GFCF Diet Experts -- Need WDW help!!!

[tinkertiff]

Though we're Disney crazy -- actually lost count of how many times we've actually visited WDW , we need help from those folks who have autistic children on the GFCF diet. We're just starting the diet for my son, 9, who has high functioning Autism (w/severe ADHD & extreme anxiety). After years of various therapies and mixed success w/one specific ADHD med. (nightmare w/others), he's hit a deadend. We have to pursue alternative approaches. So, we're starting the GFCF diet, vitamins/supplements, waiting on blood/stool test results, etc., etc. We also feel he's at a point with language/development to understand a major diet overhaul - basically eliminating & changing everything he eats. Years ago, would've been very hard (though probably necessary, but you can't go back in time, right?) He's also VERY picky -- with oral sensitivity and texture issues. For those of you who have children on this, WOW -- it's OVERWHELMING. So much to read, learn and absorb. Almost like he's been diagnosted all over again! I've read it'll get better as we go along. We just pulled dairy away today. Wheat/gluten will be on Wed. So far, so good -- just a lifetime to go. But a small price to pay for improvement!

I heard WDW is a perfect place to travel if you are on a special diet. I need A LOT of advice from those parents who have experience dealing with the GFCF diet at WDW (good restaurants/hotels, entrees, snacks, dealing w/chefs, CMs, etc.) ANY TIPS are welcome!! There's so much to consider. We're planning a trip to WDW for May 5-8. This is our wedding anniversary, but also a "training trip" -- using WDW as training/practice for learning how to deal with the diet for a bigger vacation. We have a big trip planned for Las Vegas/Grand Canyon in early June (hubby has a conference). Our thought is to learn in a friendly, WDW environment before going to Vegas. (BTW, if anyone has any tips in dealing w/this in Vegas, that would be appreciated also. We're staying at the MGM Grand.) I'm really worried about the Vegas trip -- I don't know how willing staff will be to accomodate a GFCF diet. We had to start the diet now vs. summer -- on advice from his new doctor. Vegas trip has been planned for couple of weeks -- arrangements were already made. I'm scared the tagalongs (me, DS and DD) may have to stay home. Again, any travel tips are needed from the GFCF experts out there!!! Thanks in advance -- from the bottom of my heart!

 

[tinkertiff]

**bump**

 

[wide awake]

We've tried GFCF w/ our 15 yr old DS a couple times...once for a year and a half, then later for a little over a year. At one point we were planning a trip to WDW, and I called the chefs for each park and asked what was safe, then looked at all the menus on Allearsnet to figure out my plan. As I remember Flame Tree Bar-be Que was safe...then various items at different restaurants. The Chefs were excellent at helping me out. DS seemed to grow out of GFCF being a help, and at this point we're doing hyperbarics, supplements, and dietary enzymes. GFCF is SO hard !!! If you need any suggestions, recipes, etc, PM me. As a rule of thumb our best meals were things that were naturally safe...trust me, there is no good GFCF pizza ! We did like the Ian's chicken nuggets though, and the pastas were much better our 2nd time around. DS is also fairly picky, so things that he could eat he wouldn't...corn bread, potato salad, most fruits and vegetables, etc...I don't know if anyone has told you, but you'll probably need to stay away from soy too, which is unfortunate because the soy cheeses, ice creams, etc...are the best substitutes.

 

[Figment1964]

We were GFCF for a few years and went to WDW during that time. I got the numbers for the chef's when I made the PS's (now ADR's). I talked with the chefs and they are very familiar with this diet which helped so much.

At every restaurant the chef would come to our table after we'd been seated to go over our special request once again, just so they knew what to do. I thought they did a fabulous job.

Now we're off the GFCF "diet" part but my son doesn't eat anything with gluten in it without first taking a Peptazyde enzyme. That has helped us tremendously. He can once again eat normally and do fine.

The book that helped me was: Enzymes for Autism and other Neurological Conditions by Karen L. Defelice.

