Gluten Free Diet

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Does anyone do this? Does it help your kids really?

My mother is pressuring me to try this with my son, but she really doesn't understand what this means. She thinks it just means not buying wheat bread. She doesn't understand that it means cutting out everything with gluten in it. I have two concerns really.

1. My son's diet is already so restricted, that I'm not sure what he would eat. I have already eliminated peanut butter except on weekends. Peanut Butter seems to make him very hyper and unfocused. He won't eat red meat, unless it's a hamburger, bacon or sausage. He eats very little fruit and vegetables. The only vegetables I can get him to eat are peas and potatoes. He'll eat a little bit of apple or an orange on occasion, but otherwise that it for fruit. He does like seafood and fish, but I don't want to burn him out on those things. Rice is okay, but only plain rice. He does eat bread, cereals, waffles and that sort of thing. I have tried so many techniques to get him to eat something better than the french fries and sausage that he had with my mom almost every night when we lived there. He does eat dairy products well.

2. Another concern I have is that things will actually get worse before getting better. I don't want to do a two week trial period of gluten free and end up going through two weeks of outbursts and such before he adjusts.

Can anyone tell me stories of success or failure with this, and also ideas for getting him to eat something besides his very narrow diet. It's a nightmare for lunch at school. I'm runnin gout of things to send.

We're doing GFCF with my son, and I think it makes a difference. Our whole family is doing the diet (it didn't seem fair to just "inflict" it on him"). It's a bit flabbergasting at first, but once you get the hang of it and experiment with various bread substitutes (I bake my own now), it's really no big deal. Our son was pissed at first (he just turned six, and we've been doing the diet for probably three or four months), but now he's totally accepted it because he sees how many great tasting foods there are out there that are gluten-free. It will be handy for you if there's a health food store near you. If not, you can order a lot of stuff online. Also, there are tests you can get which will show if your son is having trouble digesting gluten (this is different from an allergy, or Celiac). If he is (like our son does), the gluten can actually remain in his body and basically turn into a toxin, affecting behavior. Does your son act out a lot? If so, diet is a good place to start. I know a lot about this diet, so pick my brain if you need to.
Also...there's a great line of liquid vitamins for kids on the spectrum -- BrainChild Nutritionals, available at http://www.brainchildnutritionals.com. They're a bit expensive, but loaded with vitamins and minerals and highly absorbable. We discovered that shortages of certain vitamins and minerals can affect behavior as well.

Thanks so much for responding, Masonjar. I've considered trying the Gluten free diet for myself because I have a lot of gastro issues. I just don't know how much benefit I'll see with my son for the hassle of starting this.

I don't really have behavioral issues. What I have the most problems with are:

organization -- he cannot seem to put anything back on his own without dozens of prompts or else intervention.

Unwillingness to do work he deems boring, distasteful, or just doesn't want to do-- most chores fall into this category, as does homework and school in general.

Lack of focus.

Occasional meltdowns, usually over homework.

He's not really defiant, just inattentive and unfocused. He'll start something, have a great idea, work on it gung ho for a while, then something else will catch his attention and he'll do that and forget about the first topic.

Some of my problems with him stem from living with my parents (I'm a single mom), and my mom was both overly critical and yet she refused to give him any sort of responsibility. So I'm having to undo a lot of the problems caused by that situation. It was a real mess. He's 10 now, and I'm not sure if I want the battle changing his diet will cause.

Also, there are tests you can get which will show if your son is having trouble digesting gluten



what's the test??????

The GFCF diet seems way too daunting for me. Just looking around my kitchen, I was thinking...what doesn't have gluten or dairy!?

That's the thing with the diet. Everything, at first, does seem to have gluten and/or dairy. So what you have in your kitchen right now most likely won't work for the diet. But once you discover all the great stuff that's out there that is GF -- and there is a LOT out there, plus what you can make on your own -- you'll be amazed. If there's not a decent health food store near you, a great web site is http://www.glutenfreemall.com/. It takes some dedication, but once you dive into the diet and train yourself what you can and can't buy, it's not that big a deal.


It was a urine test we got from our pediatrician. We then got the sample from our son, froze it, and sent to a lab in Wisconsin (or Kansas, one of the two...there were two urine tests we did). Anyway, it tests for the amount of gluten peptides coming out in the urine as compared to something-or-other that comes out of the kidney (I'm obviously not a doctor), and the level of peptides was extremely high in our son. If you need further info I'll dig out the test results and tell you more.

Last edited by MasonJar on 25 Sep 2007, 12:12 am, edited 1 time in total.

BTW, Tayana, are you raising our son? Those are the very issues we have with our son. Are these constant with your son? Because I must say that we've been having some very good days with our son. I took him to the Science and Nature Museum last Friday, since his school district had no school on that day, and he did beautifully the whole time we were there, which was probably four hours. But, he then melted later that evening at home. I think it's a lot of effort to keep it together all day.

