Hi, My daughter has...

[jilly-beans mom]

Celiac disease. Jillian is 21/2 years old and has been gluton free for almost 2 yrs. It became aparent she had a problem when I started solids, she would screm and cry, throw up, massive bowel explosions etc etc after eating. I noticed it to be linked to bread when I fed her a peice of toast (innocent enough eh) and afterwards she freaked for what seemed like hrs. I mentioned this to the dr and he right away said celiac disease. Jillian also suffered (s) from failure to thrive, at 21/2 she still only weighs 16lbs 7oz (as of yesterday) but this child eat and eats and eats some more. I swear she must eat as much as I do over the course of a day. I thought and the dr said that once she was gluton free she would A) be more happier and B) gain some weight, she is haelthy in every way excpet for the celiac and ftt. The only difference I see is that she is much happier than she used to be.

She has not had the biopsy yet b/c I refuse to make her sick just to see if she is sick. When she is old enough to decide whether she wants it done or not I will allow her to decide, but putting her through pain all for nothing seems cruel to me. Oddy enough she seems to handle oats ok, she accidently (well on purpose for her but it was an accident on my part) got into a packet of instant oatmeal and before I knew what she wasup to she had eaten it no pain, no screaming nothing ...she was fine so now I'm confused, I know barley, wheat and rye are bad for her but I was told oats also.

I am running out of ideas for snacks and meals b/c her diet is so limited. It seems that she cannot have a ton of stuff thats being sold, so any ideas would be great.

I guess thats my story, thank you for reading!

[Andi]

I have been contemplating doing a GF trial for my girls - ages 3 and 16 mos.
Here are some of the snacks I have seen that are GF:
Mi-Del Arrowroot animal crackers
Mi-Del Chocolate chip cookies (these are both very good - I've tried them & the kids like them too)
I believe that Gerber Graduates fruit snacks are gluten free, but check this to be sure.
Minute Maid makes all natural fruit snacks that I believe are also gluten free and dye free.
My kids love chocolate chips.
Both of them won't eat bread & most pasta anyway so eliminating gluten won't be super hard (I hope) except when they're with other kids who have glutened snacks. My monkeys choose fresh fruit anyday over crackers or sandwiches - they're just not interested in most glutened food.
I'd love to know how you handle the gf thing around other kids. It seems everywhere we go, food is offered & most often it's glutened convenience food.
Andi

[jilly-beans mom]

hmmm for some reason i expected more support from people who are alo gluton free and more experirnced than myself

[aklap]

Hi Jilly's Mom,

Welcome to the board! I started a post to you this morning about 2:30...but could not finished it...too tired.

I am sorry you feel you were being ignored. Sometimes the activity out here is sporatic...it's summer, things get busy. I'm sure free time is a premium for everyone. Replying (for some us ) does take some time. The great thing about these boards is that all the info, past questions, and knowledge are still there just waiting to tapped.

I can't offer a whole lot of help on what to feed a 2 year old as we do not have kids. While you were waiting for a response, have you looked around out here? I'm sure if you've seen some of the GF food lists - you'd probably be able to find things.

Here are those lists:
Delphi Food Lists
Chicago Mainstream GF Food List

What kind of things does she like? That might make it easier for us to help you. We don't know if she has other intolerances...you say her diet is limited.

Doing a gluten challenge is really a personal choice. Many will not do it. They don't want to A) get sick B) risk the possibility of triggering other autoimmune diseases that can come due to exposure to gluten.

If she is now 2.5 and has been GF for almost 2 years...they dx'ed her around 6 months old?!?! Can you feed solids to a kid at 6 months? Like I said...I don't have 'em...so I don't know how to feed 'em LOL!!! Hmm did you mean GF for 2 months?

From what I've seen blood tests on kids < 2 years of age are very unreliable. Sorry, I don't remember the exact reasons at this time...I'd have to look it up.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Andi]

From what I understood, your daughter has been off gluten since about 6 months old due to her reaction when eating products with wheat in them.
I agree with Al that it's amazing that she was diagnosed so young. How did they come to that conclusion? Did they test her for wheat allergy or was she too young?
The reason I ask is that I agree that it seems like she should have improved (and certainly gained more weight than she has) on a gluten-free diet. Is it possble that she has other food allergies or intolerances that haven't been looked at? Does it seem that the other problems (diapers and such) have improved since she's been off gluten or are there still problems there?
The delphi lists (the ones that Al sent the link to) have been so valuable to me while I'm trying to restructure my diet. Please take a look at them.
Have you tried some of the snacks and gluten-free items for her that are available at health food stores and in the natural foods sections of regular grocery stores? There is a lot available today. I've heard good things about Quinoa pasta - it's made from Quinoa so it's gluten-free. Most kids really like noodles...especially smothered in fattening stuff like cheese or butter....
This is just my opinion, but as a mom, I would be prodding my pediatrician to explore the possibility that there might be another problem going on. 16 pounds at 2.5 years really is very tiny (even for a child with Celiac Disease, in my opinion) and I would want more answers.
When you take a child with Celiac Disease off gluten, they should improve and gain weight if their diet contains proper nutrition. Have you consulted a nutritionist? I think on most insurance plans they are considered a specialist so I believe you would only have to pay a specialist copay ($30 on my insurance plan). A nutritionist would also be able to give you suggestions on what you could feed your daughter & how to help her gain weight.
Again, I would seriously explore the possibility that there may be another problem. I hope that doesn't sound discouraging - it's just my opinion as a slightly neurotic mom!
Andi

