^^ PP here, and I should add that we have to avoid even trace amounts of gluten and soy.

Have an ADHD kid, and a gluten free/soy free/artificial color and sweetener free diet has helped immensely. She does not seem to react to dairy. We have a confirmed allergy diagnosis for gluten but not soy, but I can tell when she has eaten something containing soy just from her behavior. The differences in her behavior, ability to focus, and sleep really are stark.

OP,

I could have written your post. My 4yo has ASD with language delays/deficits and chronic constipation, and I, too, don't expect to "cure" him with a dairy-free, gluten-free diet but have gone down that path to see if it will make a difference as I think that there are many factors at play in helping him live the best life he can with autism. We have been doing a pretty strict gluten-free and dairy-free diet over the summer, and for whatever it's worth, it has made a significant difference in his language (speaks more and more clearly), overall behavior (less fussiness, hyperactivity) and much less constipated. It sadly has had no effect on certain things like repetitive behaviors, social awkwardness, etc. He accidentally had gluten at a camp event in the morning which I found out about later, and his OT noticed he was much more hyper and not as attentive. I know it's all anecdotal, but really there's been no bad effects from avoiding gluten and dairy so we are sticking with it. By the way, I do the diet with him and feel great - my skin is glowing - seriously!

I started going dairy-free first and then added the gluten-free component. We use UDI's brand bread - it's OK. My son has gotten used to it. We do Follow Your Heart cheese - it's the best nondairy cheese I've tried. We do coconut or almond milk and ice cream from So Delicious company. We do almond flour tortillas - sold by Siete Foods - which also makes no grain chips that are yummy too. Eating at home is easy - honestly there are so many products available for all the usual foods, plus it forces me to cook super healthy like lots of fish and chicken and veggies which my son has gotten a lot better about eating since being on the diet. Eating out is a bit tricky, but we just order him things like plain fish and steamed veggies -if he's hungry enough, he surprisingly just eats it! There are plenty of restaurants that have gluten-free or gluten-sensitive menus and then we just order off those and ask them to make sure there's no dairy ace well. As for bday parties - I just feed him well before the party, he stays for the activity and watches the bday cake part and then I give him his own treat on the way out if there's a pizza lunch, etc.

It 's not easy, but it's really not that hard either thanks to all the products out there and stores like WF that carry those products. Giant has a great GF section too. Also, my son just started understanding and accepting that he can't eat gluten and dairy. He has cried that he wants a cupcake when seeing everyone else eat one, but I quickly remove him from the situation and explain very simply that he can't eat gluten or dairy because it hurts his tummy: "those cupcakes have gluten and dairy; they hurt your tummy. We'll get another treat later". He gets it now. Recently, he saw something at the grocery store he wanted and asked me if it had dairy or gluten.

Good luck to you!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think very few people see any real improvement in neurological conditions with elimination of dairy and/or gluten. The people that did see real improvement are very evangelical about it, which I assume is because it made a huge difference in their life.

In my personal view, these conditions are largely diagnosed by symptoms, not by causation or even underlying neurological physiological markers. So my guess is that there are actually multiple conditions being called the same thing, or multiple causes for the same condition. For some small percentage of people, it may be food sensitivities.
Sort of like how 100 years ago there was just "cancer" -- now we know that cancer can be caused by environmental toxins or by genes, and that different types of cancer grow in different ways and respond to different treatments.

I think the only way to do it is the really hard way --- the old school total elimination test. Eliminate both for at least 3 days. (Some people say that you have to wait months to see a difference....I just don't know.) Add back in one. Etc.

There is simply no scientific proof it works to "cure" autism. But you are right, some people are very evangelical about it.


https://spectrumnews.org/opinion/reviews/going-gluten-free-unlikely-to-help-most-people-with-autism/

https://www.autismspeaks.org/science/science-news/study-glutencasein-free-diet-doesn%E2%80%99t-improve-autism-symptoms

OP here - should have been clear that I am absolutely not expecting a special diet to "cure" my son's autism. He has ASD, period, and always will. But I am hoping it will be help lessen some of his behavioral symptoms, and will help eliminate or reduce his ezcema and GI issues. Diet definitely impacts how I feel, and when I feel like crap I am moody and have low energy. I don't know why a child couldn't have a similar reaction if he doesn't feel well.

It's a daunting task, though, to do strictly. No parties, meals out, travel is difficult as you have to bring foods with you, etc.

I wish I could find the blog where a doctor wrote about doing it strictly with his family for months and months, and they thought it was making such a difference, and then they went on a trip and they forget the food and just use regular foods and ... no difference. At all.

I think sometimes people see a difference because when they eliminate dairy and gluten, they also eliminate a lot of junk food, and increase protein levels significantly (because if you can't eat simple carbs in white flour, you're probably going to eat stuff with a lot more protein). A lot of us have commented that we see notable behavioral improvements with increases to protein. I have no idea why that is, but it's the one thing I've seen make a difference, other than meds, with the behavioral symptoms. I think some of these kids are extraordinarily sensitive to fluctuations in blood sugar.