 

[wide awake]

Thinking back to my earlier post...there are some good substitutes...but my point was that it would be easier if your child got to like plain meat, rice or potatoes, veg, and some type of fruit dessert instead of the fake mac n cheese...which is pretty gross. But subs we used a lot...Gluten Free Pantry seasoned bread crumbs for meatloaf, meatballs, and fried pork chops...also their chocolate chip cookie mix...Pamela's brownie mix...and I don't even like brownies and I liked those...fruit sorbets w/ choc sauce...Amy's gluten/dairy free enchiladas. You probably already know, but just in case...best peanut butter cookie in the world, I got the recipe out of Gourmet magazine before I ever heard of GFCF...1 cup PB, 1 egg, 1 cup sugar, 1 teas baking soda...mix, do the peanut butter cookie thing, makes 2 dozen, bake at 350 for 8-10 minutes...easy dessert if you have people over...of course DS wouldn't touch them...or guacamole and chips, chicken wings, chicken tacos w/ guacamole, etc...Speaking of Gourmet...there was an article a few months back on baking gluten free...I scanned it, but the woman used flours that weren't easily available, you had to send for them, but she had great results...you may want to check it out. I did lots of stir frys...one w/ pork, garlic, and chili peppers that DS loves...fried rice w/ safe soy sauce. It is doable, and you can entertain and have normal holiday meals, but it takes lots of time and effort. I'm still stuck making a wild rice/mushroom/sausage stuffing along w/ my normal bread stuffing because my family got used to it...they HAVE to have both !

 

[tinkertiff]

WOW -- You both gave such great advice!! If anyone else has any GFCF tips, PLEASE share!!! All advice is welcome -- we need all the help we can get with this, believe me. I ordered some things from the speciality web sites -- will be delivered on Tues. Pulling milk/cheese/hidden dairy has been good so far -- wheat/gluten will be Wed. after deliveries are here. My son is very visual and has been rating things 1-10 (10 being best) -- Frozen GFCF waffles this AM were a 5 1/2 (A no go!). He rated the soy milk higher, BUT he's not really drinking it. Sips at it - really doesn't like it. (I did read about the soy being problematic - after I bought it.) He didn't like any of the milk subs -- rice milk, almond milk, etc. I'm hoping he'll like the Darifree (potato milk) when it arrives. He's very picky -- I can see I'm gonna to have to make a lot of things. I can live with this if it helps him. As a family, we're doing this with him as a team (as much as possible) -- to support him. We all had those GFCF waffles this AM -- was interesting, to say the least. Told him we're all in it together. (I told my husband no faces or gagging sounds as we taste test some of this stuff!! A straight face at all times is required ) We'll have to figure out ways with traveling, but we have some time to do it -- 4 weeks or so. We had a great conversation with my son, so he seems to really understand the need to do this. So far, so good. Years ago, he wouldn't have. Your suggestions have been wonderful -- I deeply appreciate your help/tips shared!

 

[VirtuallyMe]

I did the GF/CF thing with my Asperger's Son back when he was 10 (he turns 18 this May) We did that along with vitamin and minerals added as well- as some herbals- (it was to a point that he maxed out all regular medication doses and doctor was threatening to prescribe the antipsychotic medications)- our son also had Trichotillomania at the time... HE did the diet for about 2 years before he opted out of it himself (diets and meds)- so we slowly reintroduced the things back into his diet and found he had been flushing his meds for about 6 months at that point so we figured we could just stop the charade. He has been really fine since then- with only the occaisional reminder that the condition exists...

It is overwhelming to get started- and I am now experiencing this all over as of last Friday- I am wheat free myself- but for an allergy- ate it my entire life- went off for allergy testing and almost died last Thursday when they did my oral challenge tests- only got to be tested for wheat though-

I used to have a great bread recipe- the most like the texture of "real" bread I could find when my son was doing GF- of course it isn't exactly like- I've found that all the breads come out heavy and somewhat rubbery when compared to wheat bread- but it was probably the best. Also had some awesome cookies that were made with cornstarch (of course butter was one of the other main ingredients so that won't work for Cassiene free diet...

The peanut butter cookie recipe mentioned before is fantastic- we make a few changes- (oldest dd has won several cookie bake offs with those cookies)- we do the 1 large egg, 1 cup of peanut butter, 1 cup of powdered sugar (makes them creamier than the granualted) and a tsp of vanilla- just found the taste and texture to be a little better with that variety- when you take them out of the oven (again 350 degrees) they should be gooey and will need to cool at least 5 minutes before you remove them from the pan- if you over cook them they are lousy- but they do look raw when you take them out- they just need to set though.

