will warn you that GF/CF diet is a bit more expensive than your standard american diet... and in the beginning you will try GF/CF stuff that you don't like. There are some good GF cookbooks out there too (and you can just modify recipes for CF too... or pick ones that are naturally CF) and I just searched a lot of them on the internet and then went to my library and requested them, and wrote down the recipes I liked.

Good luck if you do decide to try it! I am so glad I did, I feel a lot better (I also have RA and it has worked wonders for that too) and my dd's digestion is improving as well. There are tons of support groups/websites for GF/CF eating with kids, so you might want to do a search for those too.
 

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #6 ·
Thanks so much, everyone!!

Krissi..what is SCD? Thank you so much for all that information. I need more information on ABA, as I think I want to request it from the school system since they offer it only if you request it as a treatment. Just from the little bit I read, I see how it can work with the diet. He's so small and skinny I worry about his eating probably way too much. Good to know corn may be ok. I will see if he'll accept a corn tortilla instead, maybe that will help us through.

I talked to DH and he's totally on board. We figure, what can it hurt? We have to try it. I don't expect a cure, but I hope it will help him.
 

·
Registered
Joined
·
1,001 Posts
SCD = Specific Carbohydrate Diet. It is more restrictive than GFCF and cuts out all grains including rice, most types of sugars, and other things. Any baked goods have to be made with nut flours, and unfortunately for us, DD is allergic to nuts...so we're eating no breads of any type and her diet is primarily turkey and beef patties, veggies, fruits, and a boatload of nutritional supplements. It might be something to look into if you don't get satisfactory results from GFCF. It is a much harder diet but has resulted in awesome gains for DD; but she is also documented to have quite a case of leaky gut and had IgG sensitivities to most grains when we tested her (even rice). This site has more info on SCD if you're interested in it:
www.pecanbread.com

I agree on many GFCF breads not being too tasty. I wouldn't waste the money on storebought loaves; I never found a single one I liked. Homemade GFCF bread always worked better for me, particularly this recipe:
http://www.celiac.com/st_prod.html?p_prodid=1161

And it helps to toast them before you eat them for some reason, even for sandwiches. Toasting greatly improves the flavor.
 

·
Registered
Joined
·
1,714 Posts
If your family has a history of milk/wheat problems, the diet may be worth trying. Consider asking your ped for a celiac sprue test to see if there is a medical issue w/gluten, too. My DS was tested for various food allergies and intolerances, including casein/gluten, and all the results came back normal (as we expected -- DS has never appeared to have intolerances or "addictions" to certain foods). Be aware that even Karyn Seroussi, a big advocate for the GFCF diet, admits that the diet does not work for most children on the spectrum, just a select group with specific symptoms.

Instead of thinking in terms of what your child CAN'T eat, try to think of the options that are now open: fruits and vegetables are all GFCF, rice, potatoes, sweet potatoes, quinoa grain, eggs, nuts & seeds, peanut butter and other nut butters, fresh non-processed meats, plus beans and legumes. Isn't that the type of stuff you'd prefer your child eat anyway?
I make GFCF chili and stews to diversify my DS's diet, lots of GFCF stir fries w/rice or rice noodles, and my DS often requests eggs, potatoes and fruit for a GFCF breakfast. I'm a big believer in a diverse diet -- it has helped my family so much!
 

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #10 ·
Thanks again everyone..after reading most of Karyn Seroussi's book and knowing our family's history of Lactose intolerance and other gut issues, I know I have to try this, as hard as it might be at first. I need to get Lisa Lewis's book..hopefully my library system will have it (I live near Atlanta and am part of that county's library system so I have a good feeling) because I spent my extra money last night on Engaging Autism


I am just really convinced, and a bit daunted. Luckily my best friend here has been GF/CF for about a month (her kids are allergic to dairy and wheat, but have no autistic characteristics) so I will get some tips from her on what she's feeding them.
 

·
Registered
Joined
·
56 Posts
Hey, I've been working as a special education teacher with children with ASD for years and I have seen many mothers/families make a good transition with products from Road's End. I know I should get a job advertising for them, but their stuff is really good!!!

To be honest, I've seen better results in kids with ADHD on this diet; however, the parents I know who have tried it on kids with ASD were not as devoted to the diet!!!
 

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #12 ·
We're working well so far..we've got some good GF/CF vitamins and calcium supplements and we're making food for him that's GF/CF and he's eating it so far. He was happy with brown rice tortillas at first but now is not so thrilled. I think we've hit withdrawal though..and yesterday we were at a birthday party and he was really ticked that he couldn't have the regular cake..there was a gf/cf cake available (this is a friend whose kids have allergies) but he would not even consider that one. We also had a fit last night over lentils and rice.

