Daughter Os A Celiac

[KariBeri84]

Hello everyone! I am new to this site. My dad was diagnosed about 6-8 years ago and I've never taken the time to learn about this disease. Since I have moved back to the town he lives in I have been learning more and more, but not enough to satisfy my heart and soul. I can remember when I was little and I knew everything about him. Now, as an adult, I feel like I know nothing about him because I don't know anything about Celiac and Celiac is a part of him...

I feel guilty everytime I try to cook dinner for the family because I always have to ask what he can and can't have. When I go to the store to shop for groceries his phone is constantly ringing with questions about the ingrediants in this type of noodle and in these types of bread. Honestly... I feel like a bad daughter because I don't know... and I should. Some times I just don't know how to deal with this so I just avoid him until I'm ok again. What do I do? Do any of you know of any good books on Celiac? Maybe even some more web sites that might help me to learn more?

~Kari

[angel-jd1]

Kari-

That is great that you are wanting to learn more to help your Dad. I am sure he is very grateful for your understanding and willingness to learn.

You have come to the right place. Reading the posts on this site is the perfect place to learn more about celiac. You can also post if you have questions on ingredients or products. We are all here to help.

As you may or may not know, Celiac is genetic. Have you been tested yet? It is a good idea for all first degree relatives to be tested for celiac.

Keep posting and reading. Soon you will be an "old pro" at Celiac info.

-Jessica

[flapjack]

Hello everyone! I am new to this site. My dad was diagnosed about 6-8 years ago and I've never taken the time to learn about this disease. Since I have moved back to the town he lives in I have been learning more and more, but not enough to satisfy my heart and soul. I can remember when I was little and I knew everything about him. Now, as an adult, I feel like I know nothing about him because I don't know anything about Celiac and Celiac is a part of him...

I feel guilty everytime I try to cook dinner for the family because I always have to ask what he can and can't have. When I go to the store to shop for groceries his phone is constantly ringing with questions about the ingrediants in this type of noodle and in these types of bread. Honestly... I feel like a bad daughter because I don't know... and I should. Some times I just don't know how to deal with this so I just avoid him until I'm ok again. What do I do? Do any of you know of any good books on Celiac? Maybe even some more web sites that might help me to learn more?

~Kari

Hey there, it's good to see you doing a little research. I don't have celiac myself, but my 8yr old daughter was diagnosed at age 4 (scoped). I have learned the general rules of thumb that keep her feeling healthy and the pitfalls that can ruin the best intentioned research & preparation. This is my first post in here so I'm just going to lay out a rough outline of my ideas for you & hope for the best.

At first the hardest part was finding palatable replacements. We found several brands that were easy to make & tasted MUCH better than many we'd tried before, like Tinkyada pasta with the rice-bran in it actually has good texture (I'm sure there are others but we didn't find any), "Really Great Foods" pancake mix which I found also works in a waffle maker, "The Gluten-Free Pantry" sandwich bread mix (to which we dedicate a bread maker that we use about twice a week), etc. Our son has egg & peanut allergies as well btw, so it's a little more difficult than average for us to get alternative recipes to work properly.

Right away, we learned that it doesn't matter what you're cooking if you cross-contaminate it with wheat because the flower is in your cooking utensils, mixer, embedded into your cutting board, in residue on the cookware, etc... it will get in the gluten-free products thereby "spoiling them". We had to make sure our kitchen never gets gluten products in it now, it's too hard... Things like spreading butter on wheat bread then dipping the knife back in to get a little more will contaminate the entire butter dish making it unusable. Any mixer or breadmaker or pan you use to bake with would become contaminated... So we basically bought new cookware & started over after wiping down all of our cabinets as best we could.

Buying gluten-free specific items & keeping cross-contamination to a minimum is fairly straight-forward. The tricky part, however, seems to come from the undeclared sources of various food additives. Things like caramel color can be derived from wheat OR corn (have to do some research to find out which), malt powder (someone feel free to correct me if I'm wrong, but Rice Krispies, for example have malt and I've been told it is derived from wheat, so even though wheat isn't declared as an allergen present in the ingredients, this is not a gluten free food), soy sauce is usually wheat derived, etc. The list goes on...

All you can do, is your best though. In our case, we simply pack her lunches, bake her own treats for parties, make her friends wash their hands when they come over before using her computer or playing her games and everything seems to be fine. You can't be perfect so it's a fine line you have to walk.. striving for as gluten-free as possible without becoming obsessed & letting it take over. With your dad, are you simply wanting to be able to go out to eat with him? bring him things? invite him over for meals? All that can be perfectly easy to do if you perfect the cross-contamination stumbling block and YES everyone messes that up from time to time. Just learn, adapt & overcome. Eventually you'll have a handle on it & know where you stand. Good luck

[KariBeri84]

Thank you Jessica and Flapjack. Just the little you have told me has helped some. Jessica, I have been tested. I was tested almost 7 years ago, my dad says I'm about 2 years over due for another round of testing. He says All of us kids are supposed to be tested every 5 years.

[kbtoyssni]

Welcome! I'm sure your dad will really appreciate you learning about the disease. And don't worry about calling him all the time asking about ingredients. He's the expert since he lives it everyday. I love when my friends call and ask about ingredients because I know it means they care enough to get it right.

My favorite book about celiac disease is Dangerous Grains. My favorite cookbook is The Gluten Free Gourmet.

Maybe you can go over to you dad's place and cook with him. He'll have all the gluten-free ingredients and will be able to teach you as you go along. Don't worry that you don't know everything about the disease. It takes a long time to learn it all. I've been gluten-free for 16 months and I'm still learning things that do and do not contain gluten!