Parents question concerning dairy and gluten free diet

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So, I've got my DS on a gluten and dairy free diet since april 2018. He's always loved food up until 3 months ago when you could see him reject foods that he normally would dig into. Slowly he's been narrowing things down to eating almost close to nothing. Extremely frustrating. In a way I can understand why he's not liking the dull gluten free bread and the gross vegan cheese. It's often difficult finding a good substitute for the foods he likes. Eating out is usually a debacle.

When we started the diet I suspect there was a placebo effect involved. He had been touching his head/ears a lot, rolled his eyes and squeezed them shut so often that we started believed he had a tumor. This gradually faded to zero and his weirdest stim (on his back, lifting both hands and legs up and shaking his entire body) also reduced to just about zero. Only does the stimming rarely in bed before sleep now. So at least SOMETHING happened, but who knows what really caused that change.

As we are two parents I'm not alone in taking this decision but I'm the one starting to think it's causing us more trouble than we need at this time. So is there anyone out there who can give me an honest opinion on if they noticed any improvements with going dairy/gluten free? Just want to add that my son don't have ADHD, which I understand is a different story and something that I can buy into regarding food.

The only people that such a diet would help are those who have lactose intolerance and/or celiac disease. Otherwise, you're just wasting your time.

He used to like food, now he doesn't. I don't blame him.

You didn't say why you have put him on this extreme diet.

Thank you for that input. I don't think we have any kind of intolerance on my family side. On my wives side there are some issues that are diffuse. Think they have something called IBS and then some gluten intolerance that her father has.



Yes, that's the easy conclusion to draw, I know . However, he ate a lot of gluten/dairy free dishes without hesitation for a long time, like 8-9 months, without making any kind of faces. I have read that a lot of autistic kids stop eating at age 3 (where he is now) and then grow into it later on. His cousin is 6 and only eats sausages and sandwiches, he's undiagnosed but most likely autistic (I'm more than 99% sure) as he, for example, didn't speak until he was 5 years old and is quite different to other kids. He's doing great on his own though, really special kid. And his father, who is my brother, is the worst eater ever. Two relationships crashed due to him eating more monotone than a little baby

The reason we put him on the diet is because we were desperately looking for answer to why our boy just didn't develop all of a sudden. As a parent to an autistic child you will come across tons of material and there is no doctor in the world who can give you any kind of advice - it's usually on the contrary
So you have to make all these decisions all on your own and there's absolutely no time to lose. Judgement is not your strongest side under conditions such as depression, shock, despair, grief and anger. Some people go a lot further than just the dairy and gluten free diet. I think this diet thing was a small sacrifice to make if it could help him. Now I'm ready to re-evaluate this decision and I want to know what other parents (and perhaps autistics themselves) feel about this subject.

I have no problem eating a gluten free diet. The other night I had rice, filet mignon, and a salad. I'm having grilled flank steak and rice today for lunch. Rice is better from a storage issue if you cook for one.

You could try the Lactaid pills to see if that changes the situation any. I find I can eat a small amount of ice cream at the beginning of lunch or dinner without issues.

I am Asian and do have lactose intolerance.

A kid may prefer baked or grilled meatballs instead of steak as being easier to eat.

Last edited by BTDT on 20 Mar 2019, 12:10 pm, edited 1 time in total.

Yes, Irritable Bowel Syndrome may also require less gluten and/or dairy products, but that seems to vary from person to person.

There is a lot of false information regarding the causes and treatment of people with autism. There are even false claims of cures for autism -- DO NOT ATTEMPT TO USE THE "BLEACH CURE", as it could actually injure your child, cripple him, or even kill him.

If your son is a picky eater, it is important to provide him vitamin/mineral supplements to ensure that he is not missing out on important vitamins because of his eating habits.

I'm curious as to why Lactaid for someone on a dairy and gluten free diet? Especially since it contains mannitol and sucralose - both of which can cause gastric upset.

