DownSyn Forum

teitei · Posted: September 06 2009, 7:21 AM Post subject: D.S., PDD and now Celiac....

Anyone else have a child with these diagnoses? Conor already has a tough time with certain food textures and with change of any kind. Now we'll need to change him to a gluten-free diet. Should be interesting!

He is 6 yrs old and just started kindergarten. Any advice on books, magazines, or Web sites would be appreciated. I already found Celiac.com and it looks like a great resource.

Thanks!
Tracey

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

momofrussell · Posted: September 06 2009, 8:38 AM Post subject:

No but I bet the root of some of the behaviors is the Celiacs. Wink

I know Dr. Capone talks about underlining medical issues with kids that have Dual DX's.

I know it can be tough, I don't know how Russell would handle a gluten free diet... but I hear once you do it and get use to it, it becomes second nature. There are more and more great cookbooks and sites devoted to Celiacs....good luck!!!!

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

teitei · Posted: September 06 2009, 9:35 AM Post subject:

Thanks for the encouragement. Your family is beautiful!

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

ecki · Posted: September 06 2009, 9:44 AM Post subject:

A lot of the biomedical autism sites have stuff on the gluten free/casein free diets (I know with celiac's you only need to do the gluten free part).

TACA has a nice section:

http://gfcf-diet.talkaboutcuringautism.org/index.htm

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Ecki

MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

Our Blog - Opposite Kids
Kayla's Story http://www.ecki.com/kayla/

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teitei · Posted: September 06 2009, 9:56 AM Post subject:

Many thanks!

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

CassiesMom · Posted: September 07 2009, 11:58 AM Post subject:

Tracey,

The gluten free diet can be challenging, but it's not too hard once you realize there are some great solutions out there. And I agree that you'll probably see some real changes in behavior. We saw the biggest jump in language development after starting the diet.

One of the coolest things about celiac disease is that we've done a lot more cooking and baking, and we all really enjoy it now. Cassie can make her own lunch and is writing a cookbook of her favorite recipes. (Sure, they may be how to make hot cocoa out of a packet or cook rice with cheese sauce, but still!)

I added some resources here: http://www.downsyn.com/phpbb2/viewtopic.php?p=454717 I hope some of those help.

_________________
Susan
Mom to Cassie
(11/10/98 DS, Partial Complex Seizures, Celiac Disease)

teitei · Posted: September 07 2009, 2:57 PM Post subject:

Thank you so much! I will check out that link. My problem with Conor is that he has always been a very picky eater and hates textures. He has been known to refuse food even when hungry just because the item is slightly different or a different brand or something. I'm afraid we'll run out of options. Ugh! He is such a stubborn little thing!

I am very excited to hear about your daughter gaining more language skills because communication has been the biggest roadblock with Conor.

Thanks for the encouragement.

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

CassiesMom · Posted: September 07 2009, 9:32 PM Post subject:

I hope that helps a bit! I'm sure it has to be a bit of a worry if he doesn't like certain textures. If he has a favorite food and you need a GF equivalent, let me know. There's almost always a GF substitute.

Is Conor's tummy upset? The reason I ask is that Cassie was never fond of cookies and cake before she was diagnosed. After a few months on the GF diet though, she suddenly started liking them (GF versions) for the first time. I've always wondered if it was just part of her development, or if the foods were making her feel sick and that's why she refused them. (She wouldn't tell us so we never knew.) Who knows if maybe Conor's picky eating was at least in part because food upset his tummy?

PM me any time if you (or anyone going through this) wants to talk about GF foods. We've been doing this for six years now, and it's really pretty easy once you get through the initial stages of finding out his favorites. I'd be happy to share stuff we've found.

Susan

_________________
Susan
Mom to Cassie
(11/10/98 DS, Partial Complex Seizures, Celiac Disease)

teitei · Posted: September 08 2009, 7:21 AM Post subject:

You know, he ate his birthday cake one time at his 1st b/d party, but that changed because he gagged on the icing's texture and he never ate it again. Then a couple years ago he started eating angel food cake, but for some reason that stopped too.

I don't know that he's had Celiac for long since he was last tested for it 6 months ago and it was fine (he gets tested once a year for that and other things as I'm sure your daughter does too).

His main foods are:

breaded fish
pancakes
toaster sticks (we tried "Ian's" and they were just awful)
waffles
chicken nuggets
pizza
spaghetti (we did find one that he eats that is GF)
garlic bread (New York Texas Garlic Toast is his all time fave; boy if only I could find something that tastes like that!)

