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Hi my name is Anja and my daughter Faith is 17 mos old. Faith has Cystic Fibrosis and went through the blood test for celiac disease 2 weeks ago. Her IGG/IGA levels were both positive. The other 3 tests were normal. We had the biospy done yesterday. We should have a confirmed diagnosis by Friday. Her dr. believes that based on her blood levels being SO high that she does have celiac disease. I don't know how to handle this since we are already treating her and dealing with the genetic disease of Cystic Fibrosis. CF requires a high fat high calorie diet, which per my nutritionist can be kind of tricky to get if we have to take out gluten too. I just wanted to introduce myself, since I think I may be around here soon, picking your brains and asking what works and what tastes good. Faith is a special little girl, that has been dealt a really crappy hand. LOL. But I know we are never given more than we can handle. Even though at this very moment, I feel like I have been given WAY more than I can handle. Thanks for reading. Any help or advice is greatly appreciated. I don't even know where to begin with all of this, and feel completely lost on where to start with her diet and going Gluten free. I don't even know what the "hidden" glutens are. UGH! SOO much to learn. Any good books that are recomended? HELP! :o

Anja

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Celiac.com Sponsor (A8):

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I'm curious why your nutritionist said that it is hard to get a lot of calories and fat on a gluten-free diet - gluten is in wheat, barley, rye, and oats - none of which are fabulous sources of fat, or even extremely dense sources of calories. Almonds, walnuts, peanuts, pecans, soy beans, coconut, avocado, full-fat milk, full-fat yogurt, cheese, fatty fish, beef, chicken thighs, and oils are all have plenty of fat or are calorically dense and naturally gluten-free. (Beans too, but they can be filling fast...)

If she is reliant upon baked goods, you can do a lot with gluten free flours (some of which have more fat and more protein than wheat flours, depending on which flours you go with) and nut flours. Other than that, the gluten-free diet doesn't have to mean any significant change in dietary composition. Eating whole, naturally gluten-free foods can get you everything in a diet you used to get. (One except is if she was reliant on regular bread products for getting enough folic acid; gluten-free breads are generally not fortified the way regular breads are. I imagine that you've already got her taking vitamins and are very aware of her health and what she's consuming, though, so I'm sure you may have it easier than your nutritionist has implied.)

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Hi Anja!

Welcome to the board! I know the gluten free diet can seem so overwhelming at first, but really, once you get the hang of it, it becomes second nature..... You already have an advantage due to the fact that you already follow a certain regimen regarding your daughter's diet, so you just need to "modify" that a bit......

Any questions you might have regarding the "gluten journey", just post away. ;) Our motto is that no question is too stupid to ask. We have all been down this road... :D

A couple of helpful sites for you:

www.glutenfreedrugs.com - to check on medications, etc.

Also, if you go into www.delphiforums.com, click on the left where it says Health & Wellness and the first forum to come up is a celiac website. In there, you will find the most extensive list of gluten free foods that are broken down into handy categories to make it easier. These lists are kept quite current. Also, there is a section called "The Best of Mirielle". Mirielle is a lady who owns her own gluten free restaurant and she posts all of her recipes for us (it is an amazing list of recipes......) :rolleyes:

Here on this website, there are categories that give information regarding cross-contamination, and sources of hidden gluten (example: toothpaste, envelope glue, play-dough)

One thing you are right about: God doesn't give us more than we can handle. God obviously has a lot of faith in you and your ability to handle this. :)

There are a bunch of really great people on this board with a wealth of information you can tap into. Just ask away!

Karen

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Your nutritionist doesn't know what he/she is talking about. Grains are low in protiens and fats and high in carbohydrates. A gluten free diet will make it easier to obtain more protiens and fats. You will find this website to be the best resource out there. The people here are more knowledgeable than most of the doctors and nutitionists out there. Celiac is a very poorly understand disease by most members of the medical community. All of the doctors I went to knew nothing about it and really didn't want to hear about it. Managing this disease is much easier than it seems to be at first. It does take time and we are only a few mouse clicks away.

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My son is 3 now, 2 1/2 when diagnosed last June. You MUST (I repeat MUST) get Danna Korn's book "Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children" it is BY FAR the best book out there...I have a copy, both grandma's have copies, and I bought a copy for my daycare provider too. High fat/high calories is NOT a problem on a gluten-free diet, in fact some would say exactly the opposite as I think it takes MORE fat to "glue" gluten-free baked goods together and make them edible! But that's just my opinion...

Also, as your daughter is getting "up there" in age, if you don't want to make your own gluten-free playdough (I have been trying and have had no success) you can purchase a big huge tub of it at www.discountschoolsupply.com it's GREAT and even though it's $20 for the bucket, wow, it's a LOT of playdough and I think well worth the price.

I also second Karen's advice to go to the Delphi Forum list. I'm there too (more there than here, actually) and I can't say enough good things about the people on that board, as well as the GREAT lists and recipes.

Bridget

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Guest taweavmo3

Welcome! Sounds like you and your little girl have certainly been through alot in the past 17 months. Has she been healthy so far??? Any hospitalizations? I know the early years of a CF diagnosis can be a realy adjustment period. But it sounds like you have a great attitude....your daughter will now doubt pick up on that and benefit greatly from such a wonderful mom!

I am a newbie to this diet too, my daughter has been on it for nearly two months. It is so overwhelming, especially those first few trips to the grocery store when you spend two hours reading labels, only to leave with half of what you really needed. I was all excited at first, thinking "okay, it's just a diet, I can do this no problem" Well, turns out it is hard.....and takes alot of getting used to. Alot of my recipes have not turned out, and my attempt at homemade pizza dough looked like anything but pizza. So, here's my piece of advice from one newbie to another: Keep it simple, and keep organized. I'm still working on the organized part myself. After trial and error, here is my small list of essential foods that are a must have for anyone with kids (and brands of food make a big difference in this diet, some brands of pasta turn into mush!)

Envirokidz cereal is Em's favorite. She eats the heck out of it, and with only 9g of sugar per serving, I let her!

TINKYADA brown rice pasta tastes most like regular. Emmie will often eat this with some butter or olive oil and parmesan cheese.

Rice cakes and peanut butter

KINNIKINNIK (sp?) has awesome frozen mini pizza crusts. I've heard this brand makes the best breads, and I agree. We just went out and bought $20 worth of mini pizza shells. You just throw on some pizza sauce, toppings, and they are done in 10 minutes. It's made with sweet rice flour, and is better than regular pizza!

Envirokidz animal cookies are essentials for us too

Make big batches of pancakes. They make good snacks too!

For dinners, I just do a meat, veggies, and rice or potato. There's no label reading, recipe adjustments, etc. I figure once I get snacks and breakfast down, I'll start getting more adventurous with dinner. Good luck with everything....this board is a great place for information!

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Guest ajlauer

Tamara,

boneless chicken breasts baked with pizzasauce and topped with mozzerella is TO DIE FOR!!! It's become our favorite dinner!

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