gluten/dairy free diet for daughter, anyone else try this?

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Okay. My 5 year old daughter has been recently diagnosed as Asperger's Disorder and ADHD, inattentive type. I'm weaning her into a gluten and dairy free diet and I'm getting mixed reviews about it. I'm also an Aspie, so I'm thinking of joining her to see what kind of results I get. My biggest issue as an adult is chronic anxiety over most things that require social interaction. I know I will always have those issues with being awkward, but I wonder if it may help in other areas. Also, I'm hopeful that it will help my daughter gain some focus in her school work and have less frustration when things don't go her way. Fewer meltdowns. Has anyone else tried this, and how did it work for you? It's either try this, or medicate her. I'm not ready to try the meds on her.

I haven't tried it yet myself, but another family that know has done this with remarkable results. The daughter is now 13, and is on the spectrum. Before they got started they consulted with someone who could do extensive testing to make sure that she had sensitivities to gluten and preservatives. Her mother recommended that the testing would be vital since the transition and then commitment to this diet can be difficult. It also took a few months to really notice a difference in her behavior. (she acted out a lot)

Now that she is older, the daughter can keep track of her own intake and knows what to do for herself if she mistakenly eats something that she's sensitive to. I guess it was harder to keep track of her eating when she was younger.

I have been considering at least reducing the amount of gluten that my kids eat. We've given up dairy for the most part. Eliminating preservatives produced almost immediate results. I know this because when we give in and let them have junky foods, we regret it.

Please post your progress!

I've got AS and ADD too, and I don't take the meds for either. I tried a gluten/dairy free diet, and I was miserable. (Potatoe based pancakes are the wrost.) AS and ADD symptoms tend to lessen over time anyway, regardless of special diets. I have cut out junk food, but that's something everyone should do.

-Just my opinion.
I hope you find what works with you.

I don't know where you got that notion, but if that were true, there would be no adults with AS or HFA and there are plenty right here on WP. My autistic traits have never lessened or disappeared at any point in my life, though I've gone through periods where I masked them better than others. You don't outgrow autism and it can't be cured no matter how much effort you put into hiding it. The very idea that a diet can make any difference whatsoever is just wishful thinking. You can't cure a brain disorder by giving up milk and cheese.

I wish that we had tried some of these diets when DS was little and I had more control. Now that he's almost 11, we need buy in from him - and we don't have it! Now, we need to wait until he is willing to try a change in diet. Even if I limit what we have in the house, DS wil refuse to eat anything he doesn't want and will go hungry and eventually meltdown.

I'm gluten-free with limited/no dairy consumption and have seen zero improvement in anxiety, depression, or anything related to autism except for otherwise feeling awful if I eat gluten. I maintain if you do not have any stomach or gastro issues, you shouldn't try the diet.

From what I can tell it would seem the people who benefit from such a diet for autism are people who also have no autism in their family history. I believe there are children who develop autism-like symptoms from severe allergies or other environmental causes which accounts for the miracle cures... and for those who do have such stomach problems feeling better and more functional after going on such a diet.

"[...]CARS [childhood autism rating scale] scores among children with an initial DQ or IQ 0.70 showed a significant decrement with time[...]"
-Modeling Clinical Outcome of Children With Autistic Spectrum Disorders, James Coplan, MD, Abbas F. Jawad, PhD
http://pediatrics.aappublications.org/c ... /116/1/117

