Toddler Just Diagnosed Today

[GFisTheWayToBe]

Hi everyone! My 4 year old daughter was just diagnosed with Celiac Disease. I'm just looking for some support, tips. This whole gluten thing is completely new to me and although I've been doing research, I'm still confused. I'm sad to say I don't know the ingredients in everything we eat. I visited a natural foods store and purchased a large amount of gluten free products, but does this change has to be gradual or immediate? Is gluten completely banned or should it just be moderated? I'm making the change with her so we will eat the same food.

I just don't know where to begin....

[rosetapper23]

Unfortunately, the change must be immediate and total--absolutely no gluten for the rest of her life (unless a vaccine or other medication finally becomes approved for treating celiac). Usually, the best way to start on a gluten-free diet is to eat only fresh, natural foods (e.g., meats, vegetables, eggs, fruits, nuts, rice, potatoes, etc.). I know it's tempting to buy gluten-free processed foods to serve as substitutes for what you normally eat, but, really, it's easier (and healthier) to simply cook foods from scratch. Over time, you'll see that you'll both no longer crave processed foods. Because xanthan gum and guar gum can sometimes upset tummies and are necessary in gluten-free baked goods, you'll see that avoiding processed foods at first is a good way to encourage healing of your daughter's gut.

[mommida]

I agree, immediate change. There is a withdrawal for some individuals. Do it all at once to make it easier, just in case.

Substitution foods processed gluten free foods at first don't taste or pass texture tests. Wait about four months before even trying them.

Keep a stash of gluten free snacks and CANDY. You never realize how many places are giving kids candy. Make sure you can swap out these offerings with something you know is safe and yummy. Seems like bad advice at first, but now that my kids are older I think it worked. They have had things replaced so consistantly, they don't seemed to get upset at social functions.

[StephanieL]

Does your DD have symptoms that are bothersome to her? If not, making the change over a few weeks isn't going to change a lot but may make it easier for you. (We discussed this with our Dr. If you are unsure if it would work for your DD you should call them to be sure they are okay with this plan!)

I chose to figure out "new" foods 3-4 per week of the staples. We were dealing with a lot more so I was researching a lot between. I was giving myself a month to do it but it only took me about 3 weeks to get the staples so that I knew my kids would have food daily. Once I got those staples down, I started adding things and experimenting. DS has been gluten-free for almost 2 years now and I am doing a lot more baking and treat like stuff now. Again, I wanted to be sure the "real" food was taken care of first.

Maybe if you list a few things that are must haves for her we can help you navigate.

[Takala]

And if you for some reason cannot tolerate the xanthan or guar gums in baked goods, put a query in the baking section and we can come up with work - arounds, like soaked chia seeds. Other times just by selecting certain flours or ingredients, or baking in a small dish, you can skip the gums.

That's great you're making the diet change with your daughter.

I will say that it's okay to purchase some fall- back, simple, gluten free items such as gluten free rice cakes, which don't go moldy or spoil quickly, can serve as a bread substitute for times when you are either in a hurry or cannot make something or the power goes out, and you shouldn't have any guilt about it. Some people also do okay with certain corn tortillas, (check the manufacturer's website and contact them if necessary) but be very careful when purchasing gluten free cornmeals, as some products can still have cross contamination because they are made in facilities which also process wheat, and will have a label that says "naturally gluten free" but they might not be. A certain small percentage of celiacs still react to oats, even if they are gluten free certified, so it is best to avoid them in the beginning. (you can feed them to somebody else who is not gluten free.... this is what I do.) Otherwise for starches you can also use potatoes, beans, rices, rice pastas, quinoa, kasha buckwheat which is a seed and not really a wheat at all, fresh corn, sweet potatoes or yams, etc, besides gluten free breads.

[GFisTheWayToBe]

Thank you so much for the feedback! Yes, she had been having problems for a while. Her stool is NEVER firm, always loose and she goes about 3 times a day. She's very smart and advanced, yet she poops herself and has no idea she even went. It's just slides out, she doesn't push it out or anything. Also, her husband hurts about 5x+ a week. She's very active(dancer, gymnast,teeball) but sometimes her stomach pain prevents her from wanting to play.

