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How many have Celiac Disease too?

Discussion in 'Parents of Children with Type 1' started by foxa71, Apr 21, 2011.

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  1. foxa71

    foxa71 Approved members

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    My daughter was just tested and confirmed that she does have Celiac Disease. My husband and I had never heard about it until the doctor was alerted to do the endoscopy. Now we're waiting to hear from a Nutritionist with an appointment to learn more about it.

    We've done a little searching on our own, but we're finding this all so much to take in. Erin's a very picky eater, so getting new foods that she'll like will be a challenge. In addition, there's this huge cost! Even if we were able to make everything from scratch, it's still so expensive! My husband has been out of work for almost 4 years and just returned. Finances have been extremely tight. I don't know how we'll manage it.

    I tell you, this hit me so hard. I didn't feel so overwhelmed when they told me that our son was autistic. We kinda knew it already and accepted it. I didn't feel so overwhelmed when they said she had diabetes. I kind of figured it was a possibility. I was overwhelmed when we first treated her for it though. It was difficult to go through for us all, but we did it. But the news that Erin's got Celiac Disease on top of everything else threw me over the top. I spent the first night just crying. I don't know if I can handle this challenge. I know I have to because she's counting on us, but how do I?

    Any of your experiences would be appreciated.
     
  2. foxa71

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    I apologize if this post is in the wrong spot. Thanks for directing me to the right section.
     
    Last edited: Apr 21, 2011
  3. Sarah Maddie's Mom

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    I'm sorry to hear about this latest dx. :(

    It's very different I'm sure, but I was dxd last year and have been eating gf since. I know it's different for a child, but I find I buy very, very little of the high priced gf versions of normally gluten foods. You may find that it isn't as financially burdensome as you fear. Best of luck, I hope the nutritionist is a good one.:cwds:
     
  4. Judy&Alli

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    We are in the celiac camp too. Why don't you post her favorite foods and maybe we can help you. When my dd was dx'd that was the most helpful thing for me was to be able to have her favorites. I am so sorry, I too took the celiac dx harder than d. Hugs!!!
     
  5. foxa71

    foxa71 Approved members

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    It really does help to know you guys are going through the same things.

    for breakfast she usually eats Eggo Waffles with peanut butter and sugar free syrup

    for snacks she likes pretzels, popcorn, graham crackers with Nutella ...

    for lunches and dinners she only will eat chicken nuggets, bean burritos, pepperoni pizza, corn dogs, taco shell with refried beans (no meat)
     
  6. manda81

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    First off (((hugs)))

    We have 2 with Celiac, both my D & non-D son have it.

    In the beginning we were hit with that same feeling you have. Why this? How can we afford this? What are they going to eat?

    I can tell you that while it can be tricky, it's not as bad as it seems at first. I completely underestimated the naturally GF foods on the market, for one. And now, tons of companies are coming out with great GF alternatives.

    It's a lot to take in. Shoot me a PM at anytime if I can be of any help.
     
  7. Sarah Maddie's Mom

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    Are you near a Trader Joe's?
     
  8. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I do a lot of my own (very inexpensive) GF baking. I make my own chicken strips here http://glutenfreeonashoestring.com/chicken-fingers/ I make my own pizza crust, and taco shells are usually GF.

    So sorry about your daughter. It is an adjustment to make and things won't be the same as before. The Gluten Free Kitchen by Robin Ryberg and any of Bette Hagman's cookbooks are my favorites. If you can bake, making GF foods is definitely the least expensive way to go. I spend less $$ baking my own foods than I would on regular gluten products. Please post more questions as you have them.
     
  9. luluharper

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    We are also celiac. It was actually harder than diabetes for us but it does get easier. A couple of quick tips, never assume something is gluten free if it is a processed food. Plain natural fruits, veggies and meats are all gluten free. But a lot of manufacturers add gluten in during production. Also if the manufacturer also makes other foods in the same area, an otherwise gluten free food can become contaminated. Always read the label and if it doesn't say gluten free, look it up online.
    Now for some good news! Lots of things at Walmart, Kroger or your local grocery are gluten free. Walmart labels ALL of their Great Value foods. If it says gluten free, it is. If it doesn't you know that food isn't safe. Some examples of foods we feed our daughter that are well known and easy to find: Yoplait yogurt including Go-Gurt, Chex cereal (rice, corn, cinnamon, honey nut and chocolate), OreIda french fries and tator tots (only the ones that say gluten free on the bag under the nutrition facts), Hormel chili, certain types of Progressive soup (will say gluten free on the label), Cheetos, Fritos, and cool ranch Doritos (blue bag), many canned vegetables and fruits, Betty Crocker fruit snacks including fruit rollups, fruit gushers and fruit by the foot... I don't know. There are plenty more! Somethings you will have to buy specially, like bread and pasta.
    Finally there are many restaurants that now cater to gluten free eaters including Outback Steakhouse and even Olive Garden! You can look gluten free restaurants up online but always check with your local restaurant to be sure. For something cheaper, we do allow our daughter to eat Wendys chili and orange slices if we need a quick meal. As a quick disclaimer, these are things I have learned in three years of experience and things do change so it is still best to check the items out for yourself before using them. I wouldn't want to give you incorrect info, these are just things that we use. Feel free to message me if I can help with anything or you have any questions!
     
