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kim26

Needing Some Support

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my daughter was recently tested for celiac due to symptoms she's experiencing(diarrhea,bloating,gas,sudden weight gain after going on a "healthier" diet rich in whole grains, nausea, mood swings etc), her tissue transglutaminase test came back as a "weak positive". we went forward with the biopsy which came back negative. i trust that it's truly negative as the GI doc took 12 samples. they have ordered a gluten-free diet for 2-3 months to see how she responds. we are trying to be strict but we make accidental mistakes sometimes. so far the nausea has greatly decreased, the diarrhea seems quite a bit better, gas has greatly decreased as well and her mood seems much better. not to mention she's lost 5 pounds in a month(not that she was ever chubby, she had started to develop a little tummy tho). the nutritionist mentioned possible gluten intolerance as opposed to actual celiac. i guess I'm just feeling overwhelmed by all the diet watching and bread making...lol. i want to be sure i am doing the right the thing as this is a lifelong and dramatic lifestyle change for her. any thoughts, opinions and suggestions would be immensely appreciated!!! sorry so long winded!

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Celiac.com Sponsor (A8):

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As far as I know, positive is a positive and means she needs to stay strictly away from gluten. You're doing the right thing by sticking with the diet. Even with 12 samples, there is just so much that can be missed.

I know it is hard but it is so worth it. I cannot believe the change in my daughter. :)

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You've seen the positive results, the writing's on the wall (or in your tTG scores). . . but the good news is . . . It gets easier!!!

There are LOTS of false negatives, especially in children. A positive, even a weak positive, says a lot but a positive dietary response says even more.

It's a bit overwhelming at first since you seem to focus on what you can't have but for your daughter's sake, keep an upbeat attitude and focus on the things you can have. I made a point of finding good replacements for all of my daughter's favorites. When it comes to social engagements (fancy name for playdates) and soccer team snacks, I make sure to send a snack that is just as good (or better) than what the other kids are having. At the Valentines Day Party at school, the nurse called to tell me that they would be serving sugar cookies at the party. So I assumed that they would probably, at a minimum, have some red sprinkles, or in the shape of a heart or something. I took in a decorated iced sugar cookie. The rest of the kids had a plain (icing and sprinkle free) cookie. The mouths drop and I heard a few "that's not fair" and I'm sorry to say, that made me happy.

If there are some old favoUrites that you need help replacing, let us know and we'll give you the name or recipe for a good alternative.

I'll say it again because it's worth repeating . . . It gets easier.

I showed my daughter your post . . . she was 6 when diagnosed. I asked her if she had any advice for you. She said to try the rice cakes with peanut butter and get some fruit chew snacks (Target brand is gluten-free). . . as far as she's concerned, that's all there is to it. :D


Janet

Experience is what you get when you didn't get what you wanted.

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thank you for the quick replies! I'm already feeling better about everything, the support really helps!! some help with alternatives would be fabulous....i found some really good bread mix(Bob's Red Mill), but she is really missing "Cheez-it" crackers and cereal and oatmeal. those are the main things she complains about. the brownie mix by bobs red Mill is really good as well, there seem to be plenty of "normal" sweet options anyway. to be honest she is doing really well, she's an amazingly strong little girl, this experience has shown me a side of her that i really admire. any help with those particular items or any other snack suggestions would be great!! thanks in advance!! this sight and its members are so wonderful, I'm very grateful for you all

:-)~K

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Kim,

If you can find another child in your area that has this (and preferably has been dealing with it for a while) I can't even begin to express to you how valuable a resource that is for you and your family. A close friend of mine is also celiac, and has been diagnosed since she was 9. When I was diagnosed this fall, she was my number one supporter, showing me where to buy gluten-free foods locally, sharing homemade treats, and comiserating when, in Spanish class, everyone was enjoying gluteny treats. She and I have been friends since we were 11, and this gave us something extra to bond over.

If your daughter is interested in having a celiac "big sister" PM me and I'll give you my email. I would be more than willing to talk to her- I would love the oppurtunity to help someone like the people in my life have helped me :-)


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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thank you for the quick replies! I'm already feeling better about everything, the support really helps!! some help with alternatives would be fabulous....i found some really good bread mix(Bob's Red Mill), but she is really missing "Cheez-it" crackers and cereal and oatmeal. those are the main things she complains about. the brownie mix by bobs red Mill is really good as well, there seem to be plenty of "normal" sweet options anyway. to be honest she is doing really well, she's an amazingly strong little girl, this experience has shown me a side of her that i really admire. any help with those particular items or any other snack suggestions would be great!! thanks in advance!! this sight and its members are so wonderful, I'm very grateful for you all

:-)~K

Crackers have been a little tough. My daughter likes the glutino crackers (look like a ritz) that she will put cheese, cream cheese or peanut butter on (not plain . . . but she didn't eat ritz plain either). She likes Blue Diamond Nut Thins Chedder or Ranch Flavor, but some people on the board have had problems with these (not us).

