Just Diagnosed Friday...feeling Overwhelmed!

[Amanda Thomas]

Hello, my name is Amanda. My 3 year old daughter, Kaitlyn Grace, was diagnosed Friday with Celiac. We met with a dietitian at the hospital, who offered very little help. She said to use corn tortillas, corn chips etc to help the transition. I pointed out that Kaitlyn Grace is allergic to corn as well, as she said "wow you have some challenges"

Any suggestions? I bought her the blue diamond snack crackers (the pecan ones and the almond ones) Also found frozen mini waffles. I bought Pamela's baking mix, but have no idea what to make with it. Just feeling overwhelmed at the moment!!!

Amanda

[Jestgar]

Well, always nice to have a helpful dietitian

I'm sure some parents will post better advice than I could, but I did want to welcome you to the board. It will get easier. In a lot of ways eating differently becomes more of a habit and less stressful.

I would suggest making muffins with the mix, just so you both know you can make tasty treats. Skip the bread for a while, it's pretty frustrating, and learning to eat differently is frustrating enough to start with.

[dionnek]

I love the Pamela's baking mix - I make banana bread, muffins, cookies, and pancakes with it. There are lots of recipes using it on the Pamela's website. Also, fruity pebbles and cocoa pebbles and the new boxes of Trix are gluten free (read labels - old boxes may still be on the shelf), and the new Disney Dora cereal and Mickey mouse clubhouse and Little Einsteins cereals are gluten-free - my 2 1/2 yr old loves the Dora and Little Einsteins - haven't tried the MM clubhouse yet. Although, I think all of these are corn based, so your daughter might not be able to eat them

There is a lot of rice pasta that is good - so far I've liked most brands and my daughter likes her mac n cheese with the rice pasta and velveeta - she doesn't even need to eat gluten-free but I don't cook gluten anymore and she loves my pasta! Good luck - this board is a life saver!

[Juliet]

You can make a lot with the Pamela's baking mix. Just check out their website www.pamelasproducts.com for lots of recipes. Almost all are good.

And if you found waffles she can eat, you can make things like peanut butter sandwiches with them, too. Also, you can make roll ups with cheese and sandwich meat - my son loves them. There's also a couple of good recipe books for kids with multiple allergies (I can't remember the name of one that I got, but it had a recipe for cheese crackers using only rice flour). It's tough at first; we've all been there! But you will adjust, I promise!

[ptkds]

First of all, take a deep breath! I know exactly how you feel. 2 of my dd's and I were all diagnosed with celiac disease a few months ago. First thing you should do is go to a local book store, library, or amazon .com and get you some cook books. I LOVE the Bette Hagman books. I havn't had a recipe fail yet. Bookmark all your favorite gluten-free websites online so you can find them again later. I have a notebook that I keep handy. I have a list of all the forbidden ingredients (printed up from www.celiac.com). I keep other things in it, too, like safe foods from some restaurants. I also have a bunch of recipes in it that I have found online. I don't keep the ones that the family doesn't like. We bought a waffle maker because the store-bought waffles tasted like cardboard.

Be prepared to spend money, especially at first. My whole house is gluten-free (it is alot easier), so we had to replace some of our kitchen things. I bought a Pro600 KitchenAid stand mixer so I could make my own bread (store-bought gluten-free bread is nasty and expensive). To save money, I go to an Asian store to get rice flour, potato starch, tapioca starch, and rice noodles. The Gluten-Free Pantry has some wonderful mixes. I LOVE their sandwich bread mix and muffin mix. Also, Walmart brand products state on the label if they are gluten free. If a walmart brand product doesn't say GLUTEN-FREE, I don't buy it.

Anyway, those are some of the thing I can come up with off the top of my head right now. I know that lots of other ppl will help you out. This board is wonderful and has helped me out so much.

good luck!

ptkds

[JennyC]

I would suggest going to some online gluten free food stores to get an idea of what's out there. It seems impossible in the beginning, but I'm 5 weeks into it with my son and it's beginning to seem pretty normal. I like gluten free.com. There are many products made from rice and tapioca flour. Kinnikinik (sp?) has some very good products. Many like their white sandwich bread, my son likes Energ-y tapioca light bread. One of my son's favorite snacks is peanut butter toast. It's really tough in the beginning. It will get easier, very quickly. In a couple of weeks you will have the new diet pretty much down. Remember to be mindful of cross-contamination. There have been many recent posts on the subject, just perform a search for it.

Don't hesitate to post any question. The people of this message board are great.

[Amanda Thomas]

Thank you for all the wonderful responses! I really think I just felt so overwhelmed on Friday, relieved to finally have an answer, but then it just seemed like we hit a brick wall!!! I spent the weekend cleaning and getting Kaitlyn Grace her own shelves in the pantry, do I need to change her dishes out? All weekend she's been eating off paper plates I got her own jar of peanut butter, she LOVES the Van's waffles. I was happy to find some things at Kroger.

[Guest lorlyn]

Hi Amanda, just wanted to say hi and welcome to the board. My 10 year old daughter was diagnoised 6 months ago and we are finally getting adjusted. There was one thing I wanted to share with you was the Blue Diamond snack crackers are produced in a facility that also makes wheat products. My husband has celiac and he was eating these crackers last night and I was reading the box and saw that. I was surprised because on the front of the box it says "Proud Sponser of the Celiac Disease Foundation". I just assumed they were safe as I have read here a lot of people want eat products that are made in a place that has wheat in it due to CC. I just wanted to let you know. Hope everything goes well for your daughter.

