Modified Food Starch

[HeatherMelissa]

Well, for about three weeks now, we have slowly been removing the gluten from Gabby's diet. Now, she barely eats anything. Yesterday she had 4 oz of yogurt, 4 oz of applesauce and 3 oz of pudding. We don't let her have her goldfish crackers. Her only other food was (that she ate for lunch and dinner) a bean soup from Campbells. Their food starch is either corn/potatoe or wheat, whatever is one hand. I have tried making beans at home and she will not eat them. One bite and she spits them out..."done done done" she tells me. She is extremely finicky about what she eats. This has been her menu for the past year now. That is what started us on this journey. She has some sensory issues due to her Down syndrome.....anyhow....on to my questions....and please don't slam me

*If the ingrediant listing says : Less that 2%: MFS and a few other things, is it less than 2% of each or all the following ingrediants totaled?

*What if I limited the amount of broth she got and just gave her the beans form the soup?

I am desperate for her to eat. Our whole lives are revolving around what she eats. Every converstation. My husabnd just called today from Mexico at $3 a minute just to see if she ate yesterday. Her attention span is limited becasue she is so hungary and she goes around licking her hands for "something." I wish there was something else I could do.....any help at all?

[tarnalberry]

What about other kinds of beans? Bush's baked beans I've heard are gluten-free. Regular canned beans spiced however she likes... I mean, there are so many ways to make your own, that I wouldn't give up just yet!

The less than 2%, I believe means less than two percent from each item.

But if it could be made from wheat, you're playing with fire. I'm not trying to slam you - I understand that she's got to eat something. I just want to express encouragement to continue trying new and different things. I'm sure there are at least two or three dozen varieties of beans (just beans!) that you can find to try (some store-bought, some homemade...).

[celiac3270]

How old is Gabby? If she's old enough to like homemade Choc. chip cookies, I just found the BEST ones....better than the old wheat kind of homemade cookies. If she's just starting solid foods, there's an arrowroot cookie made by Mi-Del....it's not my favorite; nowhere near the same league as my chocolate chip cookies , but something that's rather bland, etc....the kind of simple cookies, you might start a child on, I guess......I eat them when I'm not feeling well. How about chips? Frito-Lay, as I'm sure you know, has an extensive gluten-free list. The foods I listed may not be the healthiest , but as you're desparate to get her to eat anything, it might be good to try foods that she'd find really tasty.....

"Less than 2% of the following" does mean less than 2% of each item, not the total amount. Also, modified food starch could contain wheat, so make sure you've called the company.

-celiac3270

[HeatherMelissa]

I will keep trying other beans......I am getting the Bush's tonight. Thing is if they don't look like what the other ones do, she just won't eat them.

Thanks for the other suggestions. I am sitting here crying right now. We are talking about a girl who has never had a bite of birthday cake, eaten cereal in the morning or ice cream at night. She just won't try anything. We have no idea why. We offer her anything and everything. Things I said I would never let my 2 year old eat. I don't care now, I would love for to eat anything. Never had a cookie, cracker (other than goldfish) or other treats. She literally eats yogurt (one brand, one flavor) pudding (one brand, one flavor) applesauce (one brand) and her beans. I am going crazy. This whole gluten thing is killing me. It would be fine is she was willing to try other things....... I am at my wits end. I just want her to eat and be healthy.

[GFdoc]

Heather - don't cry, honey...it will get better - try to be patient!

As a pediatrician and a mother of three kids, I can tell you that feeding a stuborn 2 year old is no fun... of course, you have down syndrome and celiac added on top of that which makes you feel completely overwhelmed, I'm sure.

First of all, just looking at the photo of Gabby on your post (I'm guessing she's on the left) reassures me that she looks well-nourished enough that some days of not eating will not cause an emergency situation. Many 2 yr olds just don't eat much at all, they don't need to because they aren't growing as fast as they did as infants. If you get one meal in per day, consider it a good day!

Next, don't feel guilty that she won't eat birthday cake or other junk...she won't miss it if she doesn't try it! Plus, it's junk anyway...no great loss.

Most importantly, she needs some better nutrition - more than yogurt, applesauce, pudding and beans. She's doing fine on the dairy, but needs some fruit/veggies in her diet and some protein and fiber. The beans are a good choice, but you are having trouble with the gluten-free ones, it seems. Does she take a multivitamin? If not, she should. If she won't take a chewable, try a liquid one (poly-vi-sol is one brand, please check gluten-free status) and hide it in her pudding or yogurt or applesauce. Another option is to get a powdered nutritional supplement (such as ensure/pediasure, again check gluten-free status) and mix it into her food. You can also add a pulverized egg to the foods.

Work with your speech therapist on oral motor sensory issues...it may be that she doesn't like the sensation of new things in her mouth.

Lastly, don't follow her around the house begging her to eat. It sets up for a behavioral issue. (toddlers like to try out saying "no" and eating is really their only choice in life.... until toilet training anyway) I suggest setting the table at meal times with the foods you select and if she doesn't eat, so be it. She can't eat again until the next meal. (I'd allow 5 smaller meals per day for a toddler, not 3) I don't know what her developmental ability is from your post...so obviously, there may need to be some adjustments made...talk to your doctor about it, or work with a counselor who knows about down syndrome.

Good luck, and hang in there! Get some help if you can (parents, inlaws, adult babysitters, etc.)

Sara

[tarnalberry]

This is probably a stupid question, but I didn't know the answer, so I thought I'd ask...