Here is a recipe for mock goldfish crackers. I have not tried this one yet but I plan on it . . . sometime :rolleyes:

http://allergygrocer.com/id651.html

My daughter was never an oatmeal person so I haven't had to replace that, hopefully someone else will speak up. We did try cream of rice and that did not go over well at all. :P

Name brand cereals that she likes are Fruity Pebbles and Trix but those are off limits now because she is having problems with food dye. Dora the explorer Cinnamon Stars were a favorite for awhile. Now she is eating Health Valley Corn Crunchem's (like Chex). She also liked the Envirokids Amazon Frosted Flakes. Mostly, she prefers to eat pancakes. I make a huge batch on the weekend, freeze the leftovers and pop them in the microwave on school mornings.

Chex Mix is a snack that I make often using the Health Valley Corn and Rice Crunchems, Glutino pretzels, Nuts, Lea&Perrins Worstershire Sauce, & Lawry's Seasoned Salt, onion powder & garlic powder.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

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As for oatmeal, Enjoy Life makes a Granola cereal that, cold, resembles horse treats in many respects (and my horse agrees :lol: ) However, if you add milk (dairy or otherwise) like usual and then throw it in the microwave for a few minutes, you get an oatmeal-like cereal that's pretty darn good. The best flavor to do this with is cinnamon crunch, though the very berry wasn't bad either. And once she's healed a little more you can try gluten-free oats...Bob's Red Mill is one company that does them


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Just do not get the quaker oats rice cakes, they hace CC, get the Lundberg Rice Cakes instead.

please do not give her any oats, they are really bad - even the ones they claim are gluten-free...

Gluten Free Pantry Brownies are the universal favorite - not that others are not good...

You can make great chocolate chip cookies there are a lot of recipes, you will soon learn how to convert your own recipes. You can make regular cornbread just sub corn flour for the wheat flour, I use coconut milk to make it dairy free. If you do not have corn flour just use all corn meal & put an extra egg in the liquid called for. No need for xanthan gum in cornbread. Another easy thing to make is banana bread, use lots of finely chopped nuts, & add a little extra vanilla & leavening & a little bit of xanthan...

& yes, it does get easier, you sound like you are doing great so far!!! Boars head deli meats will say Gluten free right on the packaging. I just ran to the store & got some of the boars head turkey, to pack for a lunch tomorrow. I am going on a trail ride. I also packed some of those baby carrots, broccoli & a salad dressing dip, rolled up the meat slices & put them in a snack baggie, grape tomatoes, walnuts, banana & some dried apricots & raisins. those are all things you can grab right quick from any grocery & have a meal. I keep a lunch kit in my car with eating utensils & essentials & I also keep a cooler in the car in case I eat out & have leftovers & want to run errands I can just put things in the cooler to hold them over.

you will also want to keep baby wipes in the car for when her little hands get all wheat contminated from places... I like those little disposable packs.

there is a great recipe for cheese it type crackers, I will look up my recipe, it is easy to make & delicious, you will have to make two batches because the gluten eaters will scarf them down.

here you go from my cookbook collection. I would make them plain first - which is great & then experiment with the next batch if you want to add another flavor etc. like dill, onion... but we always liked them plain.

CHEESE IT

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I'll chime in too that the day to day does get easier. We've been gluten-free since mid-December and it already is MUCH easier. And our 8 year old is so much healthier and happier. We had gone through the diagnosis process saying that if he did have Celiac he must have a really mild case because he was a happy, healthy, "thriving" kid. (We didn't know much about Celiac back then!) Boy were we surprised to see what he is like as a truly happy, healthy, and thriving kid. I just wish we'd known 8 years ago... A day doesn't go by that I'm not thankful that we know he has Celiac and that all we have to do is eat differently.

Now for those replacement ideas - my son LOVE rice crisy treats. We use Erewhon crisy rice cereal. I make them plain (just normal recipe), with drizzled chocolate (just melt chocolate chips and drizzle on top), and with Mickey Mouse Club cereal mixed in.

My son used to love cereal, so I bought LOTS!. He still likes it, but now that he has Chef Mom wrapped around his little finger he likes omelettes and pancakes better. I, too, make the pancakes on the weekend and then put them in the fridge or freezer for school days. I also make a 2 egg omlette and then split it in half and save 1/2 for the next day. His appetite is up so much that he usually eats 2 of the above (omelette and pancakes or omlette and cereal). Other cereal favorites: Gorilla Munch, Little Einsteins, Amazon Frosted Flakes, Mickey Mouse Club, Erewhon Crispy Rice with Berries.

We just discovered Gluten Free Sensations chocolate chip cookies. In fact, I thought he had gotten glutened last week and just got off the phone with the dietician and now I'm questioning whether he really got into gluten or just didn't eat too many cookies! That's the worst part of the diet - not knowing if/when/what glutened them. In our case it would most likely come from CC and that's so tough to find!!

Good luck and let us know if you need any specific replacements.

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