All the 'special diets'

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Hi

My daughter is just under 3 and it is highly suspected she has asperger's just waiting on the diagnosis.

My question is about all the specialty diets that may reduce the symptoms of ASD. I havdn't noticed any sensitivites to certain foods, actually all in all Britlynn eats quite well, isn't any more picky than the average 3 year old and doesn't have any noticable gastro-intestinal problems (although she would never be able to verbalize something like "my tummy hurts etc").

Given our circumstances I'm awfully skeptical about the 'gluten free' or other specialty diets, but I feel like I would be a bad mom if I don't at least research and try them. So I'm wondering what feedback everyone out there has had. Have you tried any diets that have been successful? If so, how do you know that it's the diet that is successful and not any of the other interventions (behavioral, speech therapy etc) as my daughter is showing big strides right now with her developement without any changes to her diet. Any thoughts would be appreciated.

My daughter isn't on any special diet and never has been. I'm very wary of those special diets since they look like they really restrict a wide variety of perfectly healthy foods (perfectly healthy for anybody with no intestinal issues) and have no effect. What actually helps? Teaching. I think the actual intervention that helps an autistic child is educational. Autistic children need more education than typically developing children since they don't easily learn many of the things that typically developing children do. My daughter did ultimately learn to talk and talk quite well. But it was speech therapy that taught her. However, I suppose if I'd had her on a special diet I would have seen a (false) correlation between the things she learned and her diet. Since she was never on a special diet, I attribute her gains to natural though atypical development and to education.

If your daughter is showing big strides with no special diet, stay the course. She'll eat healthier food and you can attribute her gains to natural development and educational therapies.

My experience is NOT typical. I suspect for the majority of AS kids diet is not a contributing factor. If you think that your daughter's personality/abilities change in direct relationship to what and/or when she eats then you can look at my blog and read an example of a pretty horrific experience with special diets.

Looking back here are some of the symptoms my daughter was gluten intolerant that I didn't pick up on at the time.
She never had a solid stool.
She frequently had "stomach virus'" and was throwing up a lot as a baby.
She had bright red cheeks all the time.
At the age when her peers were toilet training she frequently defficated on the floor even though she knew what a toilet was and how to use it.
She had a very difficult time sleeping. She could only sleep when being held. The psychologist who had celiac was the one who made me go "duh... she can't sleep 'cause her stomach hurts and she wants to be comforted."
We ate a lot of gluten, and at times I tried cutting out different things, but I didn't know gluten was in things other than wheat. Gluten is also in Miso, Spelt, Malt Vinegar, and some commercial chicken broths, so even when I tried elliminating wheat I still saw symptoms, and didn't have clue what the hell was going on.
It was very very very clear that there were distinct changes in behavior after eating and that behaviors were deffinately worse after certain foods. I cut out all white flour and processed foods by the time she was 10 months old thinking she was getting a sugar rush from the glycemic index. I still didn't have a clue what gluten was.

After being run in circles by some holllistic doctors I eventually worked with a team of doctors at both Columbia University Medical Center and Goryeb Children's hospital in New Jersey

Good luck, if you don't have a reason to beleive food causes things, don't feel bad about not trying special diets. If you do try them, go with a team of experts from mainstream hospitals.

From all I've read over the years, the rate of intolerances in AS kids is probably about the same as it is in the general population, just that with an AS child other things may have interfered with correct diagnosis, or the problems resulting may have been more severe. The numbers I've heard are anywhere from 10 to 30%, and I'm moving down towards the 10% as for what I believe is most accurate.

Here's the thing. IF you child has food sensitivities, the odds that the celiac diet, GFCF, is the "right" one are actually relatively small. When AS adults here started experimenting on themselves, those that found diet changes helped them feel better tended to find it with EITHER gluten or cassien, and rarely both. And that distiction is important because the 3rd most common food sensitivity I'm hearing about - and it is all anecdotal, I know that - is soy. My son, for example, is senstive to soy. If we had gone GFCF, guess what he would be consuming MORE of? Soy. Totally wrong. But if we go GF someday as an experiment - and we have considered it, he is old enough to decide for himself - we won't have to replace nutrients with another common allergen.

