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Kara'sMom

9 Yr Old Daughter Having Biopsy On Friday To Confirm Celiac

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Hello all,

I'm new here and definitely need some support b/c I am starting to feel overwhelmed. My daughter, Kara, quit gaining weight and so her Dr. had her tested for Celiac. It was VERY postive and now on Friday is her biopsy. I am not waiting for the positive result before I start the gluten free diet b/c she is SO skinny and needs to put on some weight. She never had any of the other symptoms other than losing weight but is suddenly complaining of stomach pain every now and then.

Now I'm starting to panic b/c Saturday is when we go grocery shopping for glutten free food. Where do I start? What are the staples? Eventually we'll meet with the nutritionalist but like I said...I'm not waiting any longer. So any suggestions would be greatly appreciated! Also...we have already planned a trip to Disney in May so I'm freaking out about what my child will eat when we're there for a week!

Thanks in advance!


Kara'sMom

DD age 10

diagnosed celiac 10/07

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Welcome Mom:

Your feeling of being overwhelmed is well known here. You're in good company.

Since you daughter has already tested positive (through blood test) for Celiac, that in itself is a diagnosis. She does have Celiac, no matter what the biopsy may indicate.

Gluten free food in every where around you. I would not run out an buy gluten free specialty food. It's expensive and does not always taste the same.

Start her out on a "natural" diet. Meat, seafood, rice, potatoes, fresh veggies and fruit. Cook with salt and pepper. Eliminate processed food until you know which brands are good at listing gluten.

Kara will need a dedicated toaster just for her. Wooden spoons and scratch pots and pans can hide gluten.

Regarding Disney World...many families here have had successful vacations and Disney is very accommodating.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Hello all,

I'm new here and definitely need some support b/c I am starting to feel overwhelmed. My daughter, Kara, quit gaining weight and so her Dr. had her tested for Celiac. It was VERY postive and now on Friday is her biopsy. I am not waiting for the positive result before I start the gluten free diet b/c she is SO skinny and needs to put on some weight. She never had any of the other symptoms other than losing weight but is suddenly complaining of stomach pain every now and then.

Now I'm starting to panic b/c Saturday is when we go grocery shopping for glutten free food. Where do I start? What are the staples? Eventually we'll meet with the nutritionalist but like I said...I'm not waiting any longer. So any suggestions would be greatly appreciated! Also...we have already planned a trip to Disney in May so I'm freaking out about what my child will eat when we're there for a week!

Thanks in advance!

Hi there, take a deep breath............it does get easier. I've only been diagnosed since July of '07 and I was feeling the same as you sound and I'm an adult. One big positive is that I've read that Disney does have places that offer gluten free meals............Mac Donald's french fries are ok........they cook them in their own oil, not with the other fried foods..........My dietician that I met with said think, "fresh, fresh, fresh". Fresh fruits, veggies and meats and fish. I read and still do read all the book I can purtaining to Celiac, you will get so much info. from books, order yourself a couple and get started feeling better that your daughter will be healthier. Hang in there.

Pam

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Before the procedure, talk to the doctor tell him you want "multiple biopsies in multiple locations"---too many doctors only take one biopsy. Celiac can be a patchy disease (damage-wise).

And in terms of food: Tinkyada (rice based) pasta is the best one out there!!!

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The thing that helped me most when we first went gluten-free (my dd was also 9 at the time) was to get a copy of of Danna Korn's "Living Gluten Free for Dummies." It's an excellent "primer" on gluten-free shopping & cooking, tells you how to "de-gluten" your kitchen and even gives a few yummy recipes (the "Chex Mix" is a fave of my two kids.) It is very overwhelming in the beginning. I remember wondering if I'd ever get up that steep learning curve. It's only been 5 months for us, but I'm so much more comfortable now that I actually don't think about what we eat all the time anymore. You'll get there too. My advice to anyone new is to start simple - find a few dishes that are gluten free (either replacement foods or even better, naturally gluten free foods) and start with those. Then add in more dishes as you get comfortable. I didn't dive into gluten-free baking until recently....was just too overwhelmed. Also, hang our here and on any other celiac sites that interest you, and read, read, read. Knowledge is key to getting you up the learning curve, and there's a wealth of it right here. Good luck to you and your daughter!

Rho

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Thank you all so much. I've found some pretty easy gluten-free receipes that sound like my DD will eat them. Her favorite foods in the whole world are anything Italian and Mexican. So of course I cried and cried thinking about all of her favorite foods going "bye bye". :(

However, my biggest fear is breakfast. Cereal is a staple in her diet. And from what I've read...gluten-free cereal either tastes like dirt, cardboard or old newspaper. YUM YUM!! Any tips on what your children eat for breakfast? How about those gluten-free waffles? Do they taste like the real thing?

Oh...the Dr. said he will take 8 little pieces of Kara's intestines. He is testing for other things as well.

