Anonymous
Post 07/28/2017 00:07     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote:OP, personally I would try and find a meatball without gluten and dairy or make my own as I try to be as strict as possible with the diet. Also, I totally get trying to expand a palate of a super picky child with SN. You will be surprised how well he will eventually eat when he is truly hungry, and there are none of his usual meatballs. Variety is good for them, but I understand as a mother how distressing it is when your child refuses to eat something. My son unfortunately eats no berries and is also picky with protein. He loves turkey bacon though and will eat fish and chicken that I cook if that's all that's offered and he's in the mood. He is big for his age so I guess I don't stress if he doesn't eat as much one day b/c he's not failing to thrive from a weight standpoint. Hope it goes well! It does make a difference for us and is overall a healthier way to eat. I wish I could be as strict and organized as the person who has the perfectly behaved children, but we are no where near that level of organization, and my child is very far from perfectly-behaved, but his behavior and ability to focus is improved on the diet. I do believe gluten and casein affect his brain, and he is slowly beginning to read after the fog has lifted. On dairy and gluten, he had a "glazed" look in his eyes. Even the doctors he sees at CNMC have told me to continue the diet as it's working.


I'm the PP with the well behaved kids... I didn't say their behavior was perfect! We still have our moments, I promise you. But overall, it goes back to what you said. Because of their diet, their behavior and ability to focus are miles ahead of other kids. So it's easier to reason with them, even at very young ages. I also run a super tight ship in terms of behavior, but the reason I'm able to do that is that they're really pretty good to start with. Then I just nip it in the bud whenever there is an issue, and I'm strict about it. For example, if we're in the car on the way somewhere, even somewhere fun that we don't get the chance to do often, and the kids are fighting or something, we literally turn around and come back. It just happened yesterday, and I'm sure it won't happen again for at least a few months. Stuff like that. I wouldn't say zero tolerance, but pretty close to it. Which I honestly don't think would ever be possible, regardless of discipline ideas/techniques/standards/whatever, if they weren't eating optimal foods.

I don't know the glazed look but I do know the glazed feeling, because I used to feel it myself. It was much harder to think. I read once that gluten and casein proteins look like opioids to the body, so it's a bit like a drugged effect. I'm not sure how accurate that is, but it seems to describe our experiences.

Regarding the level of organization though, every day is a struggle, just like for everyone else with little kids who isn't rich enough to afford nannies and housekeepers and things. The food stuff is non-negotiable to us, but tons of other stuff slides. For example, I literally had to buy a few more washing baskets because there are baskets filled with clean laundry to deal with, but the hampers are once again overflowing... We're happy if all of us have clean clothes

We can all just do what we can do. It's good to have awareness about the effects of the possible choices and do the best you can. Good luck!
Anonymous
Post 07/27/2017 14:49     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote: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.


Celiac can be diagnosed by skin biopsy. Some celiacs get distinctive rashes as opposed to the GI symptoms and a biopsy of that rash is used to diagnose celiac.


Not every celiac gets the rash. Better to do the blood test so you can test for the gene.


NP here. The blood test is for gluten antibodies not genes. If the blood test is positive and you have the rash, then they can biopsy the rash to confirm the diagnosis. If you don't have the rash, then you need an endoscopy.
Anonymous
Post 07/27/2017 14:30     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote:
Anonymous wrote: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.


Celiac can be diagnosed by skin biopsy. Some celiacs get distinctive rashes as opposed to the GI symptoms and a biopsy of that rash is used to diagnose celiac.


Not every celiac gets the rash. Better to do the blood test so you can test for the gene.
Anonymous
Post 07/27/2017 14:29     Subject: Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote:No, I found none of these diets helpful. Made no difference in ADHD or anxiety child. Then celiac testing and all was negative.