I have to get these items to be as close to the originals as possible or he will FLIP. I anticipate a few weeks of pure hell til he adjusts. What's in my favor is he does love canned peaches, mandarins, pears and loves bananas and even mushy carrots...all good things!

I ordered a Zojirishi (sp?) bread machine and cookbook to go w/it so I can do that stuff soon. Also ordered a book that will hopefully tell me more about avoiding cross contamination in the kitchen. Do you know....do you have to use a separate pot for the GF pasta?? I know I have to get a 2nd toaster.

Thanks and I just may IM you soon! Smile

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

Karien · Posted: September 08 2009, 12:57 PM Post subject:

You can maybe try to get the books of the Gluten free goumet by Betty Hagman. We have one: the gluten free gourmet bakes bread and she has some others as well. I think it is Canadian and we struggle to get it here. but you will probably have an easier time to find it. She has some very tasty breads, so I suppose her cookie mixtures will be just the same.
Kallen hasn't been tested for Celiac, but I have 2 orther boys following a gluten free diet.
Maybe there are some of the Canadian members that has used this and can comment?
I've spoken to a lady here who develops gluten free mixtures for a SA company, and she says that is one of the best books she has come upon.
Hope this could help

_________________
Karien: happily married to Neels
Mom to Ewald (19), Eduan (16), Alvin (12) and KALLEN 6

teitei · Posted: September 08 2009, 2:25 PM Post subject:

I will look that one up on Amazon. Thank you!

_________________
Tracey Ulrich
Mom of Conor Adam with D.S. (5/6/03) & Liam Trevor (11/5/04)

mellysmom · Posted: September 09 2009, 8:53 PM Post subject:

Amazon has quite a few of Bette Hagman's Gluten Free Gourmet cookbooks. Our local library has a few. Check to see if your library has them first. ( That way you can see if you like them.) If not; Barnes and Noble should have them.

michelle

Karien · Posted: September 10 2009, 1:31 AM Post subject:

Michelle- do you use Betty Hagman's books. What do you think of them and will you recomend it? I want to get some others as well, but ir,s very expensive here in comparrison to other books, and not readily available.
Any ideas would be apreciated.

_________________
Karien: happily married to Neels
Mom to Ewald (19), Eduan (16), Alvin (12) and KALLEN 6

CassiesMom · Posted: September 10 2009, 7:43 AM Post subject:

We are such the convenience mix type parents, so we use a lot of Gluten Free Pantry and Pamela's mixes. The GF sandwich bread makes a great bread, but it does dry out very quickly. That's not bad if you're making garlic bread and french toast though, because you're soaking them in butter or batter! DH loves the French Bread mix, but I think the crust gets a little too crunchy for anything but eating it straight. We've had two bread machines with GF cycles, and both have overcooked the bread - so you may need to play with the time a bit. Whole Foods makes a great frozen bread if you're in a hurry.

For chicken nuggets, we use regular chicken pieces with potato chip coating. We use the BBQ Kettle Chips by Lay's, and they are easy to make and *so* good (though not at all healthy, darn it!). Just crunch them up, dip chicken pieces in egg/milk, and coat with the crunched up chips.

We use Pamela's quick mix for pancakes, and we don't even like regular pancakes anymore. We use those to make belgian waffles too. A friend of ours swears by Bob Mill's, but our family love's Pamela's - I guess it's a matter of taste. Keep in mind that not all syrups are GF - pure maple syrup is safe though. Van's makes pre-made GF waffles, but Cassie isn't a big fan of those. Some people love them though!

For pizza, Donato's has a crustless pizza that is labeled GF. But Cassie has had issues with it, probably from cross contamination. If you ask to talk to the manager, they can make sure it's safe. UNO's also has a GF pizza. For homemade pizza, we usually use corn tortillas, pan browned with cheese in the middle, then top it with pizza sauce and cheese, etc. For quick ones, Tostito scoops make awesome mini pizzas. Food by George has a really yummy GF frozen pizza, but it's very expensive. Sad

We've found a huge difference between GF pastas. We usually use Tinkyada in her lunches at school, because it holds up well when you reheat it. Other rice and corn pasta tends to disintegrate into little pieces. But I personally love the taste of corn pasta. Everyone I talk to seems to have a favorite with pasta, so you have to try them all.

A lot of it comes down to whether you are willing to make things yourself or not. Then you have to remember that you can try five different brands and only like one. It's a lot of trial and error!

We have GF pots and non-GF pots - and we always use old cookie sheets for anything with gluten (and have a silpada baking sheet for GF foods too) so we can keep it all separate. We use a toaster oven for our toast, and the toaster is GF. We share plates, utensils and cups, but we wash them first and stick them in the dishwasher if they've touched gluten.