Yes there is a terrible amount of bad and contradictory information out there about autism and a lot of it is aimed

at either ripping parents off or blaming them. If you do not suspect your child of being dairy intolerant, then

reintroduce dairy (very slowly because you may have made him intolerant by cutting it for so long) and the same

with gluten. A general healthy diet is best for most people including autistics, unless you know there is an issue

with something. I developed an intolerance to dairy as an adult but was fine with it as a child. It did not affect my

autism and I am not intolerant to gluten. Before following any more advice feel free to check in here with it as a

lot of the advice out there is useless and some is harmful, even dangerous.

Sorry if this sounds harsh, but gluten-free bread and vegan cheese are neither particularly nutritious or appetising. It's perfectly possible to eat gluten, lactose free food that actually tastes great and has high nutritional value, but you need to do a lot of experimenting and cooking from scratch, using fresh ingredients.

If he's not actually intolerant, the diet won't help and if he actually is you'll need to find a better solution, or he'll probably stop eating altogether.

^ +1

Most people on this site are autistic, parents included. I'm an autistic parent to an NT child. You won't run into a lot of NT parents here, but I'd say we give better advice on this kind of issue.

Firstly, autistic people have higher incidences of autoimmune diseases than the average population, and particularly gastrointestinal issues. If you have reason to believe your child has such an illness, get him tested. If not, a varied diet helps with everything. A restricted diet makes everything worse, see https://www.theguardian.com/uk_news/sto ... 48,00.html

The thing is, modern diets contain unhealthy amounts of processed wheat and dairy. If your child doesn't have gastrointestinal issues, there is no reason to keep him gluten and dairy free. On the other hand it's important to limit such foodstuffs to reasonable amounts, and feed him enough fruit and veg. I notice myself that my ability to focus and communicate gets worse if I eat junk food or a very limited diet.

Some stims are for fun and some are because of stress. If he's stimming more, I 'd look for sources of stress in his environment, but having a restricted diet could be a source of stress. The eye thing is probably just a visual stim, I did lotsa that. Anyway, stimming is generally good. The stuff he is doing seems harmless, and it's important not to restrict stimming too much, it affects mental health badly. Detrimental stims may be redirected/replaced by other stims.

I second the vitamins and minerals. And watch out for sweeteners if IBS is an issue.

It will only every help at all if she has an actual allergy or true sensitivity to it and most people don't.

Unless they have a legit lactose or dairy allergy or intolerance and celiac disease, you're not going to accomplish anything.

Underwater said much of what I was going to say.

yes, ASD children may have more food issues than NT kids.

no, the special diet won't help unless your child actually is sensitive to those foods.

Pure coincidence that a certain number of ASD children improved with the special diet. Let's be honest, if a child feels awful all the time he isn't gong to learn and he isn't going to behave his best. Remove the foods making him feel awful, and you will see improvements.

For my son, the food was soy (obviously it would have been self-defeating if we had tried being diary free with him). For others, it can be eggs. Red dye. You name it. ANYTHING people are commonly sensitive to might prove to be a problem for your unique child. The only way to know is by elimination diets (testing shows allergies, but not usually that tricky thing called "sensitivity"). We found my son's sensitivity by pure luck. That happens a lot. But let's be clear: my son was and still is ASD. That never changed. His level of comfort changed and, as a result, his mood and mind did. Healthy children are happier and easier going children.

All kids narrow their food choices around your child's age. I raised one ASD child and one NT child, and they BOTH got very picky, then eventually expanded their eating again. This is normal. Keep a healthy variety of food available to your child and let him eat naturally.

Kind of a side note, gluten and casein (in diary) don't have to be tied together. It is possible to be sensitive to one and not the other. The complete elimination of both is a traditional diet for Celiac disease. In the US some people believe that our gluten is particularly troublesome due to chemicals more common here than in other parts of the world. Soooo many factors go into how our bodies react to food, it really can be tricky figuring it out.

Perhaps it would help to plot what he eats visually on a large graph, to help spot correlations with his health.