Need help, my daughter has Celiac disease

[erinmomof2]

My 2 year old has been having problems for a while now. Today we saw the specialist and he is pretty certain she has Celiac Disease. He is testing her, but he really thinks she has it. She also is completely off dairy with the exception of lactose free milk. She is a very picky eater so I'm kind of freaking out about what I'm going to feed her. She's lost a lot of weight already and is basically skin and bones so I want her to be able to eat more. Does anyone have kids with Celiac? I checked out the Gluten free section of the grocery store and there were only a few gluten and casein free products. Is there a better store to go to? Does Trader Joes or Whole Food sell more? What can she eat at a restaurant? I'm really worried about all this and just not really sure where to start. Just looking for someone with a similar situation.

Thanks so much.

Erin

 

[Dramamama]

Don't be too worried. Me and my brother have Celiac disease and at first it may be hard, but it gets easier. If your daughter likes noodles and such, quinoa pasta (I think that's how you spell it). It gluten free and it tastes just like regular pasta. If you go to Mc Donalds, you can still order a hamburger with no bun and they'll do it. Since your daughter is lactose intolerant, you can order it without cheese. French fries at Mc Donalds are also gluten free. If you can find a UNO pizza place, they also have a special menu that's gluten free. For treats, you can go to a grocery store and get gluten free cookies, brownies, and cakes that are gluten free. Those are the Betty Crocker brand and they taste way better than regular cookies and cakes and brownies in my opinion. Whole foods are a good place and Sprouts is a great place to get gluten free products. Most mexican places are good because they use corn tortillas but be careful of boritos because those are made with flour tortillas and those aren't gluten free. Stay away from chinese resturants because that's gluten in a building. Ask for gluten free menus because some places have them. Well known italian resteraunts like the Olive Garden might have a gluten free menu. For snacks, all doritios except for the nacho cheese ones are gluten free. All Lays potato chips are gluten free, Fritos are gluten free, and Lays in the can are gluten free. Sadly Pringles are not gluten free. I recommend a book called The GF Kid because it helps kids learn about Celiac disease and food ingredients and some places to go eat. I hope that this helps you out. A website you can go on is celiacdisease.org and they can help you with a ton of stuff. Good luck and have fun at Disney :]

 

[Mrs.Toad]

Hi Erin,

My kids don't have Celiac, but a close friend's family does (mom and both kids). They do have to be very careful of what they eat, and it can be difficult because gluten is sometimes hidden in places you wouldn't expect it, like some hard candies.

They use a website, I think it's Celiac.com, for info. It seemed overwhelming at first, but they quickly got to where they could scan the list of ingredients in most prepared foods and knew what was safe and what wasn't. Sometimes they have to call the manufacturer to be sure.

I think they get most of their gluten free products from Whole Foods. They use gluten free macaroni and Velveeta to make their own mac n cheese. She bakes her own gluten free cookies and breads (though they buy some, too.) They often just go without breads and grains, too. They'll go to McDonald's and have a cheeseburger with no bun (no chicken nuggets because of the coating). In a lunch box, instead of a sandwich, they'll just roll slices of lunch meat and cheese together and eat it like that. They eat lots of fruits and veggies. Trix cereal is now gluten free, so the kids love that.

When they go to a restaurant, they'll ask to speak with the chef, who will usually come to the table and talk to them about it, to help them decide on a regular menu item they can eat, or make something special for them. They can eat the Pad Thai at Noodles and Company, because they are rice noodles, burgers without buns at Red Robin, rice bowls at Tokyo Joe's (though I think they might bring their own sauce there, I can't remember now.)

Good luck. These kids are doing great. It's certainly an adjustment, but it's worth it. I'll see if I can get that website from her to be sure I'm right about it.

 

[chrisw127]

I really like www.glutenfreegirl.com. You might not want to cook the way she does (she's married to a chef) but she offers a lot of insight and support. We don't have wheat allergies in our house, but I like to read her because she's so upbeat--beautiful photos, too.

Good luck.

 

[sharonabe]

Elizabeth Hasselback of The View has Celiac and she, too, has written a book.

 

[tscrapper]

Whole foods has a ton of stuff here we use one in Bellevue WA. They have even recently gone to baking their own products in a dedicated bakery. They have a good selection. I don't know what kind of stores you have in Michigan but here Fred Meyer (kroger) and wal mart & win co have the best selections. Safeway, Albertsons, Trader Joes and Haggen also have small sections. Products like regular Fritos, corn chips, some Progresso soups, (have always been GF) rice chex and corn chex are both now GF and Betty Crocker has just come out with cakes, cookie and brownie mixes that are GF it has helped that in Jan of 2009 the food labeling has changed to list the seven big allergies at the end of the ingredients list some companies have been faster to comply than others. This makes label reading easier.

I hear WDW is great, in their special diets dept and Brenda Bennett is the lady to contact when it gets closer to your trip time we haven't been to WDW but I hear things are great there and they are very accommodating. The DISabilities board has more info on their thread. My hubby is celiac so I have been there a lot looking at the dining. This forum has info and the person who moderates it is a dis poster http://forums.glutenfree.com/ Hope this helps good luck take it slow PM me if you have questions.