I will definitely stick around as I'm looking forward to making new friends and am already feeling a little better about things. I am taking DD out tomorrow evening to shop for some gluten-free food so we can actually start the diet Friday night. No need to wait in my book!


Kara'sMom

DD age 10

diagnosed celiac 10/07

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The diet really does get easier pretty quickly. And you will feel better once you see the positive changes in her. She'll feel better pretty soon. The best way to start is with naturally gluten-free foods like the previous posters mentioned. But here are some of our favorites that are always stocked in the pantry!

My kids like Van's Frozen waffles. They sell regular and Gluten free so check the box. They also like Bob's Red Mill Pancake mix. Use 100% pure Maple syrup. Cheapest at a wholesale place.

I used to use Pamela's mixes for breads - very good. But we had to stop because of other allergies. My kids and I do not eat any of the gluten-free cereal unless it is a last resort. The Chex Mix gluten-free style is a good idea.

King Arthurs Flour web site and catalog sells great baking pans. Italian and french bread pans, donut pans, Twinkie pans :D , Hot dog and hamburger pans, etc.

Cherry Brook Kitchen makes GREAT Chocolate cakes mixes. That is what we use for cup cakes. Then make a butter cream frosting (1C crisco & 4 C confect. Sugar and a little vanilla to taste.) McKormicks food colorings are safe.

By the way, we love pasta too. So Tinkyada brand is great for lasagna, stuffed shells, etc. We also use BioNature and Glutino easier for me to find. We use Classico tomato sauces (they label for dairy if you are removing that too.)

Mexican isn't that hard to make. We've made encalladas, quesadillas (great for left overs), and nachos are a staple.

If your daughter is missing a particular food, ask or search on this site. Odds are high someone has already found a good substitute. Since she is 9, make sure you make her a list of safe candy, chips, drinks, grab and go style snacks that she can keep in her backpack or with her at all times. Don't want her grabbing an unsafe food with friends because she didn't know better and don't want her left out when everyone else is having snacks.

IMO, have her avoid pizza for a few months and even then don't buy frozen pizza, make your own. I cried when I first ate the gluten-free frozen pizza. Just awful. After several months I started making my own and I am much happier. Even frozen crusts are decent to me now :)

Hope that helped. Good luck at the biopsy, it is not a scary as it seems.

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My son was dx when he was 9, and since you are overwhelmed already (perfectly normal! Get ready for SAD, that might be next!) we'll give you our short list of advice:

1. Tinkyada pasta. Eat lots of it.

2. Turn a cabinet into Gluten-Free Central. All our gluten-free pots, pans, strainers, utensils are in the same spot. All are the same color (Red, or with a red nailpolish band on them somewhere)

3. No pity parties! Don't feel too sorry for her. It's not the end of the world, even though it will feel like it, often, during the first year. She is young, and if YOU don't treat it as a catastrophe, neither will SHE.

4. www.missrobens.com Their pizza crust mix is excellent, foolproof, and quick.

5. EnviroKids cereal is not bad at all. Pamela's pancake mix makes ones every bit as good as "real" pancakes. I make big batches of them, freeze them into ziploc bags, he nukes them for breakfast (and occasionally takes them for lunch, too)

Good luck! Pace yourself, don't read too much advice at once, and YES you CAN do this!

Joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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I'm wondering what the need is for a biopsy if the blood test was extremely positive?

If the biopsy is negative, would the doctor want you to feed your daughter gluten?

My understanding is that biopsies are only accurate if they happen to hit an affected patch. Given that you have 20 feet of intestine, and they only take 4-6 1/2-inch samples, it's very hit-or-miss, especially when villi damage is not visible to the naked eye.

Of course, it's totally possible that your daughter's villi are totally destroyed, which would make a positive diagnosis a cinch--but you already have a positive diagnosis via bloodwork.

Unless your doctor has a good reason for needing to rule out another condition (and there are some), I would cancel the biopsy. ANd your doctor did say that he just wants the boiopsy to confirm the blood work.

I know that for years, biopsy has been the gold standard for diagnosis, but times have changed. Now, positive blood work is at least as accurate (if not more so) than a biopsy. THere's also the risk factor with anesthesia (yes, there IS risk involved).

As I see it, if the biopsy is just for confirmation of the bloodwork, the only benefit is to your doctor's bank account.

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Just wanted to mention that there are a few mainstream cereals that are gluten-free:

Fruity and Berry Pebbles

Cocoa Pebbles

Trix

Dora the Explorer Cinnamon Stars

Envirokids Gorilla Munch cereal is really good. Tastes like a cross between Kix and Captain Crunch.

My kids also eat the Van's gluten-free Waffles, and I make gluten-free pancakes and do add-ins-- chocolate chips, blueberries, bananas, whatever sounds good.

You can make cereal bars by using the traditional Rice Crispy Treat recipe, but substitute one of the Pebbles cereals instead of the Rice Crispies.

We also love Tinkyada pasta, and rarely use any other brand. It's really good, and is harder to overcook, unlike most other brands which turn to mush so easily.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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