How Do I Start?

[JoyfulDancer]

Hi, I'm new here. My 5yo dd was just diagnosed with Celiac, after a positive blood test and endoscopy. I also have a 7yo and 2.5yo who are negative, and waiting on my dh's endoscopy result. We will be meeting with the Nutritionist on Wed.

I've been reading on this board, and I have to admit I'm a bit freaked out about the list of gluten-free school supplies. I didn't realize I had to worry about that!!! So just how picky do I need to be? What separate cooking, cleaning and school supplies does my dd need to have? How do I get started? Also, we have a very limited budget for groceries, and I'm worried about how I'm going to afford this?!

Thanks,

Laurie

[Jnkmnky]

You will need to get her a separate colander to drain pastas. There's no realistic way to guarentee you've cleaned the gluten out of every hole on one of those. No wooden spoons in her stuff. Cross contamination issues.

I've seen the school list stuff and haven't paid it any attention. I have my own routine. Here it is:

I inform the school, make a huge deal about it so they know it's an auto-immune disease and not an allergy. I tell them it's an auto-immune disease just like the way Rhuematoid Arthritis, Lupus, etc are. Most people know what R.A. and Lupus are, so they start paying attention at that point. I make a laminated card with my son's name on it and the words GLUTEN FREE. I ask them to put this medium sized card up on a working bullitin board to remind all parent volunteers, and substitute teachers of the grave importance of his remaining strictly gluten free. I tell each and every adult who will be working with my child that he must remain gluten free. I tell them they do NOT have my permission to feed him ANYTHING except water. I give my personal phone number to the teacher, the speech teacher, etc and tell them that if there is ever a question, call me. I give the teacher a lunchbox filled with little gluten free treats such as M&Ms, Smarties, Chocolate puddings*the kind that don't require refridgeration*, spoons, a baggie full of Gorilla Munch cereal for those "math munchy" lessons (sometimes they do work with finger foods, often Goldfish crackers, or pretzels...it's good to have a food for that on hand), stickers, etc.... I tell them that if there is a birthday in the class, let him get a pudding from his box. Parents are always bringing in treats at our school. It's a major concern. I have the teacher inform all the parents at the open house that we have a child in the class with C.D. She tells them who the child is, and who I am. Everyone is told to never give my child food or drink other than water. I also have a child who is very well informed about his disease. He's very good about telling anyone who offers him food...."NO". He has been taught that he does not have permission to accept food from anyone except me. I also attend lunch every day. Kids pass food over each other and help open containers, and grab food then give it back. It's a celiac parent's worst nightmare! I plan to make this my last year of attending. The lunch ladies know him, the cafeteria staff know him, the kids all know he can't eat gluten. It's a well oiled machine at this point.

Anyway, my point is that you don't need separate school supplies. Just bring in the treats and the knowledge. Inform, inform, inform. If people run when they see you coming, it's a good thing.

I would recommend Kinnikinnick bread for school lunches. White tapioca packs best, imo. Lightly toasted, if not just heated, to get the moisture out so it's not too sticky. Sandwiches on this bread are great. For money purposes, Kinnikinnick is great because they have fair shipping, points program, and tasty products. I know the bread is expensive. You can give your child a half a sandwich, a baggie of fresh fruit, a cheese stick, a drink and that is more than enough. Don't overfeed a celiac kid. They throw out slices of bread from a 5$$ loaf and it will drive you nuts. Tinkyada pastas pack well. I make my son "noodles with sauce" frequently. Slightly undercook the tinkyadas and pack in one of those cool hot cup thermoses you can get at Target. I also pack him Oscar Mayer hot dogs chopped up into Bushe's Baked Beans. I send in a slice of bread or some gluten free crackers. Some days it's cheese sticks and a small tupperware of spaghetti sauce. (we just gave up dairy though). Lots of fluid for your child. I find that my son needs some additional fluids during the day. I really don't know if this is because of the rice breads he eats or what. I just know he can pound down a bottle of water in record time.

