Anyone have experience Gluten free diets and autism?

[Nik's Mom]

Hi all,

I've been trying to implement a gluten free diet for our family because I've heard that there are benefits with autistic children. My sons can be picky eaters and some of the glutin free things they refused to eat (the bread for example).

Do any of you have experience with this diet? Did you see any benefits? How did you get your kids to eat some of the foods if they didn't like it?

Thanks!
Sherri

 

[ecki]

We did the Gluten free diet for Kayla who is autistic. We originally did it because she always had very soft BMs, so we were eliminating foods to see what would help. She finally had firm BMs after switching to a gluten free and lactose free diet. We've been doing it for about a year.

However, we're starting to wean her off it. Honestly, we just can't afford it. She is also a very picky eater -- one of those "beige food" kids. So ordering special baking mix for her waffles, pasta, cookies and pretzels was costing us around $100 extra a month. With gas prices what they are, we're trying to see if we can take her off gluten free. After all, there's a HUGE difference in cost between a $1.00 box of regular pasta and a $6.99 bag of gluten free!

As far as cognitive/communication/behavioral aspects, we didn't see much change. There were some gains in development, but I don't know if we can chalk that up to the diet or just her development in general. We've been weaning her off the diet for about a month and are still seeing advances.

Other people have had success, though. It's worth a try and compared to a lot of other things, not terribly expensive.

 

[PotteryGal]

Hello - I've been lurking for a little while and finally signed up today.
My DS who is six was diagnosed PDD-NOS when he was three, and while he has made tremendous gains with all his educational support, we are considering this diet as well. His bowels are extremely variable - had a bad moment the other day, and when I asked him if his stomach hurt, I could swear he said 'always' , he usually doesn't act like it bothers him, but I felt terrible - like there was some sign I missed. So I think that once he is out of school for the summer holidays and we return from our trip to WDW in two weeks, we will begin to consider implementing this diet, at least for the summer, and see what happens.

 

[Figment1964]

One thing that worked for us was to have our son take enzymes instead of being on the GFCF diet. We tried the diet for over a year and saw some okay results but he sneaks food at night. Since the diet needs to be adhered to 100% it was more difficult than we could maintain.

I found a book that talked about taking enzymes with meals and we did that for a time, too. The book I found was: Enzymes for Autism and other Neurological Conditions: A Practical Guide by Karen L. DeFelice.

 

[Nik's Mom]

That book sounds interesting. I will have to check it out. How do you give the enzymes? Is it a powder?

Thanks for all of your comments, everyone. It is helpful. You are right. This diet is very expensive! I want to make sure that there are benefits to it though.

 

[Figment1964]

That book sounds interesting. I will have to check it out. How do you give the enzymes? Is it a powder?

We found both capsules and powder through Houston Nutraceuticals (www.houstonni.com). For awhile I was making my own capsules out of the powder...not fun, but that was before they came out with capsules.

Check out the website and the book, they both were super helpful.

This thread has made me think about considering it again, especially since we've added another child to the family with a myriad of issues including being on the autism spectrum.

 

[BeckyScott]

We do the Houston's enzymes too.

Justin is currently gluten-free, casein-free, and no eggs, onion, blueberry, apple, pineapple, or cocoa. I think that's it.

We started him gfcf but then had allergy testing done and the rest were food allergies. He also did come back medium-allergic to wheat and pretty much all dairy.

To be honest, I haven't seen much improvement in the autism, but his overall health, yes. We're less than a year into it. He had a big yeast overgrowth and we are still struggling with that- we had it knocked down but then it wants to come back, etc etc.

There is a yahoo group called gfcfkids that is very helpful and very active.

It's not cheap. But it seems anymore "regular" food has gotten so expensive that it's not that much of a difference. Like ecki, we spend about $20/wk extra on his special food, with the occassional $50 amazon order. That's without supplements. A lot of the foods you can buy at the regular grocery store.

 

[Eeyores Butterfly]

I'm heading out for a bit, so I'm posting this without reading all of the responses.

I am currently earning my master's in special ed, and frequently substitute in the EIBI (Early Intensive Behavioral Intervention) preschool autism room in our school district. (Sidenote: EIBI is amazing! By kindergarten many of our kids are indistinguishable from their neurotypical peers!)

Anywho, we have one little girl in the room who is on a gulten free diet. I did not know her beforehand, but I am told it is night and day. I did a research project on autism, and some of the research I found looks at glucosamine receptors in the brain. Their brains simply don't process it the same way. When I was undergoing the training to sub in the EIBI room (done by people from the Thompson Center at MU), they told us how many kids with autism cannot process artificial ingredients (especialy Red Dye #4) and cannot process gluten. The way she explained it, it is like they are getting high. When the child is stimming with an object, it's like they are seeing sparkles. Not all kids will be affected by this diet, but for many it can work wonders. Just be forewarned: it's expensive, and can be difficult.

 

[Eeyores Butterfly]

I should add that my first internship with preschool special ed included a two year old with autistic tendencies (too young to be officially diagnosed, but he definitely had autism). He had serious aggression/behavioral issues. He had a gluten free diet and most of his aggression went away. We did experience aggression at mealtimes because he wanted to eat what the other kids did, but the diet helped him so much. I will say that this kid was a crack baby who was later adopted by another family, and there were other physical issues like a jaw deformity going on there, so his experience may not be the same as yours.

