I'm New ~ My 3 Year Old Was Just Diagnosed

[dandelionmom]

My 3 year old daughter was just diagnosed with celiac disease.

Do you have any resources, advice, or words of wisdom for me?

Thanks!

[Kibbie]

My 3 year old daughter was just diagnosed with celiac disease.

Do you have any resources, advice, or words of wisdom for me?

Thanks!

'

My daughter was 18 months when diagnosed and we have been gluten free for nearly a year now.

First of all I'd like to reassure you that in a months time you will not feel so overwhelmed and most of this will become second nature to you.

What kinds of things did she love to eat before she was diagnosed. There are alternatives for just about everything and most of us here know them So if you give me/us a list we can give you some places to start with

Kibbie

[JennyC]

First, it will get better. I know it must seem impossible right now. My son was diagnosed about 4 months ago, and he is 3 years old. I told my son that a lot of foods he likes contain gluten and it makes him sick and we have to find new foods. He adjusted well and I hope your daughter will as well. There are even books for kids. My son has "The Trouble that Jack Has" and there are others. There are many normal foods she can eat. If you search this board for "normal food" lots of topics should pop up. You also have to be careful about cross contamination. She will need her own toaster and anything that maybe difficult to clean, like pasta strainers, non-stick pans and cast iron. You can find lots of information about cross contamination if you search this forum. You also need to check non-food items, like lotion-yours and hers, sunblock, makeup, dish soap, etc. You should print off the forbidden foods list from this site and carry it with you for a while. You want to pay special attention to modified food starch, spices, natural flavors, spices, and thickeners. Remember to always check every label every time. The best policy is to stick with the companies that will list their gluten. I will attach the file at the end. You can also go to company websites or call them directly.

I'll give you a small list of my son's favorites to get you started.

Cocoa or Berry Pebbles

Trix--check the label!

Dora stars cereal

Yoplait yogurt

Lays Stax or Kettle chips

Cheeto's

Pic-Nic french fies in the snack isle

fruit snacks

String cheese

Ore-Ida French fries (they have a gluten-free list)

Classico spaghetti sauce (all are gluten-free)

Oscar Meyer lunch meat

popsicles/ice cream

Craisens/raisins

popcorn

Tinkyada pasta

Ener-G wheat free, Seattle, and Cinnamon crackers

Glutino "Ritz" crackers

Blue Diamond Nut Thins (made in a facility with wheat)

Bell & Evans chicken nuggets (Black & red package)

Glutino pretzels

Kinnikinnick pizza crusts, bagels, K-Too's (oreos)

Van's gluten-free waffles

Pamela's pancake mix

Open Original Shared Link

[celiac-mommy]

My 3 year old daughter was just diagnosed with celiac disease.

Do you have any resources, advice, or words of wisdom for me?

Thanks!

Stay away from all the pre-packaged stuff. Some of the gluten-free "stuff" has more sugar and sometimes a LOT of saturated fat to make up for the flavor that they haven't mastered.

This is my household rule to make sure they're getting their fruits and veggies: always a fruit with breakfast; a fruit and protein for snacks; veggies, starch and protein for lunches and dinners

My daughter was diagnosed just after she turned 4. For breakfast we eat things like: fresh seasonal berry pancakes (made from Pamelas baking mix--I use that for almost everything flour), eggs, veggie omlettes, chicken sausages (coscto has a lot that are all natural and gluten free), breakfast burritos (eggs, kidney beans, cheese and mild salsa), Bob's Redmill mighty tasty gluten-free hot cereal (sweeten with fruit or a bit of maple syrup). I batch cook pancakes and waffles to pop in the toaster on my work days. Hormel's new line of 'natural' deli meats and bacon are good-there are no nitrates or sulfites in them (I would NEVER give these to ANYONE--your OB tells you not to eat them when you're pregnant for a reason--then why do we feed them to our kids??)

lunch/dinner is: "tofu pasta" (i know most kids won't eat tofu-i hate it, but they LOVE this dish)-cubed xtra firm tofu saute in a little olive oil, add frozen veggies of their choice-we like chopped spinach-when veggies are cooked, add a little maranara sauce--there are so many ways to vary this dish. Grilled cheese and Pacific foods tomato soup (it's SOOO creamy), 'super' quesadillas with cheese, black beans, chicken--whatever they like-made on mission corn tortillas, homemade mac&cheese (I also batch cook this for quick meals), chicken, fish, tuna salad, steamed veggies of their choice--the sky is really the limit.

Snacks are things like apples&PB, cheese and crackers (Glutino are good), Plain yogurt with fresh berries, etc...

I know a lot of people roll their eyes at me when they see (or read) how I feed my kids. I'm not opposed to treats now and then, but an every day sugar cereal--what's that doing for them? Nothing but making them hungry in 20 minutes. Sometimes I think it's a convenience thing. Other times--not sure what people are thinking.....

It's really not that much extra work, it's just a different way of thinking about and preparing food--let them be a part of the meal planning, they might be more apt to eating their veggies if they can pick out the ones they want. I feed my kids the way that I would want them to feed their kids--it's the way my mom fed us (now my husband-that's a different story!! )

Well enough rambling--Good luck and visit often!!!