If your class uses playdough, tell your teacher and child that she must wash her hands. That's all we did. We never got glutened at school due to supplies. We're entering our third school year, plus he did preschool. Stress the handwashing before lunch, too. That's all.

[jadobson]

Also, we have a very limited budget for groceries, and I'm worried about how I'm going to afford this?!

Thanks,

Laurie

<{POST_SNAPBACK}>

I fully understand the limited budget. What we have found is that it's much cheaper to make our own bread. My son has his own bread machine so that there is no worries. We bought a cheap Walmart one for around $30.00. We have a great bread book by LynnRae Ries called Delicious Gluten Free-Wheat Free Breads. Here is the link Open Original Shared Link. The book is about $17 but worth it. My son and other non-celiac folks love the basic sandwhich bread. There are many others we like too, but that reciepe is so much like real bread it's amazing. I have also found another great investment is a VitaMix Mixer with grain grinder (available on line or Costco stores occasionally). My son was young too (7 then now 11) when he was diagnosed and we have certainly gotten our money out of it as he will be at home for at least 7 more years, your daughter more than that. We buy bags of rice and grind it our selves, much, much cheaper. You can even grind beans in it for garbanzo bean flour.

Another something we were told was to save all our receipts for any of the special food mixes, like pamela pancake mix, etc. as since his food is medically necessary it is a tax write off. We have never spent enough in medical to be able to use it, but I know other people that do.

Another idea is to call manufactors of food you normally use and ask for thier gluten free list. You might be surprised that you can still buy some of the same foods you are already buying.

Good Luck,

Julie

[tarnalberry]

One way to keep the cost down is to stick with naturally gluten free foods. Sending your kid to school with snacks that are things like carrot and celery sticks and some nuts (if allowed in your school) will be cheaper and healthier than buying speciality gluten-free replacements of things like cereal and pretzles. I realize, however, that for many kids, going all the way down this path and just not buying the gluten-free replacements for normally gluten-laden things isn't an option; they don't want to stick out that much and may not be willing to adapt that far. But it's all dependent on your child. Some kids might do just fine just removing bread from their diet entirely (use tortillas for sandwhiches, or roll lunch meat (and cheese if permitted) in lettuce leaves), some resent being that different. (I don't blame them. ;-) ) That's when you want to start making your own items, like others have mentioned. Some things are easier than others (I've yet to have a muffin recipe or quick-bread recipe go south on me, but sandwhich bread is much trickier), but it requires some experimentation. That may mean that your initial food costs may go up for a while as you find out what she can have and what she likes, but may then come down as you settle into the new diet.

If your husband also tests positive, or even if he doesn't, I would encourage you to consider taking the whole house "nearly-gluten-free". That way, there is no need to cook separate meals, as food that's cooked and shared together would be gluten-free, though you might have some non-gluten-free snack items and so forth for the non-celiacs. I'm not in anyway saying you have to go this way - many people on the board have mixed kitchens and some cook two dinners (or portions of dinner - it might just be two separate pots of pasta), it's merely something to consider if you think it would help you or your daughter adjusting to the diet.

[ILOVEOMC]

Hi Joyful Dancer,

I am new too and my son was diagnosed in March of this year(now my younger daughter is voicing symptoms). We use Smuckers natural peanut butter and put in on apple slices or dip bananas in it. My son also eats gluten-free bread toasted and then put Land O'Lakes butter and cinnamon and sugar on it. The Envirokids gluten-free rice bars are a hit with my son and Fruity Pebbles and CoCOa Pebbles are gluten-free and not too pricey. Hope this helps and feel free to IM me if you want. Good Luck

[connole1056]

I think it is best to start out quite slowly. The food is expensive so going out and buying everything at once will blow your budget. In the beginning there will most likely be a lot of wasted food. It is nice to hear recommendations from other celiacs, but there is no guarantee that your child will like a particular brand just because someone else likes it. I have bought many things that people have told me were great, only to find my daughter hates them. However, as your child gets used to the diet he might like more things. Sometimes it is cheaper to make your own gluten-free food, but other times it is not. The beginning is a matter of trial and error. I wish I could tell you differently, but that was my experience. However, as my daughter got more accustomed to the diet I was able to figure out how easy it is to substitute gluten-free food for regular food. Certain foods are more expensive, but I do not spend as much now as I did in the beginning. I do find that buying from a regular supermarket is much cheaper than shopping at a health food store so I buy as little as possible at health food stores. Buying regular national brands is cheaper than buying from small companies. You can purchase a gluten-free food product guide from CSA/USA that lists many gluten-free foods. It is about $25 and is well worth it.