 

[crisi]

I find Whole Foods/Trader Joes/ most Grocers, coops. etc to be uneven. One branch will carry something, the next won't. Or they'll have something for a bit than drop it. The internet is good. I have a store near me that only carries GF stuff, so its easy for me.

Udi's has the bread I like best. They are in Denver. Orgran is the pasta I like best (its rice and corn - I find quinoa pastas to be bitter. I also generally don't like things with a lot of bean flour). I've had good luck with the Pamela's and Gluten Free pantry lines as well.

 

[tscrapper]

I had forgotten you asked about restaurants I just googled celiac restaurants and Michigan and came up with this web site Celiachandbook.com and here are some places: Buca di Beppo, Carrabba’s Italian Grill, Red Robin etc I don't know where your located but there is lots of info on the web.

Tammy

 

[fortheluvofpooh]

if you have a Giant near you they have a pretty good selection of Glueten free foods. I have a friend with this and she was not diagnosed until later in life, the earlier you know the diagnosis the better.

 

[Mrs.Toad]

I asked my friend. The websites she likes are the Celiac Sprue Association. National has more general celiac info: http://www.csaceliacs.org/ and she likes the local chapter's website, because it lists local businesses who carry GF foods. Here's the website for Michigan's local chapter: http://micapitalceliacs.atspace.com/links.html

She also mentioned the GF Betty Crocker cake mixes, and said she can buy a lot now at King Soopers (Kroger in other states -- Don't know if you have those or not). If your local supermarket doesn't carry much, ask them to. If they get enough requests, they'll start carrying more products.

 

[figment41]

Hi welcome to our group.

My DD2 is allergic to wheat milk and eggs and now we can add sesame seeds peanuts and soy.

My daughter has been on purely soy milk for a year and has never had a problem so for right now we are continuing with that.

We have found Whole foods to be great. We also are starting to find a ton of gluten free foods at Walmart.

EnerG is the bread we use. They have buns crackers bread rolls and english muffins. My DD seem to be OK with them and it is what they serve for bread at WDW for allergies. We just found them at Walmart hooray!

There is also a great brand called Enjoy life. They make cookies and breakfast bars and even have chocolate candy bars that are safe.

There seems to be a lot of produsts that say Gluten free on them. Rice pasta tastes pretty close to wheat pasta but corn pasta can have a little bit of a different funky taste to it. There are many brnads now. Lundens is great and has many different shapes. Deboles seems to be pretty good too.

It seems like a lot of cereal companies are going to gluten free. Rice chex and corn chex are gluten free bu you have ot be careful with the cinnamon flavors and others because some of them have milk in them.

Ians is great company for frozen foods. They have chicken patties na dnuggets and pizza bread even mac n cheese. We have just startyed trying them and my DD seems to enjoy them.

Amys is a great company too. She makes all kinds of different yummy foods. They even have a gluten free dairy free rice crust pizza. It i hard to find but we have found them at Whole foods and my DD loves them. She is just catching on that we eat different food than her. So when we have pizza she gets pizza too.

We do a lot of label reading and it never ends. Companies change their recipes often especially when things start gettting expensive. So, we read every label everytime.

We are currrently hoping that my daughter is actually growing out of her wheat allergy but that seems to be the easiest item to avoid. Gluten free is becoming huge as it seems to be healthier for everyone. If I think of anything else I will let you know. I know it is very overwhelming in the beginning but it just becomes everyday life. You will get used to it and remember there is always something she can eat. Fruit and vegetables and grilled meat are great.

feel free to PM me if I can help you any more

 

[erinmomof2]

Thank you for your replies. I'm sure it won't be as bad as I originally thought. I'm just hoping the dairy thing gets better. From what I read dairy can usually be reintroduced once the small intestines heal. She would have a lot more food choices if the dairy thing is not an issue. We have a whole foods about 20 minutes away so I'll be checking there. Trader Joes is right near my husband's work so he'll be going there. We have Meijers and Kroger as our other grocery stores. Meijers has a decent gluten free selection, but when you throw in the dairy thing... the selection is almost nothing. I'm really going to push fruit and veggies and hope she'll do better about liking them (2 is a hard age for this I think). And she does like chicken, so she can eat that.

I did google restaurants she can eat at and it's not a lot. I found a few Italian restaurants like Carrabas, but no one in my house eats Italian so that's out. Boston Market seems to be okay for the most part. And I guess Outback has a gluten free menu, although I haven't seen exactly what it was. It's just a lot all at once. But I'm just glad we're getting answers now. She's not officially diagnosed as gluten free, the doctor just really thinks so. She has been tested and we're waiting for results. We should know for sure soon and I'm trying to be as prepared as possible to switch her diet so she'll feel better faster.

Thank you for your help. I really appreciate you taking the time to give suggestions.

Erin

 

[crisi]

Kid eating out will be hard. Its easy for me as a grownup - the veggies and meat, avoid sauces and bread. But most kids meals are pasta or breaded. Kids aren't big on salad.

Also watch for hidden gluten - soy sauce (!) You think things like Asian food would be good, but soy sauce has gluten in it. Also many things are thickened with flour.