[dandelionmom]

Another thought:

How did you tell your child s/he has celiac disease? I'm at a loss.

[Belinda Meeker]

Another thought:

How did you tell your child s/he has celiac disease? I'm at a loss.

dandelionmom,

U didn't have any signs?

Hi my son had it all his life (the signs)

Just didn't know til he was 13 what it was

He had hives cotiniously as a youngster,D, asmtha,bad skin, (he was born with baby acne and so was his brothers) slept alot

As he got older and was in sports major fatigue, hives, D, very bad stomache pains then bouts of terrable D (but then another bad belly ache after the D)

He has DH too now which is itchy blisters he gets his on his hands feet knees.

The most signs I have been told is grouchyness, D, DH, tiredness, bloating, belly aches , bad skin, there r so many on each and every case so u might want to ask uder another topic

Good luck and welcome to the family !

It starts hard but gets easier

Belinda

[JennyC]

Another thought:

How did you tell your child s/he has celiac disease? I'm at a loss.

I have not yet explained that he has "celiac disease" but that talk will definitely come up long before he starts school. In his book The Trouble That Jack Has they use that term but we don't directly to him yet. He knows that gluten hurts his tummy. He is in the process of learning that gluten is wheat, barley, rye, and oats.

[dandelionmom]

U didn't have any signs?

She's always been very healthy but a picky eater. Since May she's had about 6 days where she acted almost like she had a stomach virus (but no one else got it) and she always recovered quickly. She's also been a little irritable but we blamed that on the "terrible 3s" since she never really went through the terrible 2s. She has eczema (food-linked to nuts) that has been worse lately but we didn't really think much of it because she's always had eczema. I brought her to the pediatrician because of the periodic tummy troubles. Her blood work came back today.

Thank you all for your answers! If you have any more thoughts for me, I'd really appreciate it!

[Kibbie]

Another thought:

How did you tell your child s/he has celiac disease? I'm at a loss.

My daughter was only 18 months old when she was diagnosed so we never really talked about her having "Celiac" disease. Though we do use the word.

We do talk a lot about what gluten will do to her. She knows and will tell you that if she eats gluten her "tummy will hurt" or her "tummy will feel icky" or "gluten will make her tummy sick"

In our house we have chosen to go completely gluten free however... when we eat out or if we are at other peoples houses we tell her no to the things that have gluten in them and say "I'm sorry honey that has gluten in it, it will make your tummy hurt." Now about 10 months later she can point out the obvious stuff with gluten in it!

We are currently on vacation (at my sisters house) during our 16 hour road trip we stopped at several restaurants. At one of the res truants I asked her if she wanted "ribs" or a "hamburger" pointing at the pictures on the children's menu. My daughter wanted a hamburger but when she looked at the picture she said "That has GLUTEN in it" and was nearly in tears because she knew she couldn't eat it. If you just keep talking about it she will eventually understand!

We were given "The trouble that Jack had" when she was diagnosed. I left the book at my sisters house.... her 4 year old (who does not have Celiac Disease) loves the book and understands what Celiac Disease is. So that book may be a big help to you!

[April in KC]

Hi and welcome!

What are her favorite foods, usually? Maybe we can all help by pointing out kid-friendly things you can substitute that are gluten free. Did your doc also tell you to avoid dairy for a while? You might want to - for anywhere from six weeks to six months.

What is her nut sensitivity? Is it peanuts or tree nuts? If it's peanuts, I can share ideas about gluten, milk, and peanut free foods.

If she asks about the switch in foods or says she misses something, you can ask her if she remembers her tummy aches...and say the doctor told us that certain foods were hurting your tummy. If we don't eat those foods for long enough, your tummy will have time to heal and you won't get aches, and you'll grow up very healthy. And let her know - some of the foods we try will be yummy, and some might not be so great...but I need you to help be my food taster, to let me know which ones we should keep getting and which ones we want to throw in the trash. And, if you don't mind, allow her occasionally to throw a "yucky" food in the trash - especially if you've tasted it and it's not good. Thank her for doing a great job helping you find her new foods.

I have to warn you that pulling off gluten will make her MORE sensitive to small amounts of gluten, especially until her antibody levels go down. For a little while, you may have MORE tummyaches. That part, if it happens, is going to drive you crazy. But trust her and believe her if she says her tummy hurts...and write down anything she ate so you can watch it more carefully. My six-year-old did not have many aches before being diagnosed (he did have loose stools), but afterwards he got very sensitive. Over time, it has gotten better - and we recently found out he's sensitive to soy, too, so cutting that out has really helped.

Good luck! Expect a few tears (from you more than her) - but it will be fine! At first it seemed like we couldn't find the foods, do the extra shopping trips, spend the money experimenting on things that might or might not taste good, etc. - but over time it has gotten easier. My kids got over the hump a lot faster than I did.

April

[Esther Sparhawk]

Buy Dana Korn's book, Kids With Celiac Disease. It's a life saver! It helps you plan for babysitters, school, preschool, family outings, etc...

Also, keep checking in on this web site. It offers great recipes and lots of helpful tips from experienced moms and dads.

