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andreamly

Dd Diagnosed A Year Ago - No Growth!

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I am getting very frustrated and need some advice.

For 5.5 years we searched for a reason for why my daughter was so tiny and not growing. She had a negative bloodtest to Celiac when she was 18 mos old and noone thought to test her again - duh! and I didnt know anything about the disease to request it.

And when they were testing her at 18 mos noone said to make sure she eats a lot of wheat beforehand!

Finally at 5.5 after every single other test came out normal, we switched doctors and he requested Celiac testing. Bloodwork was positive, as was biopsy.

It was the best day of my life. I thought we were finally going to get somewhere.

But a year later and hardly ANY growth at all! I know she is a VERY picky eater and hardly eats, but kids dont eat all the time and still grow!

Just a word about my daughter. She was not very symptomatic - very independent, some diarhea, but not a sickly child - just very tiny!

She did have rough skin and she STILL has rough patches. That was also getting me down. Thought it went away for a bit but it came back.

I would love any insight. She eats so little everyday - gluten free cereal, banana (ONLY fruit she will allow), french fries, and a piece of chicken or salmon.. thats almost it !

Thanks for your help. I just want to hear that it could take time for it to kick in.. or if there is something else we could be doing.

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If she doesn't have a very big variety in her diet, is she taking a vitamin supplement? This was suggested to us a few years ago by our ped since DD at the time would only eat peanut butter sandwiches and apples. She's much better now plus gluten free, but every now and then I realize she is in a rut and pull out the vitamins.


Mom to 3 girls

DD1-diagnosed by allergist 10/2006

DD4 & DD9-diagnosed by Mom 01/2007

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Can she eat dairy? If so, what about some gluten-free mac & cheese? I make it with Tinkyada pasta and Velveeta OR Kraft Cheese powder (can be found by the parmasen cheese in your grocery store and is what is used in the Kraft Mac & Cheese). DS loves mac & cheese and will never pass it by. I also make gluten-free spaghetti & meatballs a lot b/c it is another fav. Does she like chicken fingers? I use Pamela's Baking mix & a little corn meal to make a breading for chicken and then fry or you can bake too.

Is it possible that she is still getting gluten somewhere? Did your dr run bloodwork to see if her numbers dropped any over the year?


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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I would recommend having her full Celiac blood panel re-run to make sure that her Celiac levels are not high, to rule out the option that she could still have some gluten that is casuing her problems.

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When my oldest was first diagnosed at the age of 5 he weighed 25lbs. He had a huge tummy and spindly little arms and legs.. he was severely malnurished.

that was 17 years ago.. and we had pretty slim picking for gluten-free food.

HE didn't grow quickly after that and even today is a small man.

and picky eating goes along with that

My 8yo was 9mo when we diagnosed him.. he is a Big boy.. but still a picky eater..

some of the things we have done to get them to eat..

We give youngest gluten-free pretzles.. and a glob of nut butter and a glob of marshmallow fluff

he loves to dip his pretzles in it.. (instead of bread)

Cheese melted on Tortillas

applesauce

yogurt

homeaded chex mix (favorite cereals,nuts, and cin/sugar/butter lightly roasted then I add raisins or dried fruit)

milkshakes

muffins

anything that they would eat.. offered at anytime of the day.

Also make sure she is getting a good multivitamin

I hope that helps!


Living Gluten free since 1989

4 kids

3 Celiacs (biopsy confirmed)

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