Good luck, and PM me any time if you want to brainstorm ideas!

_________________
Susan
Mom to Cassie
(11/10/98 DS, Partial Complex Seizures, Celiac Disease)

mellysmom · Posted: September 11 2009, 6:03 PM Post subject:

Karien,

I have a confession to make. I have checked out the Bette Hagman books ... several times from our library. I've looked at them, but I have never tried any of the recipes. LOL!

The books LOOK great!

I told my daughter that our new mission is to go to the library; check the books out, yet again, and actually try out the recipes. Then I can tell you if the books are worth getting. Smile

I'm pretty sure there is a book there for cakes and cookies. Should I try that one first?

Michelle

Michelle

Karien · Posted: September 12 2009, 10:17 AM Post subject:

Thanks, Michelle. I would love that.
We use some of the bread and muffin recipes, but our bread machines differ from the ones you have, so it's not successful in the bread machines. So, it's a bit time consuming to bake it the ordinary way, but the breads are very tasty and it doesn't crumble and dry out as much as some gluten free breads that I've baked.
My boys are very active with sports at school and can use the extra calories of cookies!

_________________
Karien: happily married to Neels
Mom to Ewald (19), Eduan (16), Alvin (12) and KALLEN 6

mellysmom · Posted: September 12 2009, 10:24 AM Post subject:

Susan,

Your ideas for chicken nuggets are great! I would have never thought of that.

A friend of mine got creative with using crumbled gluten free cookies in place of graham crackers crumbs for pie crust.

Michelle

mellysmom · Posted: September 12 2009, 10:26 AM Post subject:

Susan,

Your ideas for chicken nuggets are great! I would have never thought of that.

A friend of mine got creative with using crumbled gluten free cookies in place of graham crackers crumbs for pie crust.

Michelle

shea01 · Posted: September 12 2009, 4:44 PM Post subject:

This website is SOOO cool, and she does gluten free for all her recipes, I believe.

http://crockpot365.blogspot.com/

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www.1familytogether.blogspot.com

CassiesMom · Posted: September 12 2009, 10:49 PM Post subject:

mellysmom wrote:

Your ideas for chicken nuggets are great!

Thanks! It was actually one of those wing-it kind of days. They are really tasty - kind of like french fries and chicken nuggets rolled into one - but not at all healthy!

I love the idea of gluten free cookies instead of graham crackers. We use an almond crust with almond meal and a little GF Pantry flour in place of graham cracker crust, but it gets really expensive. I'll definitely try this.

And Shea, that's a great site! We only use our crockpot for chili, so it would be a lot of fun to try some different things. Thanks for the resource!

_________________
Susan
Mom to Cassie
(11/10/98 DS, Partial Complex Seizures, Celiac Disease)

mellysmom · Posted: September 18 2009, 7:19 AM Post subject:

www.landolakes.com has some gluten free recipes. Just enter gluten free in the key word box. They also have a couple flour blends to try. One is for cakes and cookies. The other is for a multi grain bread.

I have been looking at the Gluten Free Gourmet Books. I think they are a nice book for someone just starting out on the GF diet. It is very informative. I just don't know how many of the recipes I'd make.

The book for Cakes and Cookies is beautiful, but full of a lot of cakes I wouldn't bake. Just give me a chocolate cake and ganache and I'm happy.

" The Gluten Free Gourmet" book, the revised Edition has more of a variety of recipes. I think I'd be more likely to use this book. It has recipes for bread, cakes, cookies,pies and pastries,fruit fancies, holiday fare, breakfast and brunch, pasta and pizza, appetizers and snacks, main dishes and casseroles and soups and chowders.

Michelle

mellysmom · Posted: September 18 2009, 7:25 AM Post subject:

www.landolakes.com has some gluten free recipes. Just enter gluten free in the key word box. They also have a couple flour blends to try. One is for cakes and cookies. The other is for a multi grain bread.

I have been looking at the Gluten Free Gourmet Books. I think they are a nice book for someone just starting out on the GF diet. It is very informative. I just don't know how many of the recipes I'd make.

The book for Cakes and Cookies is beautiful, but full of a lot of cakes I wouldn't bake. Just give me a chocolate cake and ganache and I'm happy.

" The Gluten Free Gourmet" book, the revised Edition has more of a variety of recipes. I think I'd be more likely to use this book. It has recipes for bread, cakes, cookies,pies and pastries,fruit fancies, holiday fare, breakfast and brunch, pasta and pizza, appetizers and snacks, main dishes and casseroles and soups and chowders.

Michelle