Do you _repeatedly_ try the same food she's refused? I don't mean in the same day, but let's say she doesn't like item A when you try to give it to her. Do you then have yourself (and/or the rest of the family) have some of it off an on, and then try introducing it to her again two weeks later? And repeat that four or five times?

What I'm thinking is that sometimes, something that's new and strange (be it look or smell or taste) is new-bad and strange-bad. So if she sees it the first time, and refuses it, she'll have come to see what it looks/smells like. As she sees you (and/or the rest of the family) eat it, she'll understand that it really is food other people like. And as she has it offered to her repeatedly, it will be less new and strange.

I suggest this based on two experiences (and you wouldn't think they'd have much in common): my pet bird and my husband. Both of them can be picky around scary new food (my husband FAR MORE SO than my bird!), but repeatedly offering makes a difference. (I've gotten my husband to try things that he never thought he'd eat... It took a while, but every once in a while he'll be willing to try something new and that's my window of opportunity.

Of course, like I said, it's probably a stupid question as to whether or not you're doing that - you're a concerned mom and I imagine that you know all that already, but I thought I'd ask. :-)

[GFdoc]

Good point Tiffany! Most kids need multiple exposures to a new food before they are willing to accept it. I think for Heather, though, it's going to be more difficult because of Gabby's developmental issues.

Sara

[judy04]

Dear Melissa,

I'm sorry that you are having such a hard time. This condition is hard

enough for an adult but it must be terrible for a mother of a sick

child. I was wondering if she ever eats around other children, thats

how I got my children to eat new things. Most children like milk and

cereal before going to bed at night. My sister-in-law always had

tea parties when she took care of my children, she had a little tea

set and made a "big deal" about it before putting them down for

a nap. My kids are in their thirties and still talk about the way Aunt

Carole made them scrambled eggs. I guess what I am trying to say is

try to relax and make meal time a fun thing. Try cutting up hotdogs

and putting a face on them, or maybe you could all make cookies

together. What about finger foods, hotdogs, berries, bananas. Most

children like chicken noodle soup, maybe a homemade soup with

chicken and rice. Please try and relax, she isn't starving and she will soon

be over this phase and will be eating you out of house and home..

[HeatherMelissa]

Thank you so much for all your replies. I really appreciate them.

We have been dealing with this (the eating) for over a year now. We truely have tried everything. We give her options, let her play with it, have her help bake, keep offereing and offering, let her feed Lucy etc......everything. She just will not try anything. And it's not a matter of being stubbon. You can tell, she is very afraid to try it. Even when she had her endoscopy and colonoscopy, she went 48 hours without eating. We offered jello and juice the whole time and still refused. She was starving and still refused. So, when she was diagnosed, my doctor and I agreed that it made perfect sense.....sometimes your body will tell you not to eat something that will make you sick. The doctor thought that once we got her feeling better, she'd be more open to eating.

Tonight I tried the baked beans, and her regular beans. Would not eat anything. She was alsmost crying. You could tell she wanted to eat, but just couldn;t make herself. It was very sad.

I am calling the ped and nutritionist in the moring.

She does take a multi vitamin. (grrr...gotta check to see if they are gluten-free) and I wll look into the nutrional supplement. She does great with non food items in her mouth in regards to oral motor.......

I'm at a loss.........

On top of my emotional state, the cashier at the store went on and on about how cute Lucy was and Gabby was, in his words, "well, you know" Some people are beyond ignorant.

[hapi2bgf]

As the Mom of another extremely picky child, I understand your frustration. I got lectures on how to feed a nutritionally balanced diet from our pediatrician everytime I asked for help making my daughter eat. We also tried begging, pleading, praising, punishment, you name it but nothing makes a toddler eat when they do not want to. My daughter would also rather starve than eat something new. She would just cry or put her head on the table and eat nothing.

For us, it took about two months of fighting at every meal , but she is finally starting to eat with less fighting. My theory is whatever she will eat, give it to her in bulk until you think she may try something new. Eventually they start to try new things. Eventually they grow out of this stage.

It is really hard to watch, but just keep trying new theories and something will work out for her. Good luck!

[ryebaby0]

I had a picky (picky doesn't do it justice, does it!) eater too, and I know you are tired of advice that you have tried and failed with--- hang in there. I have cried many many tears at the kitchen sink. Do you have a play therapist she could visit? I think sometimes the transition to gluten-free so often is precipatated by a crisis that children start to feel that food isn't safe,or they are being punished, so they just will eat what makes them comfy. Another suggestion to try: leaving a plate of food out, without comment. Even if she doesn't eat it, if you left the same items out for 10-14 days just to look at, maybe she could get accustomed to it without the pressure of expectation to eat it. Or cut the food into tiny bits. We used to serve our picky guy things with a toy tea set (he was freaked out by the amount; a tiny portion was less intimidating)

And one last morale booster: my 16 yr. old nephew has, for his entire life, only eaten the following foods: milk, chicken nuggets, bananas, carrots, homemade waffles, ore-ida tater tots and saltines. And I mean ONLY those-- no pizza, hot dogs, soda, etc... He was extensively tested with no results; nobody understands it (not even him, and he has no explanation except "I don't like that stuff and I don't want to try it") He doesn't have high cholesterol, he does take vitamins. He is 5'10" and normal weight.....

You are the perfect parent for her. No one else will love her more, care for her better, or find the solution without your insight into her. Hang on~

Joanna

[mom2sidkid]

Hi! I don't post frequently at all, mostly lurk, but I had to reply.

I have a 5