I appreciate all food for thought. Autism, especially Asperger's runs in my family and what I know for a fact that does help is exercise and eating healthy. I don't eat a lot of garbage and I try my best to jog or do pilates at home when I can. I figure if I cut out the crap with artificial sweeteners and 'clean' up our diet that a gluten/dairy restricted diet may help. And the main reason being that since choices become limited, it's easier to include more of the good stuff such as fruit and vegees and organicaly grown foods. I pack my daughter's lunches with food I know I can trust, I feed her breakfast and so I'm comfortable with what she's getting. I have seen cookies, candy and junk food at work in my kids. Anyone who says that sugar or artificial food colorings and flavors don't make your kid act out, have never seen mine after a junk food binge. What I can say for certain is that today, after a week (and I know it takes longer, closer to a month perhaps to see full results if any are to be had) she had a great evening! We worked on some math problems and word recognition and she focused nicely, longer than usual. She was also chipper, giggly, helpful and suggly. She went so far as to get her little sister a snack out of the fridge! Now, she could have just had a random 'good' day, but I seriously doubt it will hurt anything. And if it should happen to work in some reguards, then starting so early will make it easier on her throught life. Plus, upon shopping, I found that Bisquick makes a gluten free mix, there are some great gluten free pastas and bread mixes at the local grocery stores. I was pleasantly suprised at the selection, but not all that pleased with the added expense. But if an extra $30 in groceries a week gives her a better chance of doing well in school, I'll make it work. As far as the social aspect, she will always be like me. As so many of my long time friends say, "Strange, yet somehow appealing." She will be unique and special.

As I understand it, this diet will only help if you actually have a specific condition that requires the diet. . Making large life decisions based on opinion polls or other peoples anecdotal evidence is silly and can quite often be harmful.

Find a good doctor, be careful with this, because a surprising number of doctors know next to nothing about autism.

Do research on the web, but trust pretty much none of it., it will take a long time before you will be able to distinguish the good information from the bad. To make it worse the vast majority of info on the web about autism is quackery.

You might think getting info from other parents of autistics will help, and sometimes it will but there is a saying and it does apply "when you have met one person with autism you have met one person with autism". in addition to this there is confirmation bias, when someone puts a lot of effort into something, a diet for instance, they want it to work so bad sometimes, that they will believe it does no matter the results.

Check with a pediatrician.

If you search this forum, you will find some really good threads on when and when not to consider this diet or variations there of. The posters here who have done the most research on diet issues are PenguinMom and Ouinon. Look for their information.

Otherwise, a couple of general comments:

Most of our families have found that they do NOT need to eliminate both gluten and cassien to see some benefit (assuming there is any benefit to be had in diet changes for that family at all). GFCF is, quite literally, the prescription for a certain disease, Celiac, which it is unlikely that your child has. However, a good number of people are sensitive to various foods, and eliminating them will make the sensitive person feel better and, as a result of feeling better, behave better. Some of the food sensitivities our families have found, in the approximate order they seem to occur (purely subjective, that order, based on my history reading this forum):

1) Gluten. Most commonly manifests as fuzzy thinking and / or digestion issues.
2) Cassien and / or milk products in general. Most commonly manifests as digestion issues.
3) Soy. This is the one that runs in my family, and that we have eliminated with our son. If you are going GFCF you are likely to be increasing soy intake, which can be a problem, since many people actually have issues with it. Hence, it is really important to be aware of that this is on the food sensitivity list. Seems to manifest as fuzzy thinking and / or mood problems.
4) Food colorings and certain artificial ingredients. Seems to manifest as mood problems.
5) Eggs.

Changing diet will not cure AS, but it can make your child healthier, and healthier children function better. Pretty simple, really. Just ... make sure that the changes you make are actually making your unique child healthier.

My mom had me on a gluten + dairy free diet for awhile when I was young. I can't say their were any improvements, and on top of that the food didn't taste very good either.

My daughter was lactose intolerant as an infant and seemed to come out of it after about a year. Her pediatritian didn't see a problem with trying this route for a while. She is quite frequently spaced out and unfocused with dark circles under her eyes even with good sleep. The medical community in this one horse town is limited and we had to drive 45 minutes to find an evaluator in the first place. They just want to put her on meds, but I'd like to try this first and see if there are any results to be had.

for our family, we have chosen not to restrict diet for the simple fact that our son doesnt show any real digestive issues. he is also an extremely picky eater, and i think forcing such a drastic change to his diet would be very traumatizing for him, and us. he has sensory issues with textures that impact his food choices, so altering his diet is nearly impossible anyway (he gags at the sight of certain textures).

