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Help! Here We Go Again


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5 replies to this topic

#1 emsmom

 
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Posted 15 December 2004 - 08:54 AM

Hi

About 6 months ago My daughter was going through testing for celiac disease Her Pedi ran a blood test which came back positive but the Gi Doc did bioposy which was negetive so GI dr told me its not celiac disease (bet some of you have heard this b4) So anyways I modified Her diet a little anyways against GI docs suggestion and there was a little improvment well, this week shes sick again bad tummy pain, Weak very foggy headed so off to the Pedi who strongly suggested we try the diet for a period of time to see if it helps so this is the question what foods are good for kids wehere do i begin any help would be great !!!!
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#2 lovegrov

 
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Posted 15 December 2004 - 09:12 AM

The best advice is to go simple while you learn. Fresh meat, fruit, vegetables, and eggs with a minimum of processed foods. Hard block cheeses are also safe. How old is your daughter?

richard
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#3 emsmom

 
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Posted 15 December 2004 - 11:52 AM

My Daughter is 6 and has had chronic stomach pain and sugar trouble since birth so after all the medical intervations she has had by specialists my reg Pedi just wants me to try the diet. Yes luckily she is a big big fruit and veggie eater. She also eats alot of peanut butter (due to hypoglycemia (sp)) any suggestions on good crackers that she can make herself peanut butter and crackers rather then the store bought kind these are a staple in her diet.
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#4 ryebaby0

 
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Posted 16 December 2004 - 01:36 PM

My son likes EnerG Wheat-free crackers, which we buy at Wegman's. You can also get them on-line thru Miss Roben's or the Gluten-Free mall. Rice crackers are in most grocery stores (look with the asian food) but be careful, not all of them are gluten free (barley malt or malt flavoring is the guilty party). I hate the taste but they make a good base for other things. Polly-O string cheese from Kraft is gluten-free and so is Oscar Meyer bologna!

There's a good "kids gluten-free cookbook" (that's actually the name) out there with quite a lot of good recipes -- I like it better than the Bette Hagman books, but that's my preference. Robyn Roben also has a cookbook and we use that one the most -- but much of the time we just eat "whole" food -- chicken, fish, rice, rice pastas, etc. and lots of fruits and veggies.

A negative biopsy can just mean they missed the damage -- they can't "see" it except under the microscope. I would try a gluten-free diet for 5 or 6 weeks and see if she's feeling any better.

Good luck
Joanna
mom and wife to celiacs
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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

#5 FreyaUSA

 
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Posted 17 December 2004 - 07:05 PM

My daughter (who just turned 7 today) and two older sons are all on a gluten-free diet. Here are a few things my daughter likes:

-- caramel corn cakes (you can put peanut butter on these, they're great!)
-- apple cinnamon rice cakes
-- sliced apples with peanut butter dip
-- babybel cheeses
-- celery stuffed with laughing cow soft swiss cheese wedges (weird, but she loves it)
-- soft corn tortillas made into sandwiches (La Banderita brand is our favorite -- if you heat them in the microwave a little, fill and roll them in a half sheet of paper towel, they retain the roll up shape perfectly) My daughter likes provolone and mayo; one son likes peanut butter with jelly in a dipping cup, my oldest son likes meat and cheese and mayo
-- raisins and nuts (cashews and pistachios are the preferred)
-- jello
-- cereals that aren't heavy on sugar that my kids eat: Corn and Rice Crunch'ems (like chex) and Gorilla Munch (kix). Sugar cereal: Fruity and Cocoa Pebbles
-- yogurt (gogurt and others)
-- gluten-free bread (I make it in the bread maker) made into toast (awesome stuff, but not as good untoasted, though we're getting used to it.)
-- raw carrots
-- apple sauce (in individual cups)
-- gluten-free chocolate chip banana muffins
-- Brownies, specifically made from Bob's Red Mill gluten-free brownie mix. These are GOOD.
-- Pastato brand Macaroni and Cheese (none of my kids will eat any other brand)

I hope this helps a little. My 15 year old is much more likely to eat anything, but then, he thinks he's starving all the time (his criteria is "Is it disgusting?" if it passes this with a "no" response, he eats it. :blink:) So I listed mostly what my daughter regularly eats.

Good luck! (I put my kids on the gluten-free diet without doing a biopsy at all. They are all much healthier than they've ever been!)
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#6 cherylk

 
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Posted 29 December 2004 - 05:57 PM

emsmom, My child had a negative blood panel. When I stumbled onto celiac.com and started reading about celiac disease I felt like God had answered my prayers. I decided to not listen to the doctors and I was refered to Enterolab (www.enterolab.com) and got a positive gene and stool test for celiac disease on my four year old. The pediatritian and the GI said it could not possibly be celiac disease because the blood panel would have shown it. WRONG! Test all can have false negatives and if something is still wrong with your child, do not think the doctors are not fallible. (that is why there exists malpractice insurance) I just fired my pediatritian today and the GI lives on another planet. He said for "him" the blood panel was all he could accept for a celiac disease diagnosis because it is a life long disease and there is no sense in going gluten free unless you really needed to. I had to burst his bubble and let him know I was not in this for him. Go to Enterolab and check out the gene and stool test if you want to know if your child has celiac disease. (sadly it seems the blood panel should be enough) Check out DR. Fine's curriculum vitae. You will be impressed. My child has a casein sensitivity in addition to celiac disease, so maybe your child is not improving as quickly because she is still having sensitivity to some other food. I also thought going to McDonalds and giving my child the chicken off the cobb salad was fine. WRONG AGAIN. I got a lesson in cross contamination. You also have to invest some time in learning those 15 letter words that you can't pronounce on the back of processed foods means you are probably getting some gluten somewhere. Going to the new pediatritian today was amazing. He just looked at the pictures of my daughters different stages of skin breakouts and because he has two little boys that are (constipated) Celiacs he didn't look at me like I was mentally challenged. Listen to that little voice inside your head. What do you think is wrong with your child? Do all the peices of celiac disease symptoms fit, and then research it until you know as much as you can. Just so you know, you will see on Enterolab, about the intestinal villi and it could come back negative depending on which spot they did the biopsy on and some celiac disease patients don't have the villi damage anyway. Keep reading on the lab site and go to the Intestinal Health site from Enterolab and there is a lot more information there. I have always had a passive personality. No more! The doctors have pushed me too far and I am now a lion protecting her cub. The doctor works for you. If he isn't working find another one. I hope this helps
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