If you go gluten free b/f the testing for celiac then it will be negative.
Anonymous
Post 07/27/2017 12:20     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
OP, personally I would try and find a meatball without gluten and dairy or make my own as I try to be as strict as possible with the diet. Also, I totally get trying to expand a palate of a super picky child with SN. You will be surprised how well he will eventually eat when he is truly hungry, and there are none of his usual meatballs. Variety is good for them, but I understand as a mother how distressing it is when your child refuses to eat something. My son unfortunately eats no berries and is also picky with protein. He loves turkey bacon though and will eat fish and chicken that I cook if that's all that's offered and he's in the mood. He is big for his age so I guess I don't stress if he doesn't eat as much one day b/c he's not failing to thrive from a weight standpoint. Hope it goes well! It does make a difference for us and is overall a healthier way to eat. I wish I could be as strict and organized as the person who has the perfectly behaved children, but we are no where near that level of organization, and my child is very far from perfectly-behaved, but his behavior and ability to focus is improved on the diet. I do believe gluten and casein affect his brain, and he is slowly beginning to read after the fog has lifted. On dairy and gluten, he had a "glazed" look in his eyes. Even the doctors he sees at CNMC have told me to continue the diet as it's working.
Anonymous
Post 07/27/2017 04:53     Subject: Gluten-free/dairy-free - how strict do you have to be?
No, I found none of these diets helpful. Made no difference in ADHD or anxiety child. Then celiac testing and all was negative.
Anonymous
Post 07/27/2017 04:23     Subject: Gluten-free/dairy-free - how strict do you have to be?
My infant has confirmed Celiac disease and a casein allergy but her symptoms are different from Mine ( strangely pregnancy and breastfeeding has put mine into remission but I eat what my child eats) She naturally loves meats so this is great. But, I use gluten free brands for everything, So delicious ice cream. We have tried soymilk but she vomited terribly after trying it twice. We are trying almond coconut blend but she won't drink it. Maybe rice milk is next. I need to wean soon.....She will be 18 months soon. I am following this for future ideas with school and parties.
Anonymous
Post 07/26/2017 17:24     Subject: Gluten-free/dairy-free - how strict do you have to be?
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?


It's a lifestyle adjustment, that's for sure. I had to learn to cook. We had to spend a lot more money on food and a TON more time in the kitchen.

Generally, we take food with us. Packed lunch whenever we're out for the day. You can do anything like that - beach trips, theme parks, museums. We can usually find a bench somewhere to sit the kids and have our packed food. Kids are fine with it, they love the food. Lots of options. Left overs from the night before (e.g. kids' fave snack is bacon, which they're very happy to eat cold), any fruit (fave is berries), even gluten-free sandwiches. Sardines from a can are also a good option although can be hit or miss depending on the day for us. We pack wipes and things to clean up so we don't leave a mess anywhere.

We try to plan vacations around food. We get apartments with kitchens so we can cook, and rent a car if it's somewhere that we fly to, and we make sure that the stores nearby have decent food available. The food thing makes life a bit more complicated but most things are still possible.

We have ordered things from restaurants before (obviously telling them about the gluten allergies), and just been very specific about it. e.g. ask the chef for steaks with nothing except salt (because they'll often put a spice mix on that contains gluten or other mystery ingredients), yams with no topping and steamed veggies like brocoli, cauli, maybe carrots.

As for friends, it's true that it's hard to maintain regular friendships with normal people. We've moved around a bit recently but once we settle down, we will be joining groups focussed around food (paleo groups, for example, would be the best fit for us) to try to meet people whose diets are similar to ours. The worst thing for us isn't that people eat different food, it's that they eat it all day long. So many parents are literally stuffing junk food into their kids all day long, and it's hard to work around that. We stick to a fairly stable schedule each day and the kids know they can last until the next meal because they always get real food rather than white processed sugary chemical stuff that makes them high and then hungry again in a few minutes. Our kids eat four times a day, and we keep that schedule as much as possible even when traveling.

Generally, it's just a lot of planning. Worth it though, for us. My health is a ton better and some medical things are also getting better for the kids and DH too.

Good luck
Anonymous
Post 07/26/2017 15:47     Subject: Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote:To add more protein in his diet, use Great Lakes Collagen powder (in the green can). Very little taste and can be added to hot or cold things.

And I found that it helped me with constipation.


Thanks, I'll give it a try!
Anonymous
Post 07/26/2017 15:47     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote: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!


Thanks - this is super helpful! How strict are you in terms of things like breadcrumbs in meatballs? My son is a very picky eater with protein (despite literal years of trying to expand his palate) and that's one of the only meat products he will eat. Truly only 1 brand of them.

As for a dairy free milk, we use Ripple. It's pea protein based and has an excellent nutritional profile, although actually can be a little constipating for some reason. But no allergens and it's pretty tasty.
Anonymous
Post 07/26/2017 14:34     Subject: Re:Gluten-free/dairy-free - how strict do you have to be?
Anonymous wrote: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.


Celiac can be diagnosed by skin biopsy. Some celiacs get distinctive rashes as opposed to the GI symptoms and a biopsy of that rash is used to diagnose celiac.
Anonymous
Post 07/26/2017 14:33     Subject: Gluten-free/dairy-free - how strict do you have to be?
To add more protein in his diet, use Great Lakes Collagen powder (in the green can). Very little taste and can be added to hot or cold things.

And I found that it helped me with constipation.
Anonymous
Post 07/26/2017 14:18     Subject: Gluten-free/dairy-free - how strict do you have to be?
Get him tested before you go to an extreme diet.