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Newly Diagnosed...making changes...

Discussion in 'Celiac' started by sbsmith1804, Jul 3, 2012.

  1. sbsmith1804

    sbsmith1804 Approved members

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    My DS was diagnosed on Friday with Celiac. He had the biopsy done for the confirmation. He is a type 1 diabetic as well. We meet with the nutritionist on Thursday to figure out how to manage this disease along side the diabetes. We are feeling overwhelmed and frustrated. Our Ds is 12 and has been a diabetic since 2009. Any suggestions and advice is appreciated as we start our again "New" normal!
     
  2. aklap

    aklap Approved members

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    Hi Sarah,

    Sorry to hear about the new diagnosis. On the bright side, it's best to have caught Celiac Disease now instead of years/decades down the road. Our Pastor was dx'd with T1DM about the age of 10 or 11 and was diagnosed with CD in her late 40's. As you have probably found out, there is an elevated percentage of T1D's that have CD as well.

    I would suggest finding a celiac/gluten-free support group in your area. Local support groups can be a huge source of help. Online sources of support are really great [I am involved in several :)], but having face-to-face contact and support is invaluable. For some, it can make the difference between success and failure.

    Here's a collection of groups in your state that have web pages:
    http://www.gigofecw.org/support/supportgroupwebsites/supportgroupwebsites.html#O

    There could be more support groups in your area that don't have web pages. If you want to search the national organizations look here...

    Celiac Disease Foundation Local Support: http://www.celiac.org/index.php?option=com_content&view=article&id=47&Itemid=112

    Celiac Sprue Association Chapters: http://www.csaceliacs.info/find.jsp

    Gluten Intolerance Group Branches: http://www.gluten.net/local-branches.aspx
     
    Last edited: Jul 3, 2012
  3. Jordansmom

    Jordansmom Approved members

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    Sorry about the new dx. It is a real punch to the stomach.

    My advice is don't go crazy buying special "gluten free" products. Most of it is expensive and tastes terrible. You do have to find replacements for some things, so definitely do some experimenting, but take it slow. It goes bad/stale really fast.

    Also realize that a lot of food is naturally gluten free and other foods in an everyday grocery store have been made gluten free. One thing I've noticed is that Gluten free stores can stock a lot of stuff you can get at a grocery store, but charge a lot more for it. If you"re overwhelmed and just relieved to be told that every item there is safe, you can pay a lot more.

    If you don't have a smartphone with internet, get it. Its just like carb counting in the beginning. It helps to be able to instantly look up any item that feels like a stumbling block to getting back to normal. The difference being the gluten free status of any item can change without any notice. So I like to check and then recheck that the items and restaurants we dont use often are still safe.

    Don't be afraid to stand up for your child's needs. Advocating for your child's dietary requirements can be a full time job. But its better to be firm and upfront about needs before a meal is prepared, than deal with mistakes later.

    Lastly, don't feel like you're all alone. There are so many people dealing with celiac and gluten intolerance out there. You just don't realize it until you start talking about it. And we are lucky to live in a time when there are SO MANY options for eating gluten free. I am amazed really. Even in my small town there are gluten free bakeries and stores.

    I don't know how other people manage in a house in gluten and gluten free. But I have a segregated kitchen. My daughter has her own counter, shelf on the pantry, and utensil drawer. I even went so far as to get a gluten free toaster oven and microwave for her meals. A few things you might not think of right off the bat: They need their own butter, peanut butter, jam, mayo etc. Lots of people at our house get crumbs in our butter and dip the knife into the peanut butter etc multiple times.

    Some people find it easier to change the whole household to gluten free. I can understand that choice. We didnt go that route because both of my celiac kids were dxd as young adults and the rest of my family is now pretty set in their dietary ways. I figure I will do everything in my power to support their needs while they're here. But its probably not so long that its worth upsetting the rest of the family.

    Hang in there and good luck to you as you find your way.:cwds:
     
    Last edited: Jul 3, 2012
  4. kim5798

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    In the beginning, I would say to keep it simple. Feed him things that are naturally gluten free, like fruits, vegetables, chicken, beef. I would find out if anywhere near you sells Udi's breads/rolls. The hamburger buns are great for sandwiches, and are most like bread he is used to.