 

[BeckyScott]

My sons can be picky eaters and some of the glutin free things they refused to eat (the bread for example).

Do any of you have experience with this diet? Did you see any benefits? How did you get your kids to eat some of the foods if they didn't like it?

My son is still basically on the "all-beige" diet, I've just subbed everything.

As far as the bread goes, you might need to try several brands to find one they'll eat. If they'll do bread machine bread, the Bob's Red Mill mix is almost indistinguishable, in my opinion it's the one that comes the closest to being regular bread of all we've tried. We sometimes buy the little loaves of Ener-G at the health food store.

Rice pasta, rice bread. Rice or soy cheese. Potato chips and corn chips there are acceptable mainstream brands. Rice milk (almond milk is really tasty but he's allergic to nuts). Rice cereals. I am amazed at what they do with rice.

Some of the kids can't tolerate corn or soy either. So then you're really like "what's left to eat?"

Our biggest hurdles: Milk. He doesn't like rice milk so pretty much he's quit drinking it altogether. Which is not a big deal since he wouldn't have been getting any of the calcium or other vitamins anyway. That's part of the reason he gets supplements. Soy milk would work but I think we have a soy problem too, so I don't give it to him very often.

Cheese. He was resistive at first. But. What I did (and I've read of other parents doing this) is that I just didn't buy any cheese for a week or so. ("Whoops Mommy forgot to buy cheese! I'll get some next time.") Then when I did buy the rice stuff, he was so happy to get cheese and his taste buds had forgotten a bit, he ate it no problem. That's how I did it, and it did work. Did the same thing with the bread.

One thing I noticed is that my son likes things to look the same as the old food. So for example, the cheese. He wasn't overly enthusiastic, but then I found sliced "American cheese" in the individual wrappers. They "look" like regular Kraft slices. They taste awful but they looked right, so he ate them. Or they sell bags of shredded cheese. It "looks" the same as the real stuff. If I'm not careful now, he'll made melted cheese sandwiches (using the microwave) when I'm not watching and eat the whole package of cheese and most of the little loaf of bread-- which uh, is about $8 worth of food.

The cereal and chips, I just switched out to different brands. EnviroKids makes good "kid's" cereals that look like mainstream brands. And my son didn't care if he got Stax or Doritos, so long as he had some chips to eat.

The pasta he'll eat the DeBoles that they sell at Wal-Mart, but IIRC ecki's daughter only eats the Tinkinyada. You'd have to do some experimenting. Some of them are closer to "real" than others.

edited to add: if you go to gfcfdiet.com, to the bottom to the "directory", there is a massive list of food there. Cruise thru it, there are really tons of options.

 

[PotteryGal]

Our biggest hurdles: Milk. He doesn't like rice milk so pretty much he's quit drinking it altogether. Which is not a big deal since he wouldn't have been getting any of the calcium or other vitamins anyway. That's part of the reason he gets supplements. Soy milk would work but I think we have a soy problem too, so I don't give it to him very often.

Cheese. He was resistive at first. But. What I did (and I've read of other parents doing this) is that I just didn't buy any cheese for a week or so. ("Whoops Mommy forgot to buy cheese! I'll get some next time.") Then when I did buy the rice stuff, he was so happy to get cheese and his taste buds had forgotten a bit, he ate it no problem. That's how I did it, and it did work. Did the same thing with the bread.

One thing I noticed is that my son likes things to look the same as the old food. So for example, the cheese. He wasn't overly enthusiastic, but then I found sliced "American cheese" in the individual wrappers. They "look" like regular Kraft slices. They taste awful but they looked right, so he ate them. Or they sell bags of shredded cheese. It "looks" the same as the real stuff. If I'm not careful now, he'll made melted cheese sandwiches (using the microwave) when I'm not watching and eat the whole package of cheese and most of the little loaf of bread-- which uh, is about $8 worth of food.



edited to add: if you go to gfcfdiet.com, to the bottom to the "directory", there is a massive list of food there. Cruise thru it, there are really tons of options.

The cheese has been our biggest obstacle to beginning the diet...we tried to sub Toffuti american 'cheese' slices, and believe me, my son tasted the difference. I think we would have to completely eliminate all cheese in our house to be remotely successful.

 

[mechurchlady]

I am allergic, sensitive and celiac, yep, all three. That means NO wheat, avoid if at all possible peneciillin, avoid if at all possible soy and eggs, and no dairy and chocolate. I indulge in cheese, a sip of canned milk, or a bit of ice cream.

It your kid is not allergic or otherwise medically required to be on a special diet then go ahead and have the glass of milk or morning toast. In the perfect world kids set down to a meal and eat everything and drink everything. No whining or complaining, no balking, or refusals or well fed dogs but just happy kids eating okra, liver, sushi, tofu, veggie burgers and salads. They would take dessert if offer but would not demand it. No whining in the store for a brand of food either. My friend's mother made everyone sandwiches but his kid kept saying "salad" as he did not want mayo or lettuce which is salad to him.

