20 Month Old Just Diagnosed With Celiac Disease-So Many Questions

[tls1914]

My 20 month old daughter has just been diagnosed with Celiac Disease, and I know nothing about living Gluten Free. We found out last Friday, and we started her on the diet right away that afternoon. Before this, she had been vomiting at least twice a day on and off (mostly on) for around two months. Doc first thought it was due to ear infections, but still vomited after infection was gone. Once we started her on the diet, the change seemed to be almost instantaneous. Last night was the first night she didn't vomit. This morning she woke up, and seemed in the best mood she's ever been. I thought we were in the clear. Then around 3pm, she vomited again, and again around 8:30pm. My hopes went down the tubes. She had Jello, a hot dog (no bun), and Gerber strawberry yogurt mostly today. Yesterday, she had chicken and strawberries. She's also munched on Gluten Free Chex cereal both days. Was it something maybe she ate today, or am I jumping the gun and the healing process will take a little time? I'm so frustrated, and I'm sure she is as well. Help!!

[Lori2]

When my son was a baby he was diagnosed as celiac with diarrhea as his main symptom. He lived for two years on bananas, rice cereal, lamb and soy milk. He could not tolerate jello--I don't know why. After two years he "outgrew" it and has eaten a normal diet for many years with no symptoms. Dr. Peter Green states in his book that you do not outgrow celiac. I am trying to get him to be retested to see if he is a silent celiac or if he was misdiagnosed years ago.

[Googles]

Last night was the first night she didn't vomit. This morning she woke up, and seemed in the best mood she's ever been. I thought we were in the clear. Then around 3pm, she vomited again, and again around 8:30pm. My hopes went down the tubes. She had Jello, a hot dog (no bun), and Gerber strawberry yogurt mostly today. Yesterday, she had chicken and strawberries. She's also munched on Gluten Free Chex cereal both days. Was it something maybe she ate today, or am I jumping the gun and the healing process will take a little time? I'm so frustrated, and I'm sure she is as well. Help!!

Hello,

There are a couple of things.

1. Healing can take time, and so there can be ups and downs during it. You haven't been at it very long, so you will have to be patient.

2. What have you done done to make sure your home (or at least what you are going to use to cook her food) is gluten free? Have you been using scratched dishes/cookware, plastic utensils/cooking spoons etc/ wooden cutting boards? These things will all hold gluten and that can come out when you are cooking and cause cross contamination. (getting gluten in your food without having food that has it as an ingredient in it.)

3. When you gave your daughter the hotdog, were you making some for others and holding hotdog buns when you were doing this? That could cause cross contamination.

4. Was there any coatings on the chicken or was it plain, was it cooked on a pan that has previously cooked something w/ gluten on it?

5. Had people put their hands in the box of cereal previously after touching food w/ gluten, or was it a new box?

6. Did you wash your hands before you cooked her food after touching anything with gluten?

These are the things that comes to mind right away as ways that gluten could have gotten into her food.

I would definitely get books to read up on this. I did that when I was first diagnosed. It helped a lot.

[sb2178]

There have also been discussions of other contamination issues with kids:

1) cleaning out all crannnies and nooks of car seats, high chairs, toy, passifiers, books, etc that baby or mom may have handled after passing out cherrios or teething biscuits.

2) siblings sharing food.

3) thorough vaccuming and wiping down floors and such, as baby crawls along and gets crumbs, dust, and such all over herself. She'll stick her hands in her mouth all the time, so at that age you can't even just be careful by scrubbing her down before eating.

4) flour? no more baking gluten foods in the house. it gets airborne and will settle on other items (see 1 & 3)

It takes a certain amount of paranoia. And healing takes time too. Yorgurt could easily be a problem for a while, so I might avoid dairy for a few months and then introduce it carefully.

[mommida]

20 months old you have to even watch pet food!

Check your toothpaste and hygeine problems like your hand lotion.

Keep a food journal too. There can be secondary intolerances right now from the gut damage.

[Jungle]

You are on your way to helping your child be healthy. The first few weeks can be tough finding out what she can eat and how to make that work in your household. As said by other posters the healing can take time.

When I was first beginning by Gluten Free life I kept in the back of my mind that this was a progression. At first you make mistakes but surely it is better than the diet we had before we knew. Thinking you will be able to be 100% gluten-free right in the beginning is being to hard on your self. Removing the first 90% of gluten from your diet is easy. The last 10% is hiding or cross contaminated and thus harder to find.

[mommida]

Keeping a food journal helped find a cross-contaminated bottle of vanilla.

My son was able to eat carrots without vomitting after a year on the gluten free diet.

When the kids are that young they will not understand exactly why they can not have random treats that people are always offering. Keep a trade/snack bag with you. It will help transition to the understanding of "it is just the food isn't safe for me to eat, not that I am being punished for something". It will also help you not to panick when you are out and your child is getting tired and hungry because things are taking longer than you expected.

I know a lot of people suggest Bell and Evans chicken nuggets, but they can be hard to find. I suggest you make your own chicken nuggets by using mashed potato chips and baking in the oven. (not healthy, but they taste awesome and are cheaper than any processed gluten free versions out there.