we do see similar things with lack of focus and a low frustration threshold. we address these things by trying to discover the triggers for his behavior, and teaching him to regulate his own emotions and behavior. for instance, he tends to lose verbal ability when frustrated or upset and reverts to screaming, crying, throwing himself on the floor, etc. we use verbal cues to remind him to use words to express his feelings and try to help him describe his emotions. this is showing to be very successful, and last week we were very happy, and honestly astonished, to hear him get very upset with his brother, and actually tell him so with words.

one caution i would make is to tailor what you do to what your child needs and is able to tolerate. the gf/cf diet is a very drastic change, just be sure that any improvement you see, if there is any, is worth the tradeoff. this is especially important with autistic children who are often very resistant to change. changing things up can be very difficult for them, the benefits need to be big to offset that.

fortuately, she is good about changing up foods and is not too picky. Andy really, the diet hasn't changed so much as to be a disruption. She likes the chocolate soy milk and loves fruit and vegees. I found some great GF replacements for noodles and such. So far, it hasn't been too hard an adjustment. We will allow some gluten in small amounts once in a while, and if we see no change then we'll go back. We do focus on giving her tools to handle frustration, but the inability to stay focused is concerning. That's really where I'd like to see some change for her sake. Thank you to all of you for your imput and advice. Really, it is all taken into consideration, even if I chose to follow my own way.

For helping her with focus, take a strong look at the environmental conditions. Most of our kids have sensory issues, and if you think about how hard it is for us to focus if, say, we're in a freezing room with a really loud drill outside, you get a hint at what life can be life for an AS child. You need to peg the sensory issues.

Also, remember that most AS kids are on their own unique developmental paths. Thus, an AS 5 year old may have an NT 4 year old's developmental ability to focus. Just as you wouldn't assume a toddler should be able to do what a K child can, you can't assume an AS 5 year old can or should be able to do what an NT 5 year old can. Our kids will race ahead in some areas, and lag significantly in others. It is really really important to allow them to develop on their pace, and not push them to use skills they simply have not yet had time to grow into. You will see that difference a lot in the school years with focus skills, the ability to sit still for certain periods, organizational skills, independence skills, and so on. None of these should cause you great concern; they usually come, just in their own time, and your child needs the world to recognize and accept that.

Do be watch for side effects on the soy since, as I noted, it seems to be a common food sensitivity. If there is any history of thyroid problems in the family then be super extra aware - I wouldn't give soy milk at all if there is. I don't know the specific connection, but my husband has done a ton of research on soy and found some really surprising things.

We are on the Failsafe Diet, which is basically just as you said-eating very healthy-plus a few more things eliminated. It is also called the Elimination Diet. My daughter does do better on it than off, and if she slips and eats something you can DEFINITELY tell the difference. She is itchy all over, irritable, can't go to sleep, whiny, with a much shorter fuse. While the diet hasn't eliminated her "autistic" characteristics such as anxiety, meltdowns (although they are far less frequent but that could be due to her age) and stims, it does help quite a bit. She also has pretty bad eczema and I have never found anything that helps with that (not even the steroid creams). She also has the eye "shiners" (dark red circles around her eyes) which didn't go away on the diet. We have eliminated Gluten and didn't see results (so we eat gluten now as long as it is Failsafe). Our next step may be Casein removal to try to help the eczema.

Anyway, I just wanted to let you know that dietary changes made positive improvements for us-but no more than I believe you'd see with just about every kid out there. At my nephews birthday party I watched as the sugar/food dyes hit the bloodstreams of the guests and if you pay attention you can definitely see how bad these things are for kids-they just became insanely hyper.

All of our food is free of chemicals and I believe my daughter is more sensitive to chemicals (whether that's due to a lack of ability to process the chemicals? or some other reason?). Even with pharmaceuticals, she is usually one of those that has a "rare" side effect.