[ives6797]

Hi, I haven't posted in this folder before. I have a 4yo son (Anthony) that 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, that's the dx criteria for TS. 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!

He LOVES oatmeal so I'm wondering if this oatmeal would be ok for him? It says that people with Celiac can eat it so I assume so? It wouldn't be the same as his Quaker instant oatmeal that he loves, but I could probably add in some maple syrup or something. Another favorite of his is meatloaf, and I was able to substitute rice milk and rice bread for milk and bread tonight to make my usual recipe. Everyone loved it!

I'm hoping he will get better, while realizing that he may not. It's a long shot I suppose.

Anyone happen to be here for neurological things like TS? Or does pretty much everyone here have Celiac? Hope it's ok that I posted.

Dawn

[RathyKay]

Wow! It's been a long time since I've posted on this forum.

Originally Posted by ives6797

Anyone happen to be here for neurological things like TS? Or does pretty much everyone here have Celiac?

This group is actually one of the few that isn't dominated by Celiacs. A lot of them do (did) have Celiac symptoms, but didn't get the gold star diagnosis. But there are a few with neurological symptoms.

My son Tom has epilepsy. Not exactly tics, but to my way of thinking they're probably cousins. We went dairy-free first. It turned out to be his biggest seizure trigger and allowed us to get him off his seizure meds. (Major "Yay") Once off the meds, we were able to figure out that rice and coconut also triggered seizures. It took me awhile before I convinced myself to try gluten-free. Gluten doesn't appear to affect his seizures, but it does seem to play a role in his coordination. Once GF, he quit running like a toddler with his legs wide apart. He's better at kicking, throwing; he's showing much more interest in writing. Don't get me wrong, he is still delayed, but we've seen a lot of improvement with our dietary intervention.

Have you looked into DAN! doctors? DAN! is Defeat Autism Now! I know you didn't mention autism at all. Tom is not technically autistic, but he does have a few autistic tendencies. You don't have to be autistic to see a DAN! doctor. We've been seeing one for about a year. He ran a lot of bloodwork on Tom to determine vitamin / mineral levels (among other things) and we are supplementing accordingly. One of the many comments he made while going over results with us was on hypotonia. (And off the top of my head, I don't remember what it was... "XXX helps with hypotonia.") I've been really pleased with the progress we've seen with his help.

I'm assuming your son is in Special Ed? Or at least receiving OT services of some sort?

I think a lot of folks here found that they did have to give up dairy. As I wrote above, we gave it up first. I think you should definitely do both. And, I think you'll see some positive changes. I'd also recommend you give him a good multi-vitamin, if you're not already doing so.

[ives6797]

Thanks so much for the reply!

Yes, my son started in our state's birth to 3 program for speech delay and then started speech therapy at the elem school when he turned 3. He has since added on Occupational Therapy there too.

I am really hoping to see a change. Do you know how long it typically takes to see a change if you will see one? I saw one person say somewhere that tehy saw change in their sons tics in a *week* (wow), and someone else said their son was tic free within 2 months.

Dawn

[jccgf]

Hi Dawn,

I'm happy to hear you are going to try this intervention for your son. It can't hurt, and it just might help!

There is far more research out there on gluten sensitivity and neurological symptoms than there is on casein sensitivity, yet either or both are capable of causing problems. I think your best bet is to remove both.

I would commit to at least a six month trial, but you may see improvements before then. My daughter had some neurological symptoms resulting from gluten sensitivity... and although it tapered slowly, I would say her neurological symptoms had vanished within two months time. She also had digestive issues (some do, some don't) and we saw improvement in those in the first week. It can be variable, and it takes a longer time to clear the gluten out of your system than the casein, so be patient... and be sure you are being 100% complete!

I'm pretty sure that Rice Dream milk has barley in it, making it NOT GF. Check the label. We use Almond Breeze Vanilla and Chocolate, and I think it is better than some of the others we tried initially... but it all takes a little getting used to.

sensory integregration dysfunction, hypotonia, apraxia/ oral motor/fine motor/visual motor issues

These are certainly all things that may respond to a gf/cf diet. I've heard a few remarkable stories over the past years of children making huge gains in areas of speech, motor, and visual motor skills.

I have another daughter who had seizures, and tics for just a few months (both vocal and motor). It was a confusing time, but her neurologist would never give us a straight answer on whether the tics were 'seizures' or their own thing. In any case, we found out she was deficient in vitamin B6, zinc, and a few other things. Nutritional deficiency is not uncommon in children with neurological problems, so be sure to look into that. If your son isn't on any vitamins, I'd be sure to start him with a multivitamin, and my guess is the book you are reading will give you other recommendations for nutritional supplements.