[Andi]

One more thing...
If you go to yahoogroups.com, there are groups specifically for parents of kids who have Celiac Disease. I would search under celiac kids to find one. You may get more suggestions there. I'm not a member of one b/c my kids haven't been diagnosed yet.
There are only a few on this forum (that I'm aware of) who have young kids w/ CD.
As Al mentioned, there is a lot of information from past posts that you can find here though by hitting the search button.
I hope this helps!
Good luck!
Andi

[aklap]

Jilly Bean's Mom,

You might try Braintalk's CD/GS board. There are LOTS of Moms (and a few Dads) with kids searching for answers (and food) for their kids.

Also - it's a bit more active than this board. They might be able to respond quicker to your questions.

Good luck!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Kristie]

Jilly-beans mom,

Hello and welcome, My name is Kristie. My Son Matthew will be 3 yrs old on Sept 7th. Last year he had a positive blood test for Celiac and last month we found out he has the DQ2 gene.. so although the doctor's won't admit it, we feel he has celiac. He's been GF for nearly a year now. He's also CF (no dairy) Even though the R.A.S.T. comes back negative, he still had a big reaction during our dairy test last week. So he's back on a GFCF diet. (never took him off of the gluten.. we know better!!!!)
I'm sorry if I wasn't there for you sooner. We're trying to get some last minute family summer activities done before school starts this Tuesday! I can't believe it's coming to an end already.
I will have to reply in more depth tomorrow, because I'm sitting here doubled over in pain for some unknown reason... but you asked about diets.. I'll be happy to throw out there what Matthew eats, if that helps any. (warning... mom needs to learn to cook more GFCF... it's still a work in progress) anyway, hope this helps.
lots of eggs, gfcf waffles, gf cereal he likes the GF corn flakes (be sure it says GF.. we've been there, done that!!)
Enviro kids crispy rice bars GF
Lots and lots of fruits.. and vegetables. (he doesn't care for vegetables, however, we dowse them in GF ketchup) he'll eat anything with ketchup!!
He eats gf sandwhiches.. one of his favorite meals is GF pasta tuna salad with baby peas. He loves it!
Other than that for snacks he again mainly eats fruits, but loves rice cakes, apple cinnamon are his favorites, GF pretzels.
For meals, we eat ALOT of Salmon and Chicken. With daddy working nights, a Chicken Salad with a bowl of fruit is normal for us. I know this doesn't help much, but I hope it will at least help a tad.
On a side note... Before they knew what was wrong with him, he had alot of malabsorption problems and alot of weight loss. Once I put him dairy free at 5 months he started to show some improvement. I strictly breastfed him for 12 months, when I introduced foods again, he started losing once more. After *mommy put him on a GFCF diet... I have people stopping me saying "my what a heathly 3 yr old you have there" they were quite surprised to hear he's only two. I guess the point I'm trying to make is for us, he didn't get better until we took both dairy and gluten out of his diet.. do you think she may have other problems at hand other than the gluten? Is your doctor willing to work with you to get to the bottom of it? Have you thought about using a dairy and taking out possible problem foods on your own? Of course, this is with the thought that she's been GF for 2 years and not 2 months. either way, she should show some improvement.... JMO

[Guest]

[Kristie]

[aklap]

[duchessisa]

The only definate way to diagnose celiac is biopsy. I know how you feel, My daughter struggled through so much pain and illness until she was 4. I was a wreck, I thought she had cancer, or something they just kept missing, that was killing her spirit and withering her body. It was hard to allow her to be miserable when I knew I could ease her suffering--all to wait for a biopsy which had to be a horrible experience on it's own. Today I can say it was the best thing I could have done. Unfortunately my daughter has other digestive problems and we never would have gotten an acurate diagnoses without biopsy. The biopsy by the way was NO BIG DEAL. Juleah was numbed with cream before the IV and was knocked out before she had a chance to get upset. She woke 45 minutes later, got icecream and juice and was happy as a lark. I was armed with biopsy proof that she was a celiac positive kid two years later when symptoms reappeared. Her GI doctor had to run all kinds of test to find out that she was lactose intolerant and suffers from gastro esophogeal reflux disease (AKA acid reflux). Her celiac damaged villi had repared itself also. It was good to know where we stood and how much she had healed.