    It might be helpful if you post some things that he likes to eat....we can offer suggestions for gluten free alternative.

    Sorry you had to get this on top of the diabetes. In some ways, I think the celiac is worse to deal with. The good thing is that it is much easier to find gluten free items in the stores, and easier to eat outside than it was even just a couple of years ago.
     
  5. sbsmith1804

    sbsmith1804 Approved members

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    We have started the gluten free diet. WOW!!! This is a difficult transition! I never realized how convient it was to just stop and grab something. My Ds is very active in sports so we are constantly on the go. Celiac really isn't a on the go disease! So someone mentioned that if I listed Ds favorites that you might offer up a gluten free alternative. So, his favs are tacos, pizza, and chili. Along with this I am curious of any crockpot meals that you might prepare?! Also, some fav on the go snack ideas would be fabulous!!! I greatly appreciate all the help and suggestions!
     
  6. Flutterby

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    Taco's are easy gluten free, look for the gluten free taco seasoning in your strore, most shells are gluten free. Pizza, Udi's is a great brand, most of there stuff is very good, they sell pizza crust and already made pizza. If you have an Uno's restaurant around you they do gluten free pizza, its Kaylee's favorite. Chilli, is the same as the tacos, just make sure your seasoning is gluten free... when we tacos we save the left over meat and freeze it till we're ready for chilli... Meat loaf we use gluten free bread crumbs, either bought in the store, or more typically I just save the ends of the udi's bread and make bread crumbs out of those. Chick-fil-A, if you have one around you, has gluten free fries, they are fried seperate than their chicken, but its fried in peanut oil so stay away if there are nut allergies. As for on the go restaurants we try and stick to Wendy's. They are by far the most helpful. The ones near us fry their fries seperately (Kaylee's never had an issue) and they also have baked potatoes, we alternate bake potate and fries, just in case.. and any wendy's that aren't near us, that I haven't questioned over and over, she just does a baked potatoe. Not sure if you have a red Robin near you, not exactly fast food, but their non seasoned fries are gluten free and they know have gluten free buns so he can actually have a regular meal inside a restaurant. :) Uno's that I mentioned above is also going to start having gluten free buns, but I'm not sure when that is going to start. Once place we avoid as best we can for fast food is McDonalds, their grilled chicken is dusted in wheat, they inject their FF with beef flavor which has gluten in it, and in general they just aren't helpful.

    I agree with the others above that said by regular foods that are gluten free as much as you can, your pocketbook will thank you! :) Chex cereals are all gluten free (except muligrain and wheat).. If you have an iphone, there is an app that is called fooducate, they have a special allergy verson, you can the food and it'll tell you if it has gluten in it, even if its hidden! My new best friend while shopping. :)
     
  7. kim5798

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    Corn tortillas are great...you can do tacos, quesadilla, enchilada etc. I've had someone tell me their kid eats peanut butter on a corn tortilla & rolls it up. Can't convince Danielle to try that, even though she loves peanut butter.

    Most of the McCormick seasoning packets: taco, enchilada, etc are gluten free. Chili seasonings you have to check carefully. May be easier to use separate spices & make your own chili mix. We have taken to making a "taco chili" using taco seasoning in place of a chili seasoning mix. Add extra chili powder or fresh peppers for more kick.

    Eating on the go is definitely more difficult. Start packing an icechest with fruit & other snacks. This is where the Udi's rolls will be helpful to you for sandwiches. Days of the quick drive thru are pretty much done. Helps the budget though:) Gogurt is good. You can freeze it & toss in the cooler. Danielle likes some of the Lara bars. They have very few ingredients. She especially like the peanut butter cookie flavor, cashew cookie & apple pie. Glutino has gluten free pretzels that are good. You can make up trail mix using the pretzels, nuts, dried fruit like raisins, craisins, banana chips.

    Fritos are gluten free. Cheetos too.