When I first started out, I bought my daughter the crappy gluten-free breads offered at the grocery and health food stores. I just didn't think it seemed possible, on my working schedule, to bake bread. You'll find, though, that buying a mixer and making your own breads at home (Gluten Free Pantry has a tasty bread mix, and it's quick) will really make bread-eating a pleasant experience for your child.

If you can join a local celiac support group in your area, you'll find that's worth your time too, more than likely.

[claysmom]

My 3 year old daughter was just diagnosed with celiac disease.

Do you have any resources, advice, or words of wisdom for me?

Thanks!

Hi I have a 6 yr old son who is autistic and I am considering trying him on a Gluten-free Casein-free diet. So iam new too. I hope you have good luck.

[April in KC]

Hi Claysmom - welcome to the board. I hope you stick around if you try the Gluten-free Casein-free diet for your son. - April

[sillyactsue]

My nearly three year old daughter is gluten and casien sensitive. We have known since she was about 18 months. the word gluten is something she hears everyday (well, nearly) and she understands that gluten will hurt her. She knows the difference between baby wipes and alcohol wipes and that an alcohol wipe is what we use when we are out to make sure her hands have not picked up gluten or to clean a surface with to make sure it is free of gluten. If she sees something or is offered something by someone who doesn't yet get it and I tell her it has gluten she knows she can't have it and why. She is very accepting of that, so far.

Another thing you might want to consider if you have pets is putting them on gluten free foods. We changed our dog and cat food because it was so difficult to keep them from getting an occasional lick in or to keep her from picking up a piece of food or their dish.

Accidents will happen. Plan on it. A few days ago we were visiting a friend. I was in the other room and Aimee was with my friends young teenage daughter. I came to check on her and she was sitting on the floor feeding their little dog bites of dog food! You just roll with it and try to be prepared. I explained to the young girl that the dog food had gluten in it so Aimee couldn't touch it and explained to Aimee that our dog food was gluten free but theirs had gluten in it so she couldn't touch it. We had alcohol wipes on hand for just such an emergency so I washed her up in the bathroom with soap and followed up with the alcohol wipe in case we missed any gluten or in case their soap had gluten.

Crazy, ain't it?

[Nic]

Hi, my son was 4 when he was diagnosed and I explained to him that he has Celiac Disease which makes his body confused. I told him that his body thinks that wheat (gluten) is a poison and it makes him sick. He thought it was funny that his body was confused and he understood what poison was and he certainly knew what being sick was as he was so sick. Never had a problem with him understanding and he adapted to the diet very quickly. He eats a lot of the above mentioned foods but I will all that Kinnickinick makes a very good pancake mix that is both gluten free and dairy free. They also make a blueberry muffin already packaged, very good also. Ener-G foods tapioca light bread is pretty good and lower in fat than some of the others. Good luck with this new life style and keep remembering that this will all be second nature soon and your daughter will adjust. I always think, since my son was diagnosed so young, 10 years from now he won't even remember what gluteny foods taste like.

Nicole

[JennyC]

My nearly three year old daughter is gluten and casien sensitive. We have known since she was about 18 months. the word gluten is something she hears everyday (well, nearly) and she understands that gluten will hurt her. She knows the difference between baby wipes and alcohol wipes and that an alcohol wipe is what we use when we are out to make sure her hands have not picked up gluten or to clean a surface with to make sure it is free of gluten. If she sees something or is offered something by someone who doesn't yet get it and I tell her it has gluten she knows she can't have it and why. She is very accepting of that, so far.

Another thing you might want to consider if you have pets is putting them on gluten free foods. We changed our dog and cat food because it was so difficult to keep them from getting an occasional lick in or to keep her from picking up a piece of food or their dish.

Accidents will happen. Plan on it. A few days ago we were visiting a friend. I was in the other room and Aimee was with my friends young teenage daughter. I came to check on her and she was sitting on the floor feeding their little dog bites of dog food! You just roll with it and try to be prepared. I explained to the young girl that the dog food had gluten in it so Aimee couldn't touch it and explained to Aimee that our dog food was gluten free but theirs had gluten in it so she couldn't touch it. We had alcohol wipes on hand for just such an emergency so I washed her up in the bathroom with soap and followed up with the alcohol wipe in case we missed any gluten or in case their soap had gluten.

Crazy, ain't it?

I'm curious why you use alcohol wipes when there is soap and water around. Everything I know about alcohol is that it's an anti-bacterial. Gluten is not alive, it is a protein, and the best way to get rid of gluten is to use the force of scrubbing with soap and water to get it off. I'm not trying to be offensive, just wondering if you know something I don't.

[Juliet]

One of the ways, too, we explain about what our son can and cannot have is that we stress the fact that he can eat "yummy gluten free" food. I take him shopping and point out where it will say "gluten free" on a package, or if he likes the look of something but can't have it, we make a point to find something that also looks good and he can have. He was diagnosed at 2, and he's now a little over a year and a half and he's great about not eating anything other people have. He never even complains if there's an impromptu party and he doesn't have a treat he can eat. Now if I can just get him to remember to clean his hands before eating or sucking his thumb, then I'll be set!