I don't know, MasonJar, maybe . . .

We have good days, not so good days, really good days, etc. When we're doing something he's really interested in, then he's really "on." We have no difficulties with attention. Like last night we worked on a report for school for science, and he was really on, really into it, providing far more detail and information that is really necessary.

Things like regular homework, i.e. busy work type activities, are a fight to finish.

We don't do well when we're tired, hungry, don't feel well or anything like that. That goes for both of us. If I'm tired and hungry, my patience wears very thin. It wears very thin in the mornings when I can't get him going either.

I do notice that if he's tired that he needs a lot of time to sort of "come down" off his high. If we've been to a museum or something like that. He needs time to sit and do things alone or watch TV or movies or something like that. I do think it's hard to be "on" all day. I think that's why school is so hard. There's no time to just relax for a little while.

Hi All~

First I've not posted here before, so forgive me if I'm out of context somehow.

Boy am I glad to see this conversation going on. I am getting ready to quit my full time job for various reasons and one of them is to try this glueten free diet.

I have a son who will be 13 soon (too soon! ) and his eating habits are atrocious. However, he comes by it quite honestly (as I sit here eating my dinner.... a bowl of pasta sprinkled with cheese ). My younger son doesn't eat well either, so it's high time I began enforcing (and abidding by) some better eating habits.

The glueten free part is for my older son who was dx'd with Aspergers at age 5. He's always has gastro problems, so I thought this would be the thing to try. Plus I have also heard of positive results with it.

My concern is that I'm no cook with regular food, I don't how or where to begin with glueten free cooking and eating. I think that I could easily find the ingredients and plenty of recipes. What I don't know is how I will get a child who eats mostly top ramen, mac and cheese, cheddar cheese, bacon and cereal to switch from his faves and include some produce in there which he eats absolutely zero of now.

He has alot of sensory issues when it comes to eating. Of course texture, smell all the usual stuff and he doesn't like to hear people chew. Not that we're a bunch of jaw slappers when it comes to chewing, but in addition to all else he has hypersensative hearing.

I know that such a change over will be tremendous. I couldn't do it if I were to continue working, so I think now is the perfect time. Does anyone have any hints, suggestions, words of encouragement???????

Tayana, did you ever start the diet? If so, how is working out?
Masonjar how long did it take for you all to get used to the glueten free? I know you said it was flabbergasting at first. Yikes!

Thanks all!

Good Evening!

My name is actually Helen not platypus, that's my son My son has been on a gluten & dairy free diet for about 4-5 months. In addition to that I also try to give him foods with no artificial flavors, colors, and preservatives. That part is kind of easy because the food I get for him is mainly from a health food store so it doesn't have all that junk in it anyway. My son is 10 years old been diagnosed with Aspergers for over a year. Our main issues were aggression, irritability, not being compliant about anything, he just seemed on edge about everything. We had been going to a psychologist who told us he needed to get on medication and then we could start working on his issues, without the meds she said that he wouldn't be able to settle down down enough to take in the help we were trying to give him. I was on the verge of starting medication, I had gotten the prescription filled, had it at home and everything but my mind kept going back to the gfcf (gluten free casein free) diet. I researched it some more and decided for us that would be an alternative route to medication.

I'm not going to lie, it is very expensive. Especially to get started. Once you have the basics though it shouldn't be as bad. I got cookbooks and went to the gfcfdiet website, I dedicated myself to it 100%. Luckily my son went along with it and didn't fight me about it. Basically I have found that there are substitutes for everything except a few things (pizza being our main one)

We went to a naturopathic doctor who did a variety of tests on my son. we found out that yes he definitely has gastro problems and he had some issues with his adrenal glands. My son's bowel movements were very up and down. Diahrrea one day constipation the next. We also did a test to see what foods and other things he was intolerant to. These are not actual food allergies, its more that there body is intolerant to a particular food and can manifest itself in ways one being behavior problems. We started his diet before the testing and the testing just backed up what we already were suspicious of, that he was intolerant to cow's milk and gluten among other things. Again not going to lie, the tests were expensive but worth it for us.

We have seen a complete turn around in his behavior. He doesn't seem on edge anymore, he's very compliant, not as aggressive with classmates or with family members. All my family members see a complete change in him and he's doing so much better in school this year than last year. He still has some moments of anger etc. he's only human but nothing like before.

Now there are moments when he complains about the diet and says he wants other foods, candy etc. but 90% of the time he eats everything I give him, very compliant about it. There have also been times that I have let him "cheat" and have something he shouldn't and there have been times that I have found out he ate something he shouldn't have but those things will happen. I think alot of people believe that even a tiny bit of something that they shouldn't have is bad and you should never cheat but like I said those things happen.