You can also check The Gluten File for more information about gluten/casein sensitivity. The Favorite Links page has links for gf and gf/cf sites, safe food lists, etc.

Do not be afraid of the diet. It is both very complex and very simple. Very complex because gluten lurks everywhere and you have to be very careful when eating processed foods and eating away from home. It is very simple if you stick primarily to a whole foods diet that includes meat, fruit, vegetables, rice, potatoes, eggs, nuts and berries.

Oats are controversial, although most literature is saying they are ok for most people with gluten sensitivity. Sticking to the McCann's Irish oats is probably wise if you are going to use oatmeal, as the biggest concern is cross contamination in the fields, and this brand is supposed to avoid that.

Don't forget about Cream of Rice, and even poha, which I only learned about a few years ago.. rice flakes that cook up much like oatmeal! There is also Quinoa, and Alti Plano makes a flavored variety... http://www.altiplanogold.com/

The learning curve is huge. However, if you start simple with whole foods, and slowly add back in some of the processed foods... little by little, it makes for a much smoother transition.

Here are some of the safe food lists... but always read labels because ingredients do change.
Celiac.com Safe & Forbidden Food Lists
GF Products- Mainstream- Wheaton Gluten Free Support Group
Delphi Celiac Forum Safe Product List
Delphi Celiac Forum Cross Contamination Checklist
GF/CF DIET


There is a new GF/CF ice cream out called Good Karma, and it is just divine!
http://www.goodkarmafoods.com/

I very much hope that your son will show improvements on the diet. It is definitely worth the effort to see if it might help him, so hang in there if you ever feel it is too difficult. Again, I'd try to commit to a six month trial, but you may very well see some improvements earlier than that. Unfortunately, the learning curve lasts almost six months, but most people who have been doing this for years and years find it very doable, albeit sometimes inconvenient when traveling and trying to eat away from home. We've been 100% gluten free and mostly cow's milk free... for six years now. You just end up with a slightly different (and usually healthier) grocery list!

Cara

P.S. I also agree about seeing a DAN! doctor. None of my children are autistic, but I took my daughter to a DAN! doctor because they understand gluten sensitivity, which my daughters have. They fully understand gluten/casein sensitivity and provide support for a gf/cf diet, they place emphasis on nutrition and healing the gut, and do the testing to determine what supplements may be helpful.

[RathyKay]

With gluten, we saw some small, positive changes within the first few days. With dairy.... you need to go dairy-free for six weeks to get it all out of your system. Tom had withdrawal seizures two weeks into our DF experiment. At the time, I didn't know they were withdrawal seizures; I was just disappointed. The seizures were much milder and shorter than what we had been seeing, but they were seizures. But, I had committed to the six week experiment, so we kept going. After eight weeks DF, we let him indulge for Claire's birthday. He was sooo hyper afterwards, but we blamed it on the sugar (doughnuts for breakfast). It wasn't until Monday morning when his teachers demanded to know what I had given him, that I realized dairy did affect him. His teachers said they would tell him to sit, and he would, but then he'd immediately jump back up. He threw his work on the floor. OT was a waste of time. He was not behaving like they were used to. It took three days for him to calm back down.

It took me a bit before I felt comfortable reducing his seizure meds. We went slowly and we had lots of "guess what Tom did today?!" conversations. (And yes, I did consult with his ped neuro before reducing meds. He thought we would see seizures, but if we felt the side effects of the meds outweighed the benefits he would support us. He's been pleased with Tom's seizure control and has not suggested going back on meds.)

Anyway, going GF started up the "guess what Tom did today?!" conversations again. Although, it was more of Mr. Kay: "Look what he's doing!" Me: "It's the gluten." (Mr. Kay wasn't thrilled with going GF. He now agrees it is worth it.)

[ives6797]

Thank you both for all the info!! Is Cream of Rice dairy free?

My boxes of Rice Dream say Gluten Free right on them and I don't see barley listed as an ingredient, so they should be safe.

Some things are so confusing... like the Silk Soymilk and soy yogurt has the D symbol next to the kosher marking, symbolizing dairy in the product... and right above it, it says "Dairy Free". So I called Silk to ask... they said that the company makes other foods that do contain dairy, but that they sterilize the equipment before they put the Silk through AND they test each batch to make sure they are dairy free, yet it still has the D symbol for dairy. So that makes it hard to tell, I was planning on using the symbols D/Pareve to tell if items have dairy or not.