Anonymous wrote:

Anonymous wrote:P.S. My kids are strict gluten free and dairy free and everyone everywhere comments that they're the sweetest and most well behaved kids they've ever seen. Purely anecdotal of course but I do think their great diet (we give them no processed food in addition to no gluten/dairy/soy) contributes a lot. It certainly can't hurt your child and in my opinion it's a wonderful idea to try it!

OP here - I'm impressed! How do you handle when you are out of the house, traveling, etc when it comes to such a strict diet?

I'll tell you: They don't eat out and they don't go to friends' houses for dinner, lunch, etc. No movies, parties...anything where there is outside food.

Anonymous wrote:P.S. My kids are strict gluten free and dairy free and everyone everywhere comments that they're the sweetest and most well behaved kids they've ever seen. Purely anecdotal of course but I do think their great diet (we give them no processed food in addition to no gluten/dairy/soy) contributes a lot. It certainly can't hurt your child and in my opinion it's a wonderful idea to try it!

OP here - I'm impressed! How do you handle when you are out of the house, traveling, etc when it comes to such a strict diet?

Anonymous wrote:

Anonymous wrote:The gold standard to see how well a body is handling gluten or casein is the elimination diet. Months is better, but I'd say at least 6 weeks. And it needs to be 100%.

Not for celiac disease.

Also you need to identify what you're focused on. If it's chronic constipation, it's probably a combo of factors chiefly not enough fiber, water, or exercise and perhaps too much dairy.

If you're looking to see if it will improve behavior then 6 weeks would probably be a good test window. There's no clinical evidence that it helps with this.

Thanks - his constipation is not diet related. He's been constipated since he was 6 weeks old and until age 2 was on a strict diet with no dairy, lots of fluids, prunes, fiber and so on. Made no difference. Chronic constipation is not always due to too much milk. He's also incredibly active.

P.S. My kids are strict gluten free and dairy free and everyone everywhere comments that they're the sweetest and most well behaved kids they've ever seen. Purely anecdotal of course but I do think their great diet (we give them no processed food in addition to no gluten/dairy/soy) contributes a lot. It certainly can't hurt your child and in my opinion it's a wonderful idea to try it!

Anonymous wrote:

Anonymous wrote:The gold standard to see how well a body is handling gluten or casein is the elimination diet. Months is better, but I'd say at least 6 weeks. And it needs to be 100%.

Not for celiac disease.

Also you need to identify what you're focused on. If it's chronic constipation, it's probably a combo of factors chiefly not enough fiber, water, or exercise and perhaps too much dairy.

If you're looking to see if it will improve behavior then 6 weeks would probably be a good test window. There's no clinical evidence that it helps with this.

Yes, even for celiac disease. Blood tests and poop tests aren't a reliable indicator one way or the other, and even a biopsy can be inconclusive. The only way to tell is to do a strict elimination diet for 6+ weeks (ideally a few months), see how you feel, and then try eating pasta and see how you feel.

In my case, the effect was sudden - after an hour I was on the floor screaming with pain so bad that I almost went to the ER. Never experienced anything like it before that. After going off gluten, there were tons of positive effects for me including being able to have children when previously I had miscarriages that my doctors couldn't explain with all their testing. But I never had blood in my poop or anything like that.

Anonymous wrote:The gold standard to see how well a body is handling gluten or casein is the elimination diet. Months is better, but I'd say at least 6 weeks. And it needs to be 100%.

Not for celiac disease.

Also you need to identify what you're focused on. If it's chronic constipation, it's probably a combo of factors chiefly not enough fiber, water, or exercise and perhaps too much dairy.

If you're looking to see if it will improve behavior then 6 weeks would probably be a good test window. There's no clinical evidence that it helps with this.

Side note re: blood/skin allergy tests. My son is allergic to dairy. He ingests dairy, he breaks out in hives. Not even a large amount of dairy at that-- A very small amout of dairy causes hives. This has been proven via a dairy challenge test in the allergists office. However, while the blood test shows a low level of allergy to dairy, the needle-in-the-back test shows none.

Just putting this out there in case any parents have taken their kids for (for instance) the needle-in-the-back test (cant remember the actual name of it right now) and it came back negative. Insist on a food challenge test and/or blood test also. If you really believe something is causing your child physical problems, trust your instincts.

We worked with a nutritionist for this - we started w dairy and eliminated most - but said things like frosting on a cake were ok Bc they were mostly fat - same with butter - we also didn't eliminated baked dairy in things like a cupcake at a birthday party. We eliminated for 8 weeks and now allow pizza once a week as well as pizza at birthday parties. We haven't eliminated gluten.

OP, sometimes constipation can be helped by drinking more water or eating more fresh fruits.

The gold standard to see how well a body is handling gluten or casein is the elimination diet. Months is better, but I'd say at least 6 weeks. And it needs to be 100%.

Op, I don't think celiac can be detected through a skin test. You need the blood test and need to keep eating wheat beforehand so that it's accurate. It's an autoimmune disease not an allergy.

Dairy makes constipation worse. So you may want to cut back. Usually celiacs will have explosive diarrhea.