I ordered a sample pack from Ener G foods- that should come out this week for me to try. We are lucky that many of our local grocery stores carry lots of WF/GF foods including all the flours- and prepackaged foods. I found lots more available now then were available 8 years ago- but our Autistic population in town is more aware now and does a variety of techniques to help with symptoms and things- I do recall a local health food store had a great chocolate chip cookie mix that most in our family swore was better than Great American Cookie Company cookie cakes- but unfortunately that Health Food Store lost its roof in the hurricane- so I will have to try to remember what it was- but as someone said something with a first name- that may have been the same.

We also shopped a lot at a local asian food market- where there were plenty of available brands of soy sauce and things like rice and bean noodles- those were much cheaper than ordering -often a small fraction of the pre-shipping cost...

If I think of anything else or locate some of my old recipes (I know I threw away my binder of recipes about 3 months ago- thinking if I needed them I could always look again on the internet- lol 8 years ago there wasn't nearly the wealth of information available- which is great but it sure does make it hard to find out where to start...

 

[Stitch65]

My son is 6 now (will be 7 in May) and has been GFCF for 3 years. He's also soy-free. We've been to Disney once before with his "allergies" (he is truly allergic to milk, and I find it much easier to just say that they are all allergies - donning the flame suit!) and the chefs were more than happy to accomadate and in most cases made him food off the menu. My son is very picky due to his oral sensory issues, so that trip consisted of a lot of plain chicken breats and rice. Now that was due to my son's preference, not what the chef's could do. This time around, we're going on the DDP and going to a lot of resteraunts, so he's excited to try new foods. His food base has expanded greatly and he now eats steak, baked potatoes, french fries, waffles, etc, etc. (of course they are all GFCFSF). He has made great gains on this diet. He now only sits with a language diagnosis from the school.

So dining at WDW was really no problem, actually it was a joy! Breakfasts at the world are the hardest, so we just bring a lot of banana bread (his favorite) and then we buy his a side of bacon and he's in heaven.

GFCF seems so overwhelming at first, I can remember sitting in my kitchen bawling about all the things he "can't" have. Then I started to view it as all the things he CAN have, like fresh fruits, vegetables and meat. Who really needs Spaghettios anyway (those were has fav pre-diet).

Feel free to PM me if you have any questions, we'll be in the world from May 5th - 14th.

 

[tinkertiff]

Thanks to all of you!! Stitch -- no flame suit needed. Sometimes less said is better -- I'm finding that out. My doctor's assistant has an affected child and she just tells chefs/waitstaff that her son has severe allergies, yada, yada vs. the entire autism spiel --. I've been saying it for 7 years now -- just "food allergies" would be a welcome respite -- short and to the point.

Anyway, if there's any more GFCF experts out there --- bring on the tips!! I really need them! My son is on Day 4 -- he's doing great so far. We started pulling gluten out a little earlier than planned -- so far, so good.

 

[Stitch65]

Here's some of my son's favs:

1. Kinnikinik Pizza Crust (it actually tastes good, I've had it! ~ his pizzas only have sauce on them and one topping like hamburger since he can't have soy cheese)

2. Kinnikinnik Yeast free Rice/Tapioca Bread (a little rubbery but the taste is good)

3. Fleishmann's light margarine (it's the only margarine that is GFCFSF)

4. Quinoa noodles (we as a family actually prefer these over wheat noodles!)

5. Peter Pan peanut butter (soy free, they use cottonseed/rapeseed oil)

6. Homemade french fries with olive oil, salt, pepper and baked in the oven

7. Stove-top fried chicken nuggets (I use Bob's All Purpose Gluten Free Flour mix and add in some garlic powder, pepper, salt, paprika and fry them on the stove top for about 2-3 mins a side in canola oil)

8. All time favorite pancakes/waffles: Buy the Gluten Free Pantry Old Fanshioned Cake and Cookie Mix ~ Make as directed (I use double water instead of milk) The double water makes the pancakes a little less "heavy" and we either make pancakes on our griddle (note: I always have to use a little canola oil on the griddle, otherwise I end up ruining pancakes) OR we make waffles in our cheapy waffle iron!

9. I've also used the above mentioned mix to make cupcakes, birthday cakes and a very yummy coffe cake.

I just checked Kinninnick's website and noticed they have a lot more than I thought they did! Like cookies! I'm going to order some stuff for my DS to try, I'm such a bad baker, the only cookies I can make are those yummy peanut butter cookies that someone already mentioned.

10. The banana bread that my son absolutely adores I make with Bob's All Purpose GF Flour and the recipie is right on the back of the bag. He is constantly asking for banana bread!

That's all I can think of for now...