[Juliet]

So far my son hasn't had any problems with cross contamination from that particular brand of rice crackers. Depending on the facility, the separation within the factory (as long as they're not sharing machines) is often (but not always as we have seen by the reactions some of the people on this board have experienced) pretty good so that the products made with gluten free ingredients are safe.

I just hope that the enzyme and/or vaccination therapy works as well as it seems to be right now and that it is available soon so that all these cross contamination issues at least will no longer be a problem. Even when you feel like you've got this diet down, a mistake happens or your child doesn't wash his hands well enough after playing at the playground before eating, etc. It is the most frustrating aspect of this diet! But at least for us, most of the time we have the cross contamination issues under control. To make that easier for us, we decided to keep our kitchen and house gluten free and rarely go out to eat. And when we do, we always bring his food, clean off whatever table (and chair since he's only 3 1/2 and likes to put his utensils right next to him on the chair) he's eating at, wash his hands thoroughly, and only let people touch his food if they themselves have clean hands. We even do this when we go over to another person's house.

And despite how crazy this sounds, we're actually used to it. It only becomes apparent how "crazy" this seems to others when I get around my own parents since they really don't have any patience for it. Restaurants, friends, my son's friends and their parents, people at the grocery store who ask about why we are buying so many things that are "gluten free", and everyone else we have met so far have all been more than accommodating and helpful.

[Izak's Mom]

I just hope that the enzyme and/or vaccination therapy works as well as it seems to be right now and that it is available soon so that all these cross contamination issues at least will no longer be a problem.

what's this?

[Lisa]

what's this?

Good Question!

[Guhlia]

At www.shopbydiet.com you can search using multiple allergens. I believe corn is one of them and I know for sure gluten is. That's where I do most of my online shopping. Also, Kinnikinnick.com has their foods color coded as to what's in them, corn is one of the ingredients it is coded for, everything there is gluten free and made in a gluten free facility. Their flours are awesome! Their baked goods are great too. They have a few breads that are corn free as well as some ginger snap cookies, brownies, and probably lots of other stuff too. They have flat rate shipping of $10 for the US, so if you place an order, stock up or try lots of different things. Once your daughter figures out what she likes, you'll actually save money shopping there. Shopbydiet has free shipping for orders over $100.

Also, don't forget that a lot of things that kids generally love are naturally gluten free like fruits, some cheese, some nuts, etc.

[JennyC]

Thank you for all the wonderful responses! I really think I just felt so overwhelmed on Friday, relieved to finally have an answer, but then it just seemed like we hit a brick wall!!! I spent the weekend cleaning and getting Kaitlyn Grace her own shelves in the pantry, do I need to change her dishes out? All weekend she's been eating off paper plates I got her own jar of peanut butter, she LOVES the Van's waffles. I was happy to find some things at Kroger.

I got rid of all my son's plastic bowls and plates. Anything that is typically hard to clean (strainers, sifters, baking pans with square corners), or is scratched/really old (anything wood or plastic), or anything porous (wood or cast-iron). I also got a new toaster.

[Juliet]

In the US, there's human testing going on right now on an enzyme combination/cocktail that seems to allow gluten to be ingested by someone who has Celiac Disease. One of the areas where they were doing the testing was in San Diego, and my cousin's friend was actually involved and told her he was doing great. There've been articles on this subject, even in Scientific America a few months ago. I just Googled "enzyme celiac disease" and got several links on it, but here's one to start

Open Original Shared Link

At the very least, they think it may help with cross contamination.

Also, in Australia they've been testing a vaccine that targets people with Celiac Disease who have the common HLA-DQ2 gene. This started back a few years ago, so it's a little difficult to read up on all the latest info, but I found articles when I Googled it, too, just now. Supposedly, they're looking at vaccinating someone with the disease so that for at least about 5 years, possibly 10, they can eat gluten like anyone else. Plus, from first hand account, I heard from someone who attended the CDF Conference in Los Angeles last year talk a bit more about it and said that researchers were telling her that they thought it would be out in ten years or less. I personally plan on attending this conference this year in May and hope to hear more about both of these items.

[Juliet]

Also, forgot to mention that the enzyme combination is being fast tracked in the US, so that could mean anywhere from 2-5 years it will be available if all goes well in the human testing phase.

[Chancer7]

We found out about our daughter has celiac disease about a month ago and I remember the very same feeling that you are experiencing just now....but it really does get easier.

For breakfasts we will do scambled eggs and 1/2 gluten-free english muffin, or gluten-free rice crispies with some friuty pebbles added to it for taste and color or fruit and yog, gluten-free waffles with maple syrup, homemade GP panackes with sliced banana with chos chips. ............for lunch we do grilled cheese muffin, gluten-free pretzels, fresh friut of her choice. Snacks are endless......peanut butter and celary, PB and apple, gluten-free cookies, rasins, popcorn, gogurts, fresh fruit, cheese, cereal bars, yogurts rasins. For dinners i usually include her on making the decsions.......Annies Man n ch gluten-free is great, we will add all beef Oscar mayer hot dogs, homemade gluten-free pizza, homemade chicken tenders, meatballs, fich sticks, grilled meat. Wal-mart suff Great Value lable their stuff very well. Spaggetti sauce, alfrado sauce, pizza sauce, vans waflls gluten-free. I hope this list helps, and try and look at this like it will benifit you daghterin the long run, she will be a healthier and happy girl in the long run.

When in doubt call the companies and ask them. Good luck !