I posted on the Gluten-free folder and thought I'd also share this here....

My 4yo son Anthony has neurological tics- both motor and vocal- that are about to be dx as Tourette Syndrome. He goes back to neurologist on Sept 10th, it will be a year of tics in Sept. He has other issues as well, that the neurologist says are neurological too (such as sensory integregration dysfunction, hypotonia, apraxia/ oral motor/fine motor/visual motor issues etc.)

I've read in a few different places that gluten-free diets have helped other kids with tics from TS. Someone recommended the book to me, "Tics and Tourette's: Breakthrough Discoveries in Natural Treatments" by Sheila J. Rogers. I'm ordering that book, and in the meantime, am already switching his diet to GF/CF in case it helps him. I wonder though, is it most commonly gluten only, or both? I wouldn't want to cut out the dairy too if I didn't have to, know what I mean?

I've been researching ingredients online- there are a lot of sites out there, and also calling the 800 #s on the backs of bottles of products to ask if they are GF. Some of it is very confusing. I've shopped at the GF section at a couple supermarkets and health food store, gathering up a good amount of things. Thankfully, I live very close to 2 really good health food stores that carry a good amount of items. Unfortunately though, they are both closed for vacation this week (strange coincidence!) so I had to go to a different one that isn't as good, in search of bread because the grocery stores didn't carry it. I've found some items I want to order online as well.

I gave him chocolate soy milk and he didn't like it, so I gave him Rice Dream vanilla with some chocolate syrup in it and he loved it! That was a big victory because he is a BIG milk drinker. Getting him to drink Rice Dream, with or without choc, is huge! I also just tried a different soy milk (Silk very vanilla fortified for kids) with choc syrup and he liked that too. The other one, that he didn't like, was a pre-made choc soymilk, so I'll just buy the vanilla one and add choc syrup.

I'm hoping he will get better, while realizing that he may not.

Has anyone else tried GF/CF? If so, how did it go for you?

Dawn

Hi ives,
I didn't go that route here sorry, but just wanted to say that I'm pleased to see a message from you. I'd been wondering how all that testing for seizures had gone. It's good to see that you now have a diagnosis (almost) because now you can look forward.

I'm sure others will stop by and respond regarding GF diet etc.. I have two children and neither used GF diet, although if I'd known my son was on autism spectrum when he was a child I probably would have gone down that direction to see if a trial helped with some of his digestive issues. However, I sometimes think that it's more likely that just a lactose free diet may have helped him. All our supermarkets here now have a section of gluten free products. Even though I don't follow gluten free diet, I sometimes buy those products. Probably much less expensive there than at our health food stores too. I guess it depends on the area. It varies so much.

Edited to add:
I forgot to mention that my son was always such a picky eater anyway, that if I'd put him on a gluten free diet way back when he was a little child he'd probably have not eaten anything too much. lol

Also wanted to add that tics typically wax and wane, so it's more than likely that you will notice that your son's tics are more active for some months or weeks and then there will be months or weeks when they're less active. Tics also will change. Some people will keep some core tics, but notice that other tics will come for a while and go away. Therefore I think it's always a helpful idea to keep a diary if you're going to try any type of treatments - natural or otherwise. I hope that makes sense what I wrote. Not quite awake here in Australia yet.

There are some very experienced people from Neurotalk who post on the Celiac and Gluten sensitivity forum here who should be able to advise on certain products.

Well, good to finally hear back from you. I hope all is going well.

p.s. I was curious about the green ribbon in your avatar and wondered what it says. Thanks. Scrap this last question. I figured it out.

HI Lara!

It's this:

Hi Dawn,

Yes, I have been dairy and gluten free among many other foods. I struggle to maintain the diet. For right now I've just tried to remain dairy free. I work in a day-care so I sometimes eat what the kids eat just because of my wants/cravings. However, when I'm home I always maintain that dairy free diet. Avoiding allergy foods helps me a lot. Everyone's food allergies/sensitivities are different so without testing, trial and error should help you figure out what bothers your son. I hope that the gluten/dairy free diet helps your son.

If your son seems to want the soy milk all the time, I'd start to be concerned about whether soy bothers your son. So watch out for that. We tend to crave what we're allergic/sensitive to. I know that soy is an allergy/sensitivity for me from allergy testing. I don't drink dairy milk that much anymore so I really don't notice the difference between soy & dairy milk. I crave soy milk & ice cream just as much as I crave dairy milk & ice cream. So just keep an eye out for that.

Carolyn

Hi Carolyn, it's not that he craves rice milk or soy milk (he is drinking both), he was a big milk drinker so I'm just glad he likes/accepts substitutes

Hi Dawn

wondering how things are going?

Cheri

Actually, things are going really well so far!

In the first week, we've already noticed he is ticcing MUCH less! It could be coincidence though, but we'll keep going and hope.

how encouraging Dawn

keep looking to that light at the end of the tunnel .........

There is so much to learn from each other's experiences, isnt there, and who knows how many others have been helped just reading your posts here as you seek and begin to find and share the answers that help your child.


all the best and keep us posted whenever you get a chance.

Cheri

Hi- my son showed great improvement when off dairy. then as he got older and noticed his own responses he cut out most sugar. I therefore wonder if the dairy issue is more the sugar)lactose ) than it is the protein. or maybe both.

My son is on a gf/cf diet.

Rice Dream is NOT gluten free! It contains gluten from barley protein. It should be listed on the box.

It's the only rice milk I know of that isn't gluten free