Help For Newly Diagnosed Toddler

[Kailynsmom]

I have a two year old girl who will undergo biopsy soon (blood test already done) to confirm celiac. I am totally overwhelmed. I have a general idea of the disease but it's the diet that scares me. I know to check for wheat (duh!) and Modified food starch, but what else on food labels means "no-no" for gluten-free people? I need help, please!

[Jnkmnky]

https://www.celiac.com/st_main.html?p_catid=12&sid=91hH9H1F70EKCYH-51105175115.88

This link should take you to the safe and forbidden list. When I was new, I printed it twice, stapled it together, kept one at home and one in my purse. Eventually, I needed only one at home. It's indispensible.

The safe and forbidden list should answer all your questions.

Apparently you need to call and confirm all Modified Food Starch (MFS). There is a list of companies floating around here somewhere that will be specific about the source of MFS so that when you see MFS and there is no gluteny word after it, you'll be able to trust that the MFS is gluten free. Other companies do NOT reveal the hidden gluten in their MFS. You will need to call and verify the source of the MFS to confirm it is indeed gluten free. I suggest that each time you are forced to call a company to do this, tell them companies such as Kraft are not making life difficult for those with Celiac Disease.

I have a 7 yr old boy. He was diagnosed when he was 3. His favorite foods are:

Chocolate glazed or chocolate dipped donuts from Kinnikinnick (use web site if not found in local stores. Ask health food stores to carry them for you)

Also from Kinnikinnick-- white tapicoca bread (lightly toasted for best taste. Actually, my son likes it just warmed up in the toaster and I've heard some people microwave the bread for a few seconds rather than toasting. My son was loose teeth, so he prefers the bread squishy, not toasted)

Chebe bread www.chebe.com or the gluen free mall Link here at celiac.com

Chebe is a must have in a gluten free home. You add 2 eggs, 2tbs oil, and 4tbs milk, cheese optional --then bake. It's crunchy on the outside and actually CHEWY on the inside.

We make corn dogs with Chebe, buns, garlic stick *I add Mozzerella to the mix, brush with butter and sprinkle garlic salt on top. I serve the garlic sticks with a side of spaghetti sauce and that's what my son has for Pizza night. Actually, that's what I have for Pizza night too. You can make pizza crust with chebe, sandwich buns, calzones, anything and the bread is better than any other gluten free bread product we've ever had.

Fruity Pebbles/Cocoa Pebbles by Post are gluten free

Hot dogs/bologna gluten free by oscar mayer (Your child may eat healthier than mine!)

Envirokidz cereals are a hit...Panda Puffs, Gorilla Munch, Koala Krisp.... If you can't find them, go to web site and get info, give to your store and see if they'll get them for you. Mine did!

Tinkyada pastas are the ONLY pastas we like. Others here will agree. Tinkyada has the best consistency, holds it's shape, tastes exactly like regular pasta. Other pastas are gritty, fall completely apart into mush or have an off aftertaste.

Have fun with this process. This is a huge workout for your brain!! Keeps ya young~~

[Kailynsmom]

Oh my gosh! Thank you so much. And no, my child doesn't eat much healthier...she's been living on pb &j's and mac&cheese! At least she's getting her protein right?! Thanks for the advice about MFS, I will call the companies to get more info.

THanks again!!

[Jnkmnky]

Here are some regular food store items that are gluten free....

Corn tortilla wraps are usually gluten-free and found in regular food stores. If you heat them with a little butter on each side, they soften up and have the texture of the flour tortillas. We use them for bacon, egg and cheese burritos. Add whatever your child likes. You can also use them to make tostados...is that what it's called when you put one down, layer food on top, then put another on top???? I get all the names for these meals mixed up! My son's favorite is chicken, cheese, lettuce with a side of sour cream and a side of salsa. After you heat the tostado through, you slice it into triangles. Great dinner.

Old el Paso Taco sauce is gluten free. We like tacos.

Classico sauces are gluten free - even the Creamy Alfredo cheese ones! Great over noodles or as a cream base for meals requiring one!!

Bush's Baked beans are gluten free.

Velveeta blocks of cheese for mac and cheese are gluten-free.

Chili can be prepared gluten-free, of course.

Thai Kitchen products are mostly gluten-free.

There are gluten free soup bases out there. We like Pacific Brands. I use them to flavor rices and as the base for our stews and soups. I made a killer beef stew last week with the vegetable broth. I added about two cups of water to a container of broth and let the meat and veggies simmer all day. You may have to look in the health food store for Pacific. But buy a bunch when you find them. They're good for so many recipes. Use instead of water for cooking rice and flavor it up. They probably have a web site, but I find them at my local store.