As far as school supplies, it is a personal call. Is your child going to take the initiative to wash his hands if he uses items that have gluten in them? If the items are not airborne, like flour, and you know your child is the type who will lean himself after coming in contact with gluten, it might be okay for him to use supplies with gluten. When my daughter was in kindergarten I sent in homemade PlayDoh and purchased gluten-free glue. Her class never used Cheerios or pasta as counting tools, so that was never a problem. It seems this would be a worry if the teacher forgets to have your child wash if the class does use these items. Another consideration is whether or not your child is a thumb-sucker. My daughter is, so it was very important she learned from a young age to wash her hands immediately after contact with gluten. It is very rare I let her touch it though, but it is an important habit to teach.

[JoyfulDancer]

Hi, thanks everyone, for your responses. They were helpful. We homeschool, so that helps a lot with worry about what goes on in class, though we still have co-op and other group activities to deal with.

I guess one thing I really need to know is how to set up my kitchen. What special utensils, pots, baking things, etc. do I need?

Thanks,

Laurie

[Guest taweavmo3]

As far as the kitchen goes, I haven't changed a whole lot of my baking/cooking supplies. I did get a new toaster for gluten free stuff, a new colander, and a new pasta spoon. Now I just cook gluten free pasta for everyone, you can't tell the difference with Tinkyada. I bought a teflon griddle to make my big batches of gluten free pancakes. I held onto all my other pots and pans, since they are stainless steel and supposed to be okay as long as they are cleaned well. Oh, I also bought a couple more baking sheets and just threw my other ones away. They were cheap enough to replace. If I am cooking in something that is questionable, I use foil.

My son still eats a few things w/gluten, and I'm having to load up my 15 month old on the stuff for future testing......SO, now I have a dedicated shelf in the pantry for glutenous food. Everything else is pretty much gluten free.

I can relate to being on a tight budget. I am a SAHM now, and I have to watch every penny. I fantasize about what yummy gluten-free stuff I can buy Emmie once I get back to work soon! We pretty much stick to just the basics at the moment. Just lots of meat, veggies, rice and potatoes. My only splurges are gluten-free waffles and the occasional batch of brownies from a mix. I used to buy the kinnikinnick pizza crusts, but we went through them really fast and that got too expensive. For snacks I buy naturally gluten-free stuff I can find at Walmart.....like yogurt, cheese, raisins, fruit, corn tortillas w/cheese, fritos, pickles, rice cakes, and popcorn.

Oh, and with it being summertime in Texas (hotter than hot) our favorite thing in the whole world right now is PHILYSWIRLS!!!!! They are popsicles that say gluten free right on the box, and they are actually very cheap. I can get a box of 12 (or 14??) for $1.97 at Walmart. They come in very kid friendly flavors. I used to buy the all natural popsicles made with juice, but my kids didn't care much for them, and I didn't care much for the price. So Philyswirls are my new favorite thing!

Good luck on your new gluten free adventure. I spent a fortune in the beginning, but I'm getting the hang of it, just four months later. Now I just have to buy a handful of things from the specialty store, and the rest comes from a regular grocery store. This board has been a lifesaver for me......it is the entire reason I think I have gotten a handle on this diet so quickly. You'll get there too!

[Jnkmnky]

Rather than a new toaster, I would suggest a toaster oven. You can use it to make pizzas as well as toast. It cleans out way better than a toaster. And saves money because you're not heating an oven up to 375 degrees. It costs way less to heat up a tiny toaster oven. And keeps the temp in the house down.