I found one company that I am really NOT happy with. KRAFT. This is a major company, they should have a list of what products are gluten free and or dairy free, shouldn't they???????? The other companies I caleld were all fine and were immediately able to answer my question with a "YES, that product is definitely GF". Kraft on the other hand, gives me some lame "non-answer" about how they list their ingredients on every package and that I need to be careful reading labels. THANKS FOR THE HELP!!! Unbelievable. I called them twice too, in case I got an answer from someone else.. same thing. The second one actually said taht it is next to impossible to label everything GF... I told them Walmart does it! I've noticed under their ingredient list on their Great Value products, they label them Gluten Free. But KRAFT can't?!?! Come on. I may not buy Kraft items.

Rathykay, Is "Mr Kay" his teacher?? How can he be against Tom going GF?? He has nothing to do with it!!

Dawn

[jccgf]

Cream of Rice ingredients are: granulated rice.... and you make it with water. And it says "gluten free" on the front of the box, always reassuring.

I wonder if Rice Dream has listened to the gluten free community and changed their ingredient list! I'm going to have to check that out... thanks! If it says gluten free right on the box, and you don't see barley malt on the ingredient list... I think you are good to go. Sorry for the false alarm! I think this must be an ingredient change in the right direction, for a change! Sure enough, I don't see barley malt either!
http://www.tastethedream.com/products/category/202.php
This makes me happy because I think they produce these in the single serve cartons, and my Almond Breeze does not. Single serve would be great for traveling! I can't wait to go grocery shopping, now.

Rice Dream vanilla ice cream is also gf, and I think neopolitan and one of the chocolate varieties, but they have some that aren't... like one with cookies.. but the Good Karma are all gluten free/ casein free, and some of the premium flavors are fabulous.

I know making those phone calls can be so frustrating! Kraft is one of the manufacturers, though, that say they will disclose all ingredients on the label, and is supposed to be a trusted manufacturer. However, I agree that their non-response to phone inquiries doesn't leave a good impression.
http://www.glutenfreeandbeyond.org/f...opic.php?t=418

New labeling laws have helped a lot to identify products with wheat. Generally, if a product has wheat you will see it quickly in the Contains: statement at the end of the list of ingredients. You still have to read the ingredient list for barley (and rye) and just to be triple sure, but it saves the trouble of reading the ingredient list if you see WHEAT highlighted in a contains statement from the start. It just goes back to the shelf.

Cara

[RathyKay]

I have no idea on the Cream of Rice. We're avoiding rice. I don't know my Kosher labeling laws. I read the ingredients. For milk, I'm used to looking for casein, lactose and whey, in addition to the obvious milk, cream, cheese, and yogurt. With the new allergy labeling laws, I think it has to actually say "milk" or "casein from milk" or some such obvious way. Wheat also has to be labeled, but rye and barley (also glutenous grains) don't have to be specified. That's where the trouble comes in. Kraft is actually a good labeling company. They will not hide the gluten. But, you do have to read the ingredients and know that rye and barley and wheat are glutenous. Here's their info: http://www.kraftfoods.com/health/art...ee_0623031.pdf.

Originally Posted by ives6797

Rathykay, Is "Mr Kay" his teacher?? How can he be against Tom going GF?? He has nothing to do with it!!

Uh... Mr. Kay is my husband and the father of my children. So, I usually give him a chance to say NO before I do what I want anyway. Since I am the chief cook and bottle washer, any changes in Tom's diet are reflected in what I serve to the rest of the family. Mr. Kay eats out for lunch at work, so he's only low-gluten and low-dairy.

[ives6797]

Oops! DUH. I should've paid more attention to your username, huh? lol

Thanks again for the info, ladies

I'll have to check into those flavored rice flakes. Have you tried tehm? Or heard anything about them? I'm hoping they will be suitable for a picky 4 year old. I'm not having good luck with bread on that front! Speaking of, any recommendations for bread?? Thanks so much!

Dawn

[jccgf]

The best bread we have tried is from Kinnickinnic. I'm lucky, and can now find it at one of my local grocers. Another grocer carries their dry products, but not the frozen. The Kinnickick bagels are awfully good, too. Of course, you can order these via mail, but you might be able to find a local place that carries them, or would if requested
.
I usually get the white rice bread because it is what my daughter likes.
http://www.kinnikinnick.ca/

My daughter actually prefers my homemade bread...but once in a while I like to buy it . I think the recipe is here somewhere...I'll track it down, and maybe you can give it a try. GF bread just takes some getting used to. It might be better accepted if toasted, or as french toast!
http://neurotalk.psychcentral.com/sh...35&postcount=2

Here is a handy link for other Gluten Free Vendors~
http://www.gfmall.com/

The flavored flakes are Quinoa, and the taste... well, it depends! I like it fine, but my daughter doesn't. I like the almond chai and apple something, I think. I haven't tried the chocoate, but might soon.

Cara