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Help! Here We Go Again
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6 posts in this topic

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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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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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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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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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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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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    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
    • Karen is right.  Do the research.  Have you been tested for celiac disease? Here is more info..... http://www.cureceliacdisease.org/screening/
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