[Guest nini]

My daughter was 3 when she was diagnosed...

Envirokids cereal bars have been a huge hit

Van's makes Gluten Free frozen waffles (like Eggo's)

Philly Swirl Italian Ice and Popsicles are gluten free!

I add a vote for Tinkyada pasta as the best gluten free pasta. They even have a fun shape version just for kids.

don't forget that playdough has wheat/gluten in it, Colorations makes a wheat free gluten free playdough or you can make it yourself with gluten-free flours.

other ideas that have been a huge hit with my kid are fruit cups, yogurt tubes, smoothies, Hormel Beanies and Weanies

as early as you can get your daughter involved in the process of making her food even if she doesn't quite "get it" yet. If you start getting her to help stir mixes, or top her pizza crust or corn tortilla with cheeses and sauces... make it fun for her.

[Guest Lucy]

It is so overwhelming. My son was 2 and diagnosed 6 months ago, and I can say, that I feel like a pro already. There are always questions. Just come here and someone will answer fairly quickly. This sight has been a life line for me.

We ditto the kinkinnick bread, and post fruity and cocoa pebbles. Also organic frosted flakes and corn flakes in our health food section. My kids HATE the enviro kids brand cereal.

A banana is a filling food and rice cakes with cream cheese for breakfast.

CHEBE bread is awesome. Van's waffles (MY son like blueberry) pop in the toaster.

Brands that will ALWAYS tell you on label if there is wheat.. KRAFT, HERSHEY, GENERAL MILLS (I THINK).

Progresso creamy mushroom soup is gluten free. I use it instead of campbell cream of anything. It has big mushrooms, but in casseroles it works great.

Minute rice is a new favorite in our house. With butter and brown sugar.

I make grilled cheese with kinkinnick bread. String cheese. Bette Hagamens flour mix is awesome for baking cookies and such. (It is posted somewhere in recipe section here). Let me know and I'll email it to you if you can't find it. I won't be back until July 5.

[scaredparent]

I told to stay away from MSG (mono sodium glutimate sp?) and Maltodextrin, any thing with malt.

My son is will be 2 on Saturday and he is allegic to alot more than just normal celiac disease things. He can't have alot of fruit either. but he like rice cake, cheese, corn chips, peanut butter, and he like veggies.

I have learned alot and have learned that mistakes will happen. I found that if I intrduced only one new food a week and kept a journal. Then if he got sick I knew what it was from. It takes time but my childs health is worth every minute it takes.

Good luck and take it day by day.

[Guest Zmom]

Almost a year ago it seemed my son eas allergic to everything. He can have eggs now and finally rice. Westsoy makes a yummy rice milk which is gluten free. In tiny print I discovered rice dream is not (barley)

It seemed that all he could eat for months was hamburger (colman beef) Frozen/fresh,Alexia frozen potatoes, green beans,eggyolks,leroux golden apple sauce.

Now he can eat lamb, chebe cinnamon sticks,garlic sticks,enjoylife cinnamon crunch cereal. each new food is a celebration! dinty more stew is a new favorite.

[Kailynsmom]

Thanks to everybody!

It is overwhelming, but I wrote down the brands and the safe/notsafe lists-

Did anybody else notice that the gluten-free stuff is expensive!! I'm a single mom, so maybe I'm just being cheap, but I can't envision paying $4-5 for a loaf of bread!!

Anybody have more than one child? One without celiac disease? How do you make the celiac disease kid not feel different? SOmeone told me our whole family should go gluten-free. Anybody done that?

[Guest nini]

there are some really good recipes around for making your own gluten-free bread and there are a ton of mixes available that aren't as expensive as the pre-made loaves. However, I've found we don't go through our gluten-free bread as often as we went through non gluten-free bread prior to dx. I store mine in small freezer bags in the freezer and keep some in the fridge to always be available and just warm it in the microwave for about 30-60 seconds... So to me it's worth it to buy the pre-made loaves of gluten-free bread (our faves. are Kinnikinick and Whole Foods Gluten Free Bakehouse Sandwich Breads)

There are other ways of saving money too... One thing I do for my daughter is I'll make up big batches of her favorite gluten-free foods and pack them in the single serving glad disposable/reusable containers and I freeze them. When she wants a quick meal (mac and cheese, spaghetti, beefaroni, rice and beef or rice and chicken) I can just pull one out of the freezer, pop the lid off, microwave in the container for a minute, then transfer it to a plate or bowl , stir and microwave an additional minute or so... I do this with leftovers that have been a big hit as well...