If she is still vommitting a lot go back to the doctor. There are some of the same symptoms of Celiac that are masking another problem. (some have known associations with Celiac)

[sandsurfgirl]

She's too little now to notice if she's not eating what other kids eat, but as she gets older you will want to keep treats on hand for doing stuff with other kids.

I always have Betty Crocker gluten free yellow and chocolate cake mixes on hand so I can whip up some cupcakes for a birthday party or other event. I always keep a can of frosting in my cupboard too. Regular jar frosting is generally gluten free but read lables of course.

I also keep Glutino Oreos on hand to grab.

So many kid functions involve pizza so I keep frozen little gluten free pizzas around and I also always have Gluten Free Pantry French Bread and Pizza Crust mix in the pantry. I order it on that website we can't mention in bulk. i also keep mozzarella cheese in the freezer and sauce in the cupboard.

As a matter of fact we were at my neighbor's house and they decided to order pizza. My non celiac daughter was goin to eat with them and my celiac 7 year old started to cry because he was left out. So I ran home, whipped up my Gluten Free Pantry pizza crust and popped it in the oven. Within 20 minutes we had fresh baked pizza and I brought it over to the neighbor's house. They liked our pizza better!!!! LOL

I also keep Kinnikinnick animal crackers and graham crackers on hand too.

Just always keep the pantry stocked with easy treats because there are so many times something comes up and you need a treat so your kid won't be left out.

I made gluten free cupcakes for cub scouts for my son's birthday. Another boy is also allergic to eggs and dairy so the parents told me don't worry about providing for him. I figured they would make him something but they just sent him with some yucky bar thingy. The poor kid looked so sad being left out. My son never gets sad like that because I match whatever they are serving and make it "normal" for him.

You are a long way off from this, so save this post for the future. LOL

It sucks for your kid to have celiac but it is doable. Hang in there and read these forums as much as you can.

[Upsidedownmuffin]

My 17 month old has Celiac disease as do I.

She eats Nature's Path products - Whole O's and Crispy Rice Open Original Shared Link

For Grains with meals she eats Quinoa, and white and brown rice. She also occasionally eats Kamut in puff form.

My daughter is also allergic to milk and eggs which caused a lot of stomach upset for her. She currently drinks goat milk which she seems to digest much better.

Did you check the ingredients on the hot dog?! I have searched high and low for gluten free hot dogs! They almost always contain gluten in one form or another.

[kareng]

My 17 month old has Celiac disease as do I.

She eats Nature's Path products - Whole O's and Crispy Rice Open Original Shared Link

For Grains with meals she eats Quinoa, and white and brown rice. She also occasionally eats Kamut in puff form.

My daughter is also allergic to milk and eggs which caused a lot of stomach upset for her. She currently drinks goat milk which she seems to digest much better.

Did you check the ingredients on the hot dog?! I have searched high and low for gluten free hot dogs! They almost always contain gluten in one form or another.

Here in the US, almost, if not all hot dogs are gluten-free. don't know about CF(milk).

Remembered you said you are in CAnada. Just had The Great Canadian Hot Dog Discussion of 2011.

[Poppi]

One other question ... are you still breastfeeding? I believe gluten can come through breastmilk so if she is still nursing you would need to be gluten free.

[Upsidedownmuffin]

Here in the US, almost, if not all hot dogs are gluten-free. don't know about CF(milk).

Remembered you said you are in CAnada. Just had The Great Canadian Hot Dog Discussion of 2011.

Sorry for trying to help. I'm new to the board today and I wasn't aware of the great Canadian Hot Dog Discussion of 2011.

[psawyer]

I live in Canada, and can say that hot dogs with wheat as an ingredient are not at all common. Shared facility advisories ("may contain traces of") appear on some brands.

[sandsurfgirl]

My 17 month old has Celiac disease as do I.

She eats Nature's Path products - Whole O's and Crispy Rice Open Original Shared Link

For Grains with meals she eats Quinoa, and white and brown rice. She also occasionally eats Kamut in puff form.

My daughter is also allergic to milk and eggs which caused a lot of stomach upset for her. She currently drinks goat milk which she seems to digest much better.

Did you check the ingredients on the hot dog?! I have searched high and low for gluten free hot dogs! They almost always contain gluten in one form or another.

I've never seen gluten in a hot dog.

Isn't Kamut a form of wheat? I thought Kamut was not safe.

[mushroom]

Yes, Kamut is a relative of durum wheat - not safe!!!

[tls1914]

One other question ... are you still breastfeeding? I believe gluten can come through breastmilk so if she is still nursing you would need to be gluten free.

No, I'm not.

[csb]

You can not "outgrow" celiac disease. I was diagnosed with celiac as a 2 year old as a result of failure to thrive but got back on a regular diet. I did not really suffer from anything you can attribute to celiac. As a result of infertility I got checked again and am now back on a gluten free diet.

[kareng]

You don't outgrow Celiac. Probably depends on how the child was diagnosed. Maybe it wasn't Celiac. If there were positive antibodies, it likely was Celiac. If it was a " don't eat it & see if you feel better" approach, then maybe they can now digest gluten.

I know a couple of people diagnosed many years ago ( 40-50). They seem to have outgrown it. It probably wasn't really celiac. One of them seemed to be an allergy to several foods that he was able to eat as an older teen.