This is what I purchased: peaunt butter, bread, pizza, popsicles,chicken and cheese wraps, macaroni and cheese, organic eggs and milk(are they both gluten free always?), waffles, chips, pretzels, organic fruits and vegetables, cereal and chicken.

Is that ok to start with? She's a little picky and it was my first trip for those things, so I wasn't quite sure what to start with, but I'm open to all suggestions.

[Kelleybean]

What kinds of things does she like to eat? That might give you a starting point.

[Cara in Boston]

My son was diagnosed last year at age 6.

First, we went crazy and bought TONS of gluten-free food - things we don't even normally have in the house (cookies, junky cereal, etc.) - that didn't really work. Most of it didn't even taste that good, but if it said "GLUTEN FREE", I bought it.

Then, we concentrated on just the things that he LOVES and isn't ready to give up. We found great replacements for his sandwich bread and bagels (Udi's), pasta (ancient grains quinoa pasta), pretzels (Snyders or Glutino), and crackers (Schars). Tip: a little Nutella goes a long way when you are trying out things like plain rice cakes and gluten-free breads . . .

I figured out how to make most of our family favorites gluten-free - often it was a simple as serving it with rice instead of noodles or subbing in a different flour blend as a thickener. (I like Pamela's Mix for flour and it makes great pancakes)

After that, we started trying new stuff - most were successful. He now eats scrambled eggs for breakfast or quinoa as a hot cereal with apples and cinnamon. When we have dessert, it is usually ice cream or some kind of pudding or custard rather than brownies or cookies. Everything I cook is gluten free and our family meals are gluten free so there is nothing he needs to avoid. The two "gluten-eaters" have their own bread and cereal, but that is about it.

Rather than buy packaged gluten-free "convenience" foods, I will make a big batch of stuff (mac and cheese, meatballs, chicken nuggets, pancakes) on the weekend and freeze it in individual sized portions. It is just as quick, costs less, and is made without preservatives. I also make up homemade "packets" of things like seasoned rice (no more Middle East Rice Pilaf), and taco spice so it is quick and handy.

I always carry around a healthy snack (nuts, LARA bars, dried fruit) and a treat (m&ms, Toblerone, dove chocolate) It is surprising how often he just randomly gets offered some kind of treat and it is nice to always have something he can trade it for that is of equal "treatness". I also keep a emergency gluten-free meal in the car in case we get stuck somewhere at lunchtime. (Crackers, hummus or peanut butter packet, dried fruit, etc.)

I keep the frozen cupcakes from Whole Foods in our freezer for when he gets invited to birthday parties . . . (keep two in the freezer at his school in case someone brings in cupcakes to celebrate a birthday).

It has been a year now and I honestly don't think he misses anything. (I still get sad when I smell brick-oven pizza) When I see all the junk the other kids are eating (because they can) I am sort of thankful we no longer eat it. The whole family eats better now and we are so much more aware of what is in our food.

Word of warning - between the gluten-free processed food and all my baking experiments (trying to make perfect chocolate chip cookies) I put on a good 15 pounds in the first year. Somehow I felt guilty that he couldn't eat everything so I was baking delicious gluten-free treats every week . . . something I never did when we ate gluten. Finally came to my senses just recently.

He is handling it much better than I did. When preparing for the last party we attended, I was warning him that there would be pizza and cake and he said, "Mom, it is just food . . . I'm going to the party to have fun with my friends." Smart boy.

I got lots of great information and ideas here - this board is a great resource.

Cara

[mommytoethan]

We are in almost the exact same situation as you. My three year old son was diagnosed less than a month ago and I had (have, really) all the same questions and concerns. But to add to it my dear son ate an alarmingly small variety of foods to begin with.

Our initial supply of stuff was almost exactly the same as yours except that it also included every gluten-free chip or cookie within an approximately 15 mile radius of my house (a big supply, as I live right near NYC.)