    Red Brick pizza has a gluten free pizza that Danielle really likes. To save $ we usually get her a pizza there & pick up one for the rest of us at Sams club.

    Do you have In & Out near you? Their fries are safe. They do not cook anything except fresh potatoes in their oil. You can order the burger "protein style" with a lettuce wrap or order a "flying dutchman" which is 2 patties with cheese, no bun.

    I have to think on the crock pot recipes. Been lazy in that dept lately! The only thing I have made in it lately is chicken soup. One thing that might help with meals is the Pacific Foods Cream of Chicken soup....good replacement for campbells in casseroles, etc. You will find it with the other soups at the market, it is packages in a box. They have other gluten free soups as well, I have tried the tomato & red pepper & I liked it. Progresso's cream of mushroom soup is gluten free too. Just always check labels because you never know when they change the recipe!

    Schar has a pizza crust that is good & I think someone mentioned the Udi's crust.

    Pamela's Baking & Pancake Mix is good. I use it as a bisquick substitute & for pancakes. You can make muffins with it & chocolate chip cookies too.

    Corn Bread is good. You can make muffins & do little sandwiches. We buy gluten free cornmeal by Arrowhead Mills for this. We made corndogs from it too. Time consuming....but gluten free! And WAAAY better than the frozen store bought kind. You can do them ahead and then re-heat in the toaster oven.
     
  8. sbsmith1804

    sbsmith1804 Approved members

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    I can't thank you all enough for the great suggestions and help!!! It's been a rough couple days making the switch. Deek finally yelled at me after I was suggesting him try hummus.... he stated that it is his choice what he eats and if he doesn't want to try it I have to stop forcing him!!! Sigh... its otherwise hasn't been too awful! Thank you again!
     
  9. Caldercup

    Caldercup Approved members

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    There's a great cookbook for gluten-free crock pot recipes:
    http://www.amazon.com/Make-It-Fast-...8&qid=1342176207&sr=8-1&keywords=cook+it+slow

    Our favorite items are:

    Pamelas flour mixes -- we love the bread mix (and our Breadman breadmaker. Nothing compares to home-made GF bread!) and think the pancake mix is absolutely awesome. It makes great waffles too!

    I like Tinkyada pastas (corn and quinoa pastas are good for mac&cheese, but we're not fans of the flavor), but wish someone would come up with a decent lasagna noodle.

    We love Udi's bagels, but not their muffins. Their hot dog buns are okay, just rather dry and styrofoam-y. (I make our hamburger buns with Pamela's, using English muffin rings to keep them in the right shape.)

    I like to make baked goods with Jules GF Flour. I've recently tried Cup4Cup from the chefs at the French Laundry, but it's expensive and Jules works just as well, IMHO. You don't need to add extra leaveners (like with some GF flours) and the crumb is pretty close to gluten-containing baked goods that I remember. (I went hog-wild and bought all the funky flours, plus a slew of Lock-n-lock containers to store them -- total waste of money. Having a good, all-purpose flour mix is worth it!)

    Schar products are generally excellent. For their rolls and bread items, they do need 5 minutes in a toaster oven to have a great texture/taste, but they are worth the effort. I'm a sucker for their chocolate hazelnut bars.


    In terms of saving money, I'm with others: eat foods that are naturally GF. Fruits, veggies, meats, beans, nuts, cheese, etc.

    For the baked good items, don't buy in bulk until you're sure they are the best item out there for your tastes. But, when it's time to buy in bulk, Amazon.com (especially with their Prime membership or using their Subscribe and Save option) usually has the best prices. For example, I buy Pamela's flours in 25-pound bags and I get to set the schedule for the next shipment, plus I save a good $15 on each order by using the Subscribe feature.


    Good luck! And keep asking questions! We're all here to help!
     
  10. Meredithsmom

    Meredithsmom Approved members

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    Take it easy and it will get easier. I thought celiac was much more difficlut than T1D. And I would go back to just T1D in a heartbeat. But for now we are making the best of things. More home cooked and baked foods, but they freeze well. Hang in there.
     

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