Anecdotally, I would say that GF is more common than any other factor. But, still, we're talking a fraction of those on the spectrum. It is far from a cure all, and far from a miracle, and far from pervasive. In this community you get the benefit of hearing from adults testing upon themselves, and its been a really interesting read the last few years. I would love for that information to disseminate to the general public as well as the GFCF tales have. Yes, the fring medical community seems to have accidentally hit upon something that was affecting some AS kids negatively, but it hasn't split the hairs right yet on the "why" and "how." That is going to have to come from mainstream medicine, and I believe that the types of anecdotes available here point in the right direction.

As others said, most people with an ASD do not seem to have food issues. Those that do generally find an almost immediate benefit to eliminating the food/ingredient in question.

So it's worth trying an elimination diet to see what happens. As DW_a_mom points out, the food in question may not be mllk or gluten, but something like soy. So keep track of what you eliminate from your child's diet, and what your child is getting.

My son is 4.5 and I have never done any special diets. He has PDD-NOS-possible AS. He has always been a good eater and eats a variety of foods. I just didn't want to start messing with that as I was seeing great improvement in his speech and other behaviors just from school and therapy. I have gone back and forth as well wondering if I have done everything I should or could, and I still just keep waiting it out. Our developmental pediatrician told us that those diets are mainly for those who have serious bowel issues, which my son does not. He does have some constipation, but I think some of that stems from him not wanting to go and holding it.
I would say just wait it out a little longer and see how far she comes without the diet change. If you feel she isn't progressing, then maybe try it. You are not a bad mom for not trying it!!
Good luck

I think that you should wait until she's a little older, and than let her make the decision, whether she wants to go on any special diets, or not. What if it turns out that she doesn't like some of the foods that are required for a gluten free/dairy free diet? Than she might not be eating anything at all.

No signs of food intolerance? Don't worry about diets. Your daughter is lucky not to have taste/texture sensitivity; that problem makes many of us picky eaters, and can create problems ranging from being a little skinny to having serious nutritional deficiencies.

Your daughter doesn't have digestive problems--and if it ain't broke, don't fix it! Like any little girl, she should benefit most from a balanced diet, made up mostly of non-processed foods, with a lot of variety. Actually, that's probably the best diet out there, better than any "special diet" you can possibly think of--just eat a large variety, and you're bound to get the nutrients you need from some source or another. A lot of those special diets eliminate important sources of nutrients and have to be re-balanced carefully to gain back even some of those benefits; and even then, they are only better than a normal diet because the person who's on the diet is sensitive to whatever's been removed from it. If he's not sensitive, the special diet can only hurt him by decreasing variety.

I mean, I can see getting rid of some of the ultra-processed non-foods, or giving her a few more fruits and veggies to snack on; but you'd do that for any kid. Autism's got nothing to do with that.

Any claims that a certain diet will cure autism is bogus.

The children on these diets have to have countless supliments to replace what they are not getting from this diet. The parents have to force their child to take them and in one account, the lady nearly choked her child to death. Unless the child has a real food algery or cealiac diease, the special diets are more harm than good. They don't do anything to "cure" autism. Those claims are just a big fraud.

You must accept your daughter the way that she is, and not try to cure her, through special diets.

There is no reason to put a child on a special diet unless there are genuine allergies and intolerances. I know I'm lactose intolerant so I avoid milk but I haven't noticed any improvement in other symptoms such as obsessiveness or irritability. I just found out that I"m a celiac, though, and I'm in the "withdrawl" stage as I stop eating wheat. It's only been a few days. I won't know how that affects my "behavior" until the withdrawl phase is over. ANY person who is a celiac is likely to have some behavioral symptoms while eating gluten, not just people with an ASD who are also celiacs.

learning more and more everyday. My instincts tell me that it would be stupid to go making changes to her diet when she eats really well and you've all helped me confirm this. I'm so glad to have this site, thank you

a gluten free or casein free diet is one to undertake if one is allergic or intolerant. Simple blood tests usually tell if the allergies are present; intolerances are more difficult to determine unless under the care of a doctor and doing a strict elimination diet to determine if a certain food causes symptoms.