Since this is not the perfect world full of Stepford wives and childen then it is better to get rid of much GFCF food but be willing to use the old stuff if no alternative can be found. It is better for a kid to drink a glass of milk a day than have that kid drinking water and not getting its nutrients. I limit myself with that bag of caramel corn because of dairy in it but it is a nice treat so I rather have the treat than be hungry all day.

Some kids cannot or will not tell parents that they are ill from food. I do believe that a dietary change can help autistic kids.

 

[BeckyScott]

The cheese has been our biggest obstacle to beginning the diet...we tried to sub Toffuti american 'cheese' slices, and believe me, my son tasted the difference. I think we would have to completely eliminate all cheese in our house to be remotely successful.

I have noticed with Justin, he will only eat the cheese when it's melted. Maybe it tastes better then? I doubt it. But he doesn't ever eat it just plain, it's always nachos or melted cheese sandwiches. We have some soy parmesan sprinkles to use on pasta that are really pretty good, even I use those.

One thing that did help us- but he's older. He can read and can figure out a chart. So when we got the IgG and IgE results back, I showed them to him, and explained that anything with a big line was an allergy. He read it, and he really did seem to "get it". That helped me out HUGE. It's gotten to the point now where he has *his* cheese and we have *our* cheese and he never even asks for the other stuff. I think it must be that autistic Vulcan Logic.

 

[Eeyores Butterfly]

Becky: the melted cheese thing could be a sensory issue. As I'm sure you know many kids with autism are hypersensitive to texture, and it could be that he just likes hte texture of the cheese better when it is melted. (I'm that way, I love Taco Bell's new cheese roll ups because the melted cheese is delicious!)

 

[BeckyScott]

It could be, but probably not with him. (good suggestion though!) He is under-sensitive and global hypotonia. It's actually worked in our favor sometimes because of the eczema, he doesn't notice the itch, some days he was rashed up so bad I know it would drive almost anyone nuts, and he was totally unaware of it. Of course, when he does scratch it, he won't figure out to stop.

In retrospect, I can look back and he always preferred harder textured food. Nothing mushy, with the one exception of mashed potatos and I always make them "sturdy". We had fits with baby food, he didn't like it, at the time of course I had no idea why, but once he got to the point of self-feeding with Cheerios, he was fine. And I guess that contributes to his speech problems because he can't figure out tongue placement.

Gosh, that rice cheese though, when it melts, it isn't goopy, it's more like orange soup. Totally gross, really. He'll pull the sandwich apart and just lick the orange goop.

 

[mechurchlady]

I am on a no cheese diet, allergies or sensitivities, whatever. Melted cheese is like totally different from hard cheese. I cannot understand how people can get a drink, bread and cheese for lunch. Quesadillas I would kill for and last night it was cheese burgers. I eat cheese in salads but rarely otherwise unless it is hot and ooey gooey. I love alice springs chicken that has bacon mushrooms and lots of melted cheese. I have even at breakfast took a piece of mom's cheese and dropped it in the pan of bacon to melt.

My name is Laurie and I am addicted to melted cheese.

 

[Luv Bunnies]

I am happy to share my observations of kids on the GF/CF diet. Remember though, that these are strictly my observations and everyone's not going to agree with them.

I am finishing my 8th year as a teaching assistant in a special ed preschool classroom. We have kids with mild to severe disabilities (speech language delayed to severely autistic). Several kids have come through our program who were on the GF/CF diet and I didn't see it help any one of those kids. Each of the parents told us how difficult and expensive it was to find and prepare foods their kids would eat. Some of the kids were visibly upset by not being able to eat what the other kids were eating. We currently have a GF/CF kid who has to be put at his very own table for lunch so he isn't tempted by other kids' food.

In terms of behavior changes, we never saw any. I was always curious about the effectiveness of the diet so I ask the parents how it's going. We never had a parent who said their child's behavior improved or their rate of progress increased since starting the diet. Every single parent (except our current child) ended up abandoning the diet after several months. The child we have currently is one of the most challenging we've ever had in terms of behavior. His parents are thinking of stopping the diet after two years because they aren't seeing any changes.

The professionals who work in our program (speech therapist, OT, psychologist) have all said that there's no concrete scientific proof that the GF/CF diet has any affect on behavior. There is one exception: If the child is allergic to wheat or milk, the diet can help them to feel better and, thus, they respond better to their various therapies. This would be true of any person (not just those with autism).

As I said before, these are just my personal observations and my personal opinion. Many people may disagree which is absolutely their right. However, I thought it was important to present all sides of the issue for the consideration of those who are interested.

 

[ireland_nicole]

IMHO, it depends on whether each child is gluten/cassein sensitive or not. We tried it, it didn't seem to make a difference, now we supplement and use meds for comorbid stuff. Other friends have seen a marked improvement: i.e., one friend's child was non verbal, and improved while on GFCF diet. After a year, they tried weaning him off, but he regressed. They put him back on, and it began to improve again. Needless to say, they swear by it.

As our Neuro told us, it won't make a difference to everyone, but if you want to see if it will, you have to try it.

Good luck