Kraft gets an A for effort.

One thing you realize quickly when you eliminate something from your kid's diet is you're not exactly sure which foods you can trust. Gluten is hidden in many things. And you don't see the word "gluten" obviously written in the ingredient list. And just looking for wheat, rye, oats and barley would be too simple. Sometimes it's hidden in the simplest words like malt or powder. So I have been calling lots of 800 numbers lately. Everything the kids normally eat I have called --unless it already says "gluten free." If I don't see those words, I don't trust it.

Some other tricky gluten-filled words include: graham flour, kasha, wheat germ, bran, bulgar, tritcale, kamut, spelt or mir.

One company that has been very helpful has been Kraft. I called them about turkey and cottage cheese (believe it or not many of these have gluten) and they were helpful on the phone and sent me some information.

Kraft is making my life easier. For this I am surprised and thankful. On their ingredients list they actually always list things in an easier way. For instance, when they say "natural flavor" they may say "contains soy and barley" in parenthesis. As with many companies, they can't say "gluten-free" unless the product is manufactured in a gluten-free facility. I dont' mind gluten being in the facility because for us it's not like a life or death allergy. But I have had to make many calls to determine what is safe for my kids. And I write with a sharpie on everything. This makes it much easier if I am not home or a babysitter is here.

We are 10 days in. It's not easy and I have seen zero changes. But we're getting through it. And we'll continue until the first week of April.

emotional.

ok, this is hard.

It's been a week. Reese cries a lot and wants the foods she loves. She misses her cereal bars and her PB & J sandwiches. The bread is not the same.

Noah has been better about the adjustment, but is definitely eating less. This is tough because as it is we can see his ribs. He needs to gain weight! I am debating on keeping him on this diet. Reese has to be, but Noah doesn't. Time will tell.

I have been really sensitive about what is in the house. If the kids can't have it I think twice about buying it and having it around. It's not fair to the kids--especially Reese who always asks for these things.

Damn the gluten!

For the Record.

Okay, when you hear "gluten free" you panic. At least I did. And then you run, not walk, to the grocery store and that isle that has all the natural foods. You quickly scan everything looking for the words "gluten free." And then frustration sets in. Because the reality of it is that these foods are different and some weird and you know deep down your kids will never go for this. But what you forget is that many, many foods are already gluten free without those words being written on the package. It's a matter of knowing what these are, reading tons of labels and sifting through the jargon. Here are my most recent finds (many thanks to my friend Andrea):

-popcorn
-plain corn chips
-tortilla chips
-KIX
-Corn chex
-Hebrew National Hot Dogs (many hot dogs have gluten)
-Ruffles plain potato chips
-All fruit in the fresh fruit section!
-canned fruit in light syrup
-Fresh and frozen veggies (no sauces)
-organic hard cheeses and some soft cheeses (mostly organic)
-Zone Perfect Bars (choc. peanut butter)
-applesauce
-eggs!
-rice
-chicken (and most/all organic meats)
-potatoes (but not all french fries)

I am still learning, but this is a start.

Today was a better day and I'm thankful for that.

Day 2

I spent so much of my day today on the phone with different companies. I have learned that if it doesn't say "gluten free" then don't trust it! KraftFoods was difficult! They read this generic thing from a script when you ask them about gluten. It was something like "if the ingredients on the package read wheat, barley, oat, etc. then it has gluten." No kidding!! So I finally got to talk to the right people figured out that most of what I questioned did not have gluten. Thankfully Reese ate a little more today. She subbed applesauce as a side where she would normally eat some bread. I was thrilled that she ate SOMETHING.

A couple products I recently learned are gluten free:

-Pediasure
-Kraft/ Oscar Meyer Natural Roasted Turkey cold cuts
-Popcorn and corn chips (corn is safe!)-- but the corn chips have to be plain. Look at the ingredient list on BBQ corn chips compared to plain. It's crazy!
-Most cheeses although some soft cheeses (cottage or cream) have gluten. This can vary by brand.


Fast foods:

-almost nothing at Mcdonalds (french fries are supposedly safe)
-Wendys baked potato or chili
-NOTHING at burger king
-a couple options at Taco Bell
This was something I had to look up as Joe is freaking out if we are on the road. No more chicken nuggets!!

All I have to say is thank God Reese can still have dairy!

why are we doing this?

We found out a few weeks ago. The neurologist said, "your daughter has the highest intolerance to gluten that I have ever seen." huh? I was dumbfounded. Reese had seen the neurologist because of her tip-toe walking. He checked her over and cleared her, but not before running lots of blood work. Everything came back normal except her gluten results. I had she and Noah tested the same day and thought there must be a mistake. I had them run the test again because I was convinced that it had to be Noah's results. I have always felt that Noah could possibly benefit from the Gluten free/Casein free diet, but was overwhelmed by even the thought of it (picky, picky eater). I was wrong. His results were normal and hers were off the charts abnormal. I wasn't sure what any of this meant. I first thought, ok, Celiacs. Nope. It's like Celiacs in that her body doesn't tolerate the gluten, but it manifests differently. She doesn't get an upset belly. Actually, the resistance that's happening she most likely doesn't even feel. But it can cause behaviors such as tip-toe walking, etc. We may or may not see a difference in her. We are going to give it a six week try (God willing) and then meet with the doctor again. Because this is so tricky and because I have always wanted to see Noah off Gluten, I have decided to put both kids on this diet. I am scared and overwhelmed. But I have to do this. I could spend my time thinking about WHY (I actually have for a bit)-- why another thing when my plate is so full? But things could be worse and I know that. It only takes a walk through the cancer ward at Children's hospital too feel fortunate. I am blessed.

So, what is gluten? Is it wheat? What foods do I find gluten?

"A yellowish-gray, powdery mixture of plant proteins occurring in cereal grains such as wheat, rye, barley, and corn. The gluten in flour makes it ideal for baking, because the chain-like protein molecules of the gluten trap carbon dioxide and expand with it as it is heated. Gluten is also used as an adhesive and in making seasonings, especially monosodium glutamate (MSG)."

Basically, Gluten is found in every bread, cracker, cookie, baked good, packaged food, chicken nugget, most cold cuts...almost everything. If it doesn't say "gluten free" it most likely has gluten.

I started introducing the kids to gluten-free foods a couple of weeks ago and today was the first completely gluten-free day. I read the books and the blogs, went to whole foods, talked to the kids. I couldn't be more prepared, right? Wrong. It was tough. I heard lots of "NOs" and lots of tears. Noah handled it like a champ. Reese had a very, very tough time. And by the time dinner was over I was crying and cleaning (stress=uber clean house). I am not sure how I'm going to get through the next few weeks, but I will. I always do.

So our journey begins...