I know some parents have had success at having their kids drink DariFree (it's a powered milk made from poatoes) but my son just doesn't like it. He goes milkless and I have him chew a Tums everyday for his calcium.

 

[wide awake]

I am really trying to think of what I used to cook...but, you originally asked for WDW help. I know we've bought the gfcf bars when we were going on vacation...a Canadian company, the label was French on one side, English on the other...DS would eat the entire box in about 10 minutes, and as I remember they were about $6.30/box at our local grocery store. I used Whole Foods a lot...if you check out the GFCF web site and then look at their kids snack pack...lots of the products are at Whole Foods or Trader Joes. There was a snack, better than cheese puffs...I think the name was Tings ? I didn't care for any of the packaged bread, but what I made at home wasn't bad...you'll need a heavy duty Kitchen Aide mixer for the very sticky dough though. So anyway...when we went on vacation I took Ener-G pretzels, the breakfast bars, Tings, rice crackers, cookies...then DS could have snacks besides his meals. We did the diet w/ him, no way was I eating forbidden foods in front of him or having them in our pantry. As a family we liked the Van's or Trader Joe frozen waffles, usually bought the Tinkyda rice pasta...none of us liked the Quinoa pasta...we loved Kasha...so good w/ any roast poultry or meat. I used to tell myself the diet wasn't that bad, lots of times I'd be reading Gourmet and I'd see an entire menu that needed very little tweaking...so the problem is that our kids are generally used to eating icky foods, and we feel guilty. And DS made it worse by never asking for forbidden foods...I've always been the type of mom who told him to throw whatever he wanted in the cart...it is his home too...and when he was on the diet he'd wander over and look at the candy and then come back, wouldn't say a thing...that broke my heart. Yummy things to make at home...hollandaise w/ marj instead of butter...paella type dishes...stir frys...homemade potato pancakes...chicken tacos w/ guacamole, you don't miss the cheese...baked apples or poached pears...rice puddings...pumpkin custards...rice crispy bars made w/ safe cereal and marshmallows...chips and salsa (be careful, some have gluten in them)...frito pie, again no cheese...lots of times I'd use heated corn tortillas for bread, or if I felt ambitious I'd fry at least a few for DS...something I wanted to try because I thought it would work is lefse...w/ the potato base the flour substitution might not be noticeable. You get the idea, and if the diet works than that is great... I know the first time DS was on it I noticed positive changes after two days w/o dairy. He seemed to grow out of needing the diet though, don't know if it is because of therapies or age, but his doctor did tell me that it happens fairly regularly as the kids get older. I couldn't believe it...a few days ago he had a steak and garlic bread on his plate...he ate the steak first, then the bread...and didn't want more bread...he does the same w/ dairy now, it used to be if he had either we were on a slippery slope where he HAD to have more...that is why we went back to the diet the 2nd time.

 

[dzorn]

Gotta Love Whole Foods!!!

 

[tinkertiff]

Wide Awake -- Thanks so much for your post. So much good info. I know I'll read and re-read all of your tips. On the grocery aisle --my DS did the same as yours -- Walked over to the cookies and looked at them. He actually started reading the labels and over and over again kept saying -- "no, can't have that one, no, can't have that one" [he'd see "enriched flour/wheat flour" listed]. I felt so sorry for him. Finally, I went over and said "sweetie, every one of these cookie packages have wheat flour in them". It was very sad. I told him I would have to make special things for him, etc. He seems to understand, but tonight asked for "pizza bagel bites" and Burger King chicken nuggets -- old habit die hard, I guess. He's eating, but doesn't like any of the milk subs - We've tried them all - from soy, almond milk, rice milk to Darifree. I'll probably have to add a calcium supplement. Again, so far, so good -- end of Day 5! Problem with this is he's picky and has the oral sensitivity thing going on -- I know some autistic kids who eat anything. His eating issues compound an already difficult situation trying to deal with a GFCF diet. Like -- he doesn't eat peanut butter. That MAY change as we go, but that would be a good protein for him. Doesn't like it. Tonight, he tried rice - with the butter sub (which is actually really good). Initally, he didn't like the rice, but improved over dinner. I think its a texture thing. This would be so much easier if he didn't have some of the eating issues. Guess I'm lucky he's taste testing as much as he is -- given his history. I've seen some improvement with conversational speech - hope its not my imagination . Time will tell. Again, thanks so much for your post -- I deeply appreciate it.