We'll do this, because I think it's right. If it does not work, no big thing. I have only to gain and nothing to lose.
 

·
Registered
Joined
·
322 Posts
We have not yet done the full GF/CF diet yet but I do use enzymes with good results. We havent had alot of obvious gluten and cassien issues. I do use an organic no sugar diet with the kids and it was a slow transition but now they have a much better range of things they will eat.

They were picky eaters and still are in some ways but overall doing great on thier diet. I may add GF/CF but first we are doing amino acids then maybe chelation. one thing at a time.

Renee
 

·
Registered
Joined
·
721 Posts
We are doing very well with the diet change. We are learning to make all the things we usually eat in different ways.

From what I understand children who will only eat cheese and breads will start enjoying other foods once their guts start healing.
 

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #16 ·
That's good to know SandyBB..I hope that is what happens here. We're getting a bit better, with just one little fit last night..but that was frustration more than anything since we're also working on asking for what you want with words and sentences, and he didn't want to do it last night...but I am a stubborn mama..
I also got some corn tortillas instead..you know some of the ingredient lists on those things is scary...but no gluten as far as I can tell.

OH..and we already had a solid poop! TMI, I know, but I swear that might have been the first one in months. I'm stoked
 

·
Registered
Joined
·
247 Posts
Quote:

Originally Posted by Megamama
Thanks so much, everyone!!

Krissi..what is SCD? Thank you so much for all that information. I need more information on ABA, as I think I want to request it from the school system since they offer it only if you request it as a treatment. Just from the little bit I read, I see how it can work with the diet. He's so small and skinny I worry about his eating probably way too much. Good to know corn may be ok. I will see if he'll accept a corn tortilla instead, maybe that will help us through.

I talked to DH and he's totally on board. We figure, what can it hurt? We have to try it. I don't expect a cure, but I hope it will help him.

Hi, sorry but please do not cut corners and give him enzymes thinking it can take the place of the diet, It cannot unders any circumstances.
We have been gfcf for two years and it's absolutely fine and doable and easy - you just have to remember to throw a meal together in the lunchbox when you go to restaurants and amusement parks sometimes. You can not give him "just a little wheat" or just a little piece of cheese - it has to be 100% or it's fruitless.
Two great sources for you: www.tacanow.org
and Special Diet Special Needs ( I think that's the iright book title - at anyrate you will see it on the reading list at TACA (Talk about curing Autism)
Good luck and stay strong!
 

·
Registered
Joined
·
832 Posts
My ASD youngest son doesn't have any of the stereotypical traits that I usually see people talking about when they're talking GF/CF - no apparent gut issues, behavioral issues, stimming or sensory stuff except for being a picky eater. He doesn't seem to crave carbs and he doesn't like cheese. He is nonverbal and totally self-directed but a happy little guy. Are there still reasons to try this diet?

Full disclosure - I have 2 other kids and changing everyone's diet would really be a nightmare for me during this very stressful time. So if I sound reluctant it's because I am!
 

·
Registered
Joined
·
2,903 Posts
I have nothing of real use to add, but I wanted to thank the OP for this thread. It just turned on a lightbulb for me. The other day, while my oldest {Asperger's} sons therapist was over she mentioned that she wanted to have our five year old evaluated, too. We know that he has some oral sensory issues and is a major carb addict - I did not know that gluten craving could be a sign of intolerance!

How expensive is it to do a GFCF diet? Is it generally necessary to do both or can cutting out glutens alone be a benefit?
 

·
Registered
Joined
·
1,439 Posts
Discussion Starter · #20 ·
It's costing us a little bit more to do the diet, but not much because we are lucky to have a natural food warehouse here.

ernestholmes: we have started the diet just the other day (friday) and have not used any enzymes but thank you for that tip. Eli slipped yesterday (I had let his baby sister have cheese..something Eli never ate in the past unless it was melted) and grabbed a tiny piece of cheese, but it doesn't seem to have hurt.

Jaye: In the books I've read so far it says that only 50-70 percent of autistic children are "responders" to the diet. Your son might or might not respond. If you don't feel like you need to do it, then you might not. I can't answer that question not being qualified, yk?

JessiKate: The reason you do both types of proteins is that they can both get thru the gut lining and act as opiates. If you cut the gluten and not the dairy your children may still have problems. In fact, cutting the dairy first might be better. Good Luck! I hightly recommend the book by Karyn Seroussi.
 
1 - 20 of 24 Posts
Top