Finally A Diagnosis!

[Guest taweavmo3]

I posted here a few months ago, and received so much support. It helped me forge on with the doctors, and persist with my theory!

First off, I LOVE our pedi GI. We weren't there five minutes when he said she looks like a celiac kid. I went into that appt. with my defenses up, ready to argue my reasons for thinking she had celiac, even when the two peds we've seen said she was fine. We had a biopsy a week later, and it came back positive. He said her duodenum was inflamed, so he took double the amount of samples he usually does.

I'm so happy I have an anwer. Now we are waiting to get Emmie, who will be 3 in two weeks, evaluated by ECI to see if she qualifies for any additional help or preschool. Just to me, she seems to be about a year behind developmentally. But, we'll see. Once we get into the diet full swing for a while, maybe she'll catch up on her own.

Now, for all of you who have been in the beginner boat.....I have a few questions! WHERE to begin?????? I've been reading and reading (finally got my 'puter fixed, which helps) and I'm just lost. Thank goodness Emmie loves rice, b/c she eats it about three times a day right now. The rice pasta didn't go over well, the corn pasta tasted a little better.

What do you do for snacks?? Anything out there that you've tried that isn't very kid friendly?

And, since we've started this diet, it seems like Emmie doesn't eat nearly as much. One day she ate hardly anything. She used to eat constantly. I'm guessing she's feeling full for the first time.....but I don't know.

Any advice or tips would be much appreciated! I can already tell a small difference in Em's face....her dark circles are fading somewhat, and she seems happier already. I think she'll be a new kid in a few months, which will make all this work totally worth it!

[KaitiUSA]

https://www.celiac.com/st_main.html?p_catid=12

I would suggest print out these lists. There is a list for safe foods for celiacs and then forbidden foods.

Brands like Kraft will not hide gluten in their ingredients. It will say on the label if it contains wheat,rye,barley,oats. There are quite a few brands that do that here in the US.

There are alot of candies that are gluten free.

Envirokidz has some really good snack bars that come in 3 flavors....berry,chocolate, and peanut butter that are delicious.

There are gluten free breads that are good as well. Kinnikinnick is a good brand that I really like. Also Foods By George has english muffins in 2 flavors(plain and cinnamon) that I (and family members that are not celiacs) love to eat.

For snacks I use Frito lay chips. They have a list of gluten free products. They also have 4 kinds that are made on a dedicated gluten free line to ensure the product is gluten free. On the Staxx chips by Lays it says "this product is naturally free of gluten" on the side which is a huge accomplishment. I also eat snickers bars alot.

There are cereals that are gluten free as well such as certain envirokidz cereals and cocoa and fruity pebbles by Post.

Good luck and if you need any help just ask

It's wonderful there was a diagnosis so early

[lbsteenwyk]

There is a thread in this forum called "A day in the life of a celiac child" which has a lot of good ideas for both meals and snacks.

Here are some snacks my 3 year old daughter likes:

Hummus (homemade) with either tortilla chips or Snyders of Hanover veggie crisps

Yogurt (yoplait or Stoneyfield)

Envirokids Krispy Rice Bars

MiDel gluten free animal cookies or chocolate chip cookies

Raisins

Peanut Butter and honey mixed together (she eats it with a spoon)

Kraft Chocolate Pudding

I also make my own gluten-free muffins which she eats with peanut butter and honey - email me if you would like the recipe.

You'll get the hang of the diet soon. There is a lot to learn; I'm still learning and my daughter has been gluten free for a year. Good Luck!

[pugsnapps]

If your child liked regular pasta's - try the Tinkyada Brown Rice Pasta. My husband can't even tell the difference in the pasta - Although, It does take a bit longer to cook.

Also, Hot Kids Sno-Crisps are a good treat.

Arrow Head Mills makes an excellent gluten-free pancake & muffin mix. All kids love smiley pancakes made w/fruit or chocolate chips (add an extra egg & extra cup of milk than the directions - otherwise it's too thick and doesn't puff up).

There's lots of fun treats out there....

[Ruth]

Congratulations on the diagnosis! You must be relieved.

Grilled cheese made with gluten-free bread is a big hit... you can't really tell the bread is "different" when it's toasted/grilled.

Also, yogurt, cheese, rice cakes, hunt's snack pack pudding, and regular fruits and veggies are great.

Foods by George makes great frozen baked items (we get them at Whole Foods)

Also, Chicken Nuggets by Welshire Kids and OreIda fries (some varieties... such as shoestring) are good. Keep a frozen batch of gluten-free brownies/cupcakes in the freezer for b-days, etc.

Keep trying the pasta... she will learn to like it. My family can't tell the difference now, but it took a few months! Try hiding it in a sauce she likes.

All the best,

Ruth

[Boojca]

Where are you? Sometimes location helps as some products are regional, and other people in your region can direct you to specific stores, etc...

My son is 3 and was diagnosed last June at 2 1/2, but that seems like ions ago. We're really become pro's at this. I'm telling you this so you do know that while it's overwhelming for you right now, it very quickly becomes "easy".

So, what do we eat? Tinkyada pasta is by far the most "real", my son eats it like it's going out of style. I haven't found a pasta sauce yet we can't use (but we stick with Prego as it's our favorite anyway) and we use the Classico alfredo sauce too (my husband can't eat tomato sauce so this is a staple). Brennan LOVES the Envirokidz rice crispy bars, especially the peanut butter and the chocolate ones. He's not into cereal, so I can't help you there. He LOVES pancakes and french toast (that I cut into sticks for him to dip in syrup) We use Pamela's mix and WOW!! I LOVE the mixes by Made By Mona. I just got my sample pack in the mail and so far have made bread and cupcakes, and I am just blown away with the quaility of these products.

I make my son "Mock McDonald's Nuggets" with a very simple recipe of ground chicken (ground turkey does NOT work) and crushed up plain potato chips. He devours these (as does anyone else eating with us)

For lunch he eats leftovers from dinner, hot dogs, sandwiches made from gluten-free bread (I have been using Bette Hagman' Tapioca Bread recipe but now that I've found Mona's mix I may have to do some experimenting on my own) and these breads are good toasted OR normal. I make a loaf, slice it, and then freeze it so it lasts a while (gluten-free bread does not keep well on the shelf)

There is a GREAT gluten-free Mainstream Products listing at www.delphiforums.com in the Celiac Disease Support Group. I belong to that message board as well as this one, and I can't say enough good things about it. If you are looking for a good list of "regular foods" your children can have, this is a great list. It also includes medications.

Feel free to contact me any time, you can email me too. I'm happy to help.

Bridget

Mom to Brennan, dx 6/01/04 at 2 1/2 years old

Georgia, VT USA