Let me describe my digestive problems and other issues- does your daughter have any of these? I weighed less than 5 pounds at birth. I was underweight until my 30s and only became slightly "chunky" because I had to take steroids for a month and my appetite went nuts. I have had serious stomach and intestinal problems since my pre-teens. Including times when I literally cannot stand up for the pain. Alternating loose stools and constipation. My tummy is usually bloated; occasionally people have thought that I was pregnant. I have also had an auto-immune disorder, lethargy, joint pain, insomnia, reddish, blotchy skin, bad teeth enamel, and chronic dark blue circles under my eyes. All of these are likely caused by celiac disease.

Yes, there are some behavioral symptoms, because the gluten is only partially broken down in people with celiac disease. The gluten turns into a substance very similar to OPIUM in it's chemical make-up. Most people who are addicted to heroin act a little different, ya know? I'm only 3 days gluten free and I'm having some weird withdrawal symptoms. I've never been on any real drugs, so this is bizarre for me to be going through mild opium withdrawal here.

this is what you're talking about with "gluten allergy." There are very substantial symptoms. If your child doesn't have at least some of them, then why take her off a food that isn't causing problems? What people don't understand with the whole GFCF diet craze is that it was never suggested to cure autism. It was thought that people with Autism and Asperger Syndrome were more likely to have allergies to gluten and casein. This has not been proven; in fact, recent studies suggested that the incidence is not higher in the ASD population at all.

although this thread is 8 months old i feel obliged to say that every post on here is anti-GFCF and is therefore completely wrong.

'perfectly healthy' to someone who doesn't have a problem with the foods. Also, although foods are restricted, there are plenty of other foods to eat and choose from.


if all we did was follow our instincts we'd still believe in witches and that the moon is made of cheese


WRONG. A typical autistic child will have very abnormal levels of vitamins and minerals. These abnormalities do go away on a GFCF diet. Also on the GFCF you're encouraged to take vitamins and minerals in tablet form, which you may not do without the diet.


This is simply a case of awful parenting which you are trying to associate with the GFCF diet. In reality this situation could have happened regardless if the child had been on this particular diet or not. Also I doubt whether this story actually happened as I have a feeling its been exaggerated for dramatic effect.


unfortunately we aren't able test your theory by looking into a parallel universe where your daughter was on a special diet, that technology has yet to be invented yet.


I have never heard this before. A complete generalisation too. In fact I am an AS adult who is experimenting on myself with a diet change and i find that BOTH gluten and casein make a difference. And I think you'll find it's not rare that that is the case.


No, most ASD kids are faddy eaters. Most eat lots of food containing gluten and casein. Some high functioning ones will avoid casein claiming it makes it hard for them to think.
Soy contains a gluten-like protein which is why it has to be avoided on the GFCF diet. So the 'food in question' is not one food but dairy, gluten, soy and oats (which also have a gluten-like protein)


Your developmental pediatrician probably knows nothing at all about autism. Most doctors don't. Constipation is a serious issue if it's chronic. Normal people don't have constipation.
Also, you may think that the constipation is because he's just holding it in, but how can you be sure? Can you read his mind? If you're not certain then wouldn't it be better for him, to try the GFCF diet to see if his no doubt uncomfortable constipation goes away?



Children often thank their parents for making them go GFCF. An autistic child addicted to gluten and dairy with no idea what's going in their world is in no position to decide for themselves whether GFCF is for them.


I really doubt a child would go without food and die of starvation just because they 'don't like' the foods they would have to eat on the GFCF diet. Besides, there's a wide choice of food available on the GFCF diet so chances are there'll be something she'll like.


Why? You don't give a reason at all. In fact you sound faintly religious and religion is another one of my pet peeves.


It is explained in the Sunderland Protocol that autistics are not allergic or intolerant to gluten and casein. They don't have a classic type 1 allergy to it. Instead they problem they have with the food is that too much of it passes through the intestinal wall, undigested.


Well it should have been because it does.

Greyshark, you had me thinking this was a reasonable post until your last sentence. It does not CURE autism. It can make some of the manifestations/co-morbids lessen but it does not cure autism.