[wclemens]

Hi,

Just want to alert those of you with little ones who need to remain gluten free that milk and dairy allergies sometimes go hand-in-hand with Celiac. My grandson Dakota and I are both intolerant of all grains, as well as all milk and dairy products, and I am allergic to egg whites and yeast as well.

Dakota started having problems at 3 weeks of age and I had him tested at home by Enterolab (the full spectrum--$378 cost). He immediately improved after removing milk and dairy, and as his primary daycare provider I never introduced forbidden foods at all. His family had Kaiser doctors do a blood test at one year which didn't show Celiac, so they now feed him all foods.

Has anyone else dealt with the blood test, endoscopy, biopsy route?

Anyway, I am now keeping him again (he is two years old) and so I'm feeding him the same foods I eat. He likes fresh fruits, peanut butter, hot dogs, gluten free cookies and cupcakes that we bake together, juice drinks, etc. I am still shuffling around getting organized with his diet again, so I am glad to read your posts. Thanks for your input! Welda Lou

[Jnkmnky]

The kinnikinnick donuts may seem expensive, but a two year old only needs half a donut. These are thick, filling donuts. So she'll get twice the donuts per bag. A half a donut, a banana and a glass of milk for breakfast should be a challenge to consume. The breads, combined with the shipping costs from Kinnikinnick seem daunting, but remember, this is her bread supply. She needs bread for sandwiches, french toast, toast. You can certainly make LESS bread meals and make each package last longer than the good old days when you could buy a loaf for .99 cents! I almost always make my 7 year old son a HALF a sandwich, with a piece of fuit or a yogurt or a cheese stick on the side. We're going dairy free, so I'll have to come up with non-speciality gluten free side orders to round out that half sandwich, but it's doable. There are french fries! I suggest you get a plain bag of gluten free flour mix. I add parsley, oregano, garlic salt, pepper and shake it up in a larger freezer bag. I use this mix to make chicken nuggets for my son. I add parmesan cheese to the mix for pork chops. This mix should be kept in your fridge or freezer to keep it frresh longer. Corn starch makes homemade gravy and thickens your sauces. When you buy cold cuts....make sure to ask the deli clerk to let you read the ingredients. Lots of cold cuts have GLUTEN! When you find the ones without gluten, write the names down. You end up looking at so much that you can't possible remember it all. This is where the safe and forbidden list in your purse comes in handy.

Gluten is in the most ridiculous places. It's in twizzlers. It's NOT in Snickers regular size, but it IS in Snickers Popables among other versions of Snickers. These are the facts that make finding gluten a continuous challenge. Peanut butter cups are gluten free, but at easter when the same company makes egg shaped peanut butter cups, they contain gluten. Never fail to check. I had to unload 60 plastic eggs at midnight to find the eggs with the freaking gluten containing peanut butter cups. My fault.

Open Original Shared Link This is a link to info about soy. I'm including it because I found it compelling enough to send me looking through all my panty products, not just the gluten free ones. A lot of gluten free products contain soy and a lot of newly diagnosed celiacs have trouble with dairy as they regrow their villi. If you fall into that category, I suggest you consider alternatives to soy milk. I know I wish I'd seen this info about soy a long time ago. We haven't had a lot of soy in our diets, but we did feed our then three year old soy milk for 9 months while his body healed from the villi damage. Just want to pass this along as I found it to be vital information.

[connole1056]

I recommend getting in touch with CSA/USA.You can call 1-877-CSA-4-CSA, www.csaceliacs.org or go to their website. This is a terrific organization for celiacs. They have a gluten-free product guide that is the absolute best! The $25 cost is well worth it. So is the yearly membership, which is $25 or $30.The group will send you some really good info for beginners. The product guide is 375 pages and lists gluten-free foods as well as diet do's and don'ts. It is great for traveling because the guide lists products available nationwide so you will be able to find brands available in all parts of the country.After doing the diet for a time, you will be more sure of yourself. In the beginning it is difficult, but you will get used to it.

[chasesparents]

My son starting his gluten-free diet 5 months ago and I have the No-No list embedded into my brain. I don't even need it anymore. Remember nothing with malt. Our dietician told us that Modified Food Starch is generally OK if the product was made in the US (supposedly they are required to use corn starch), same with Maltodextrin. BUT I've been checking with the vendors anyways just to be on the safe side. Remember with time things get SO much easier !!!!

I agree that you should call the CSA to get the $25 binder. It's worth the money. And also remember to keep all your receipts for specialty item purchases, because you can claim these things on your taxes !!

[Kailynsmom]

thanks- wow! You all have been a huge help. Helped change my perspective too.

Anybody know the name of csa's product guide? i can't find it on their website.