  10. lisamustac

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    Applegate farms makes a good chicken nugget and so does bell and evens. Glutenfreeda makes bean burritos,Ortega taco shells are gf.

    Let me add before you get into the expensive gf bread that udis is by far the best. They also make muffins,bagels and pizza crust.

    Liveglutenfreely.com has lots of recipes and lists all their gf products.

    Visit the celiac forum and ask away!!!
     
  11. kim5798

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    Everyone gave you good info. It is completely overwhelming at first & I agree it was tough to take on top of diabetes.

    One thing I wanted to add was to check out Angel Food Ministries http://www.angelfoodministries.com/

    they have an allery box on the menu each month & it nearly always includes chicken nuggets, breaded chicken patties, etc. for a reasonable price. There is not any application or checking if you qualify...you order and pay for the food & pick it up on the date specified. Definitely helps the budget if she likes chicken nuggets & you don't want to make them from scratch:)

    there are plenty of us with both on the forum. Ask anything you need to!
     
  12. kim5798

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    Vans makes gluten free waffles. they also have plain ones if that is what she likes--danielle likes the apple-cinnamon. They look like eggos & taste fine!
     
  13. Steff

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    We have 2 kids with Celiac one with T1D and 1 non D. The hardest part for us has been the expense but our first Celiac dx was 5 years ago so we now know what products to stay away from. Udi's is by far the best bread we have tried (all of their products are super yummy), we get the Glutino pretzels, Kinnikinnick has really good frozen waffles and donuts, we use S'Better Farms chicken tenders or I make them from scratch if I have time, we LOVE the products from Schar they have the best pizza crust, and Annie's makes GF mac & cheese that is a kid favorite around here. When I was first starting out GF I wrote down my kids favorite foods for meals and snacks then I looked for GF products that I could slip in. I started with breakfast and quickly found the frozen waffles and a cereal that they liked then I moved on to lunch then dinner. If you try to do it all at once it can be overwhelming but I understand wanting to go totally GF as soon as you can.

    I understand how overwhelming it all can be my oldest has T1D, Celiac, and autism. Sometimes it feels so unfair. My thoughts and prayers are with you and your family.
     
  14. jcanolson

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    My girls like Quaker rice cakes with pb or Nutella - especially the chocolate!

    Chicken nuggets we make with a coating of Chex cereal, a bit of corn starch and Lawry's seasoning. They are often requested by the girls' friends.
     
  15. jcanolson

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    If you have a question about a product, just call the customer service number on the packaging. You can usually get an immediate answer about the gf status of an item. I just call while going through Wal-Mart because I kept forgetting to check when I got home.
     
  16. Flutterby

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    My answers in blue above.. So sorry about the celiac dx.. we took celiac harder than d too.. My advice is try to buy as much stuff at the regular grocery store as possible.. go for the stuff that is naturally gf, like general mills chex cereals, rather than buying the 'specialty' cereals. Coco pebbles and fruity pebbles are gf, as well as the new cupcake sprinkles and marshmellow somethings (can't think of the exact name,lol).. plus post just came out with their version of the rice krispy treat, they are made with fruity and coco pebbles.. the girls love em. ALL fruit snacks are gf, and most yogurts.. Go right for Udi's breads and muffins, not even worth it to check out the others, lol.. Udi's also makes a great pizza crust. If you have an Uno's around, they have excellent gf pizza, its Kaylee's favorite.. plus if you eat in, they will (or should, you may have to remind them) charge you the $3.99 kids meal price because they don't have one on the kids menu.. Uno's is our number one restaurant because their pizza is Kaylee's favorite, she can actually eat a meal, rather than a piece of plan chicken or naked hotdog. ;)
     
  17. Flutterby

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    How do you make this?
     
  18. jcanolson

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    I've never actually measured, but I'll give you my best guesstimate.

    Marinate the chicken in egg whites for a couple hours.

    I like to use half rice Chex and half corn Chex - probably about 1.5 cups total.
    1/4 cup corn starch and 2-3 tsp Lawry seasoning. Mix all that together. Drain egg white and put chicken in a large Zip-loc bag with Chex mixture. Toss to coat. I fry them in just a bit of butter.
     
  19. Flutterby

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    Sounds yummy.. we usually get the bell and Evans.. Kaylee loves those, but I'll try these, they sound great, thanks!
     
  20. jcanolson

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    No prob. I keep meaning to make extra and try freezing them to see how they re-heat, but they always disappear.
     

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