An example: last week I noticed that he seemed to be losing his temper quicker than normal and I was wondering what was going on with him. A few days later I talked to his resource teacher and found out she and his main teacher had been giving him candy and gum as rewards for doing his work. Candy and gum that he normally wouldn't eat. Right after that he came down with really bad diahrrea. Coincidence? I personally don't think so. I'm telling you: what kids put in there bodies can affect behavior!! !!

Here are some examples of what my son eats:

Breakfast:(everything is gluten and casein free) bagel with butter, bagel with cinnamon sugar, bagel with peanut butter, cereal with rice milk, pancakes, waffles, bacon with fried egg and ketchup, banana, apple

Lunch & Dinner: corndog, hotdog, chicken, rice, rice with soy sauce, rice with butter, deli meat (ham, turkey, or chicken), any vegetable, any fruit, french fries, hash browns, spaghetti, goat cheese, tomato soup, tacos,

I am running out of time, I have to get to work so I know I'm leaving alot out but pm me with any questions, I am Helen36 on wrong planet.

we tried the GFCF diet for 2 weeks, and the only one it made a difference for was me......caused severe agitation with hubby ( who's aspie) and Son because they couldn't eat the foods they wanted to. no reasoning with them.

I have thought about trying it, but my son is seeing a pediatric GI already and his diet is so limited that the doc recommends against it at this time only because we are trying really really hard to get fiber into him, and changing the diet would just make an already hard thing harder. Still may try it though when we get his poop problems straigtened out. Basically since he was four years old he would hold and hold and hold his poop until he could hold no longer! and of course had accidents. But through a year or more of doing this he has stretched out his colon so much that he hardly feels when he has to go. Thankfully we are doing a little bit better now, but he has to take Miralax everyday with the increased fiber.

Hi chillywilly1030,
I haven't checked this forum for the past couple days. My apologies for my delayed response.

Pasta is actually an easy one to replace. Rice pasta is delicious. One brand in particular, Tinkyada, cooks up nice and firm. If you're not going casein-free also, you can order just the cheese packets from Annie's web site (http://www.annies.com/products/cheese_p ... heddar.htm). Annie's mac & cheese was my son's favorite (and it is damn good ). Use those cheese packets with rice pasta and voila -- gluten-free mac & cheese. Annie's does make a GF mac & cheese, but the rice pasta they use gets a bit mushy; you could give it a try. We're also casein-free, so we found a soy cheese that doesn't have casein, melt it in some rice milk, add some ghee, some arrowroot, a bit of salt, and it's actually pretty darn good. Serve it up with rice pasta and you have GFCF mac & cheese.

There are some delicious GF cereals out there. Nature's Path has many (http://www.naturespath.com/index.php/pl ... liac_diets), as do others. Read labels carefully on cereals: barley also has gluten, as does spelt. There is most likely GF top ramen also. It would be very handy if you had access to a good health food store. Bacon is no big deal -- it's just protein, although you might look for some that is free of nitrites/nitrates.

As for getting used to the diet -- we went cold turkey, and it was, as I said, flabbergasting at first. It probably took three to four weeks to really get into the swing of it. The real challenge is replacing bread (we're also going yeast-free). There are some good GF bread mixes out there, especially from Bob's Red Mill (he has a huge variety of GF flours, also), but I wasn't crazy about the texture. So I looked online for GF bread recipes, tried them, replaced some flours with other flours, and got some delicious results. Although you can also get some very good rice breads in health food stores, usually in the freezer section.

I could probably go on all night. Feel free to send me a message if you have questions, or just post again here. All I know is that my son had some nasty gastro issues, and eliminating gluten cleared it up. Good luck!

Although butter and goat cheese have casein (????).

casein is not actually what my son is intolerant to, that's what the results from testing showed. I questioned the doctor about this also and he called the lab and they said he was not intolerant to casein. I shouldn't have said "casein" free, sorry about the confusion.

Thanks for the responses. It's encouraging to know that others are taking that bold step to just try it, whether it works out great or not. Ster, I know my kids will give me the same reaction as your son and husband. I'm thinking that the key will be for me to put my foot down and not bring it back up.Follow through has never been my gift.
Jaleb, good luck with gastric issues. It's still a huge issue with my son too (huge being the operative word there). He started out the same as your little one, holding and holding for days, notw at 12 years old, he will stil just go every other day or every two days, but at least the enemas and battles are over.
Masonjar, thanks for the informative response. GF doesn't sound as restrictive as I thought it might be. I live in WV and the stores are just now catching (at least my area) on to some of the more healthy lines of food products. I'll have to travel a bit to get what I would need, but that will be okay. Plus Annies is on the shelves here and that will help.

I thought I saw some links for the good GF web sites, but I can't seem to locate them. Or maybe I'm looking for too much hand holding instructions for the cross over
Any suggestions there?

Thanks again!
Great day all!! !