So I'm going to give you the advice I wish someone had given me a month ago (after endoscopy, when doc said based on what he saw to start changing diet then, and before formal diagnosis):

Yes, gluten free means 100% gluten free. That is the absolute target.

But relax. If your daughter ate "processed" food before, she'll be fine with it now. It's true that baking, and otherwise cooking, from scratch is the healthiest way to go. But right now you're shooting for 100% gluten-free, not 100% perfect in every conceivable way. I just looked up and saw on my desk apx. 6 books on cooking gluten-free. So I try not to look up because it makes me nervous. That doesn't mean I haven't cooked in a month. I have, and always (to the best of my knowledge) gluten-free. But I was no chef to begin with and Ethan's definitely eaten more frozen things and yogurt than before. And bananas and almonds and raisins and even the "cereal" bars that are approximately 98% sugar. And cereal for breakfast every single morning (well, every one after scrapping the $7 little bag of "gluten-free" oatmeal I was told not to use).

I've tried everything I've bought (again, all of it, save fruit, processed). As has Ethan's 8 yo brother (always concerned, often helpful, but happy or at least willing to loudly proclaim foods "disgusting"). Some of the food is inedible. Other stuff is OK. A lot is actually good. (I'm here to tell you you don't need to bake to gain weight "sampling" - for example, try not to keep Glutino chocolate covered wafers lying around, they're excellent).

My point: Again, try to relax. I don't know the ingredients either, but I'm pretty sure I will as time goes on and I keep paying attention and trying to learn what I need to know. In the meantime he's eating Health is Wealth soy nuggets (yikes - I bought them by accident but they're good) with Annie's BBQ sauce (Ethan likes this but, well, yuck) a few times a week for dinner. And some other times he has Applegate turkey slices (with the offending outside (mystery) ring removed) as his main course. It's not perfect. I'm sure people look on with alarm.

So I wish I could bake his bread and cook all his things from scratch and the people who say this is best are definitely right. And I wish that pre-diagnosis I'd forced the variety issue more than I did. But at this moment, given what was true already at diagnosis, I'm very glad I even have the choice to feed him processed nuggets and cookies and chips because it's gluten that got to go, and without those options it wouldn't.

Good luck.

[Mom-of-Two]

It really depends on what kind of eater she is already- if she is a typical kid eater, who lives on pasta, chicken nuggets, and mac and cheese, you can find the substitutes for them to make an easy transition- Ian's chicken nuggets, Van's Waffle, Amy's rice mac and cheese (which I love by the way!!), but otherwise your basics are naturally gluten free- your cheese, yogurt (always check labels) fresh fruits and veggies, which really should be a staple in her diet anyway. Remember- make sure if the rest of you are eating gluten, to have a separate butter, mayo, peanut butter, etc so that you never dip a knife into them that has been coated in bread, and then use on your daughter's food. Very important! Squeeze tubes of condiments are great too!

My kids love Snyder gluten-free pretzels (I am currently the only celiac), but I think they prefer them to their normal pretzels!

The thing for me personaly that I have found on this journey, is that gluten-free food (boxed, etc) has no real health benefit to you. The exception maybe quiona, it is a super healthy complete protein, so if she would eat quiona pasta (I like the one made with corn, Ancient Harvest I think?) that would be a good grain replacement. But, in reality, aside from some kid friendly treats, try to make the bulk of what you are buying fresh and raw foods- meats, veggies, fruits, dairy, nuts and seeds if she likes them, nut butter, etc. When I say gluten-free foods, I am referring to processed or convenience foods- gluten-free breads, crackers, cookies, usually have lots of starch that really has no value, and the pastas and such are not fortified like traditional. Make sure her vitamin levels are checked, and you have her on a good quality daily multivitamin, with lots of Vitamin D.

You can make your own chicken fingers with fresh chicken, there are plenty of gluten-free ways to make breadcrumbs or a crispy coating for kids chicken, rather than purchase gluten-free chicken nuggets that are not that healthful anyway- not to mention, gluten-free foods can be expensive!

I made some yummy mac and cheese the other day with gluten-free pasta, you can make so many kid friendly gluten-free foods that she may love, and it may not happen overnight.

There are so many books and recipes online for gluten-free kid favorites! It takes time and practice, don't panic- just take it one step at a time!

Good Luck! My kids get tested on the 30th, and I am anxious!

[kb27]

To add to all the good advice from above...

We went gluten-free about 2 months ago when my 8-yr-old was diagnosed. One thing that helped us was to get a shopping guide (we got one from Cecelia's Marketplace). The reason I like it is that a lot of "regular" grocery items are gluten-free, so you don't have to spend all of your time (and $) in the specialty aisle.

We eat the same pasta sauce we always ate, but we have to be pickier about which flavors and we eat it with gluten-free pasta. We eat the same chicken broth, but we've had to switch brands for beef broth, etc. Rice, meat, potatoes, veggies, fruits, etc. are all fine. We never bought a lot of processed foods before, and we do cook a lot. We've switched out flours and discovered that fish breaded with corn flour is even better than with wheat flour. It hasn't been so bad.

The biggest change for me was baking, and as the baker in the household, that was a huge adjustment. We've made it a game. I have had some huge failures, but also some successes, and we've built our repertoire back up again. The boys are allowed to give me their honest opinions on my creations, which they enjoy. And the good creations have turned out really good.

[mamaupupup]

You have so many of us supporting you! I have twin daughters with Celiac Disease, we have been totally gluten-free for about a month...that is until everytime I discover lurking items--like yesterday in the back of the garage freezer, etc!!!

Note: have yourself tested asap before you totally go off gluten! I'm having an insanely difficult time finding opportunties to eat gluten so that I get accurate testing for myself!

Second note: The following is going to seem overwhelming--note that I have a highly sensitive kid so we are going overboard on removing gluten from her environment. You may not need to do all of the following, pick and choose what makes sense for you and your family.

Here is my evolving checklist (someday I'll organize it better). Copy and paste it into a word doc or similar and personalize it for yourself

- Clear gluten out of house/cars/emergency kits

- Get diagnosis in writing

- Personally send diagnosis to all doctors, dentists, and pharmacies to have on file

- Meet with nutritionist (include kids/husband/my mom)

- Inform/educate family/close friends/babysitters/school/camp/afterschool activities

- Meet with school nurse to develop 504 plan

- Read "Our Celiac Kids" book

- Figure out what to do at Grandma's house

- Deep clean kitchen

- I'm thinking of sanding/refinishing our kitchen table since it has so many grooves in it and kids got crumbs/playdoh/etc. all over it

- Get rid of playdoh

- Wash out kids play teaset

- Wash out dog dishes

- Replace dog food to be gluten-free, check dog treats

- Replace fish food

- Check medicines/otc/toothpaste

- Check soaps/hair care/lotions

- Check kids play makeup or replace

- Throw out those old sponges under the sink I keep to clean really dirty stuff

- Replace oven racks, toaster, wooden utensiles

Know that you're not alone! Hang in there!

[Minette]

Thank you everyone for this helpful information! My 6 year old daughter was just given a "probable" diagnosis last month and we're waiting for the GI appointment next week, but I'm strategizing in the meantime.

She is also an incredibly picky eater, and does not eat any naturally gluten-free foods except yogurt, brown rice, and about 6 fruits and raw veggies. So you can bet we will be buying gluten-free pasta right away!

We've tried Annie's rice mac & cheese already, because she eats the regular kind every single day for lunch, and we needed to make sure that when the great day came, we had a substitute ready that we knew she would eat. I thought it was indistinguishable from the wheat kind except that it's white -- so we promised her we'd add cheddar cheese to make it orange.

The only other suggestion I have to offer (since we haven't actually gone gluten-free yet) is... Corn Chex. I read about them here, and whaddaya know, my daughter LOVES them. It's the only gluten-free food she has greeted with enthusiasm. AND they are fortified with vitamins.

So, if all else fails, she can live for a while on Corn Chex, yogurt, brown rice, and strawberries. You could do worse.

[mamaupupup]

you have the PERFECT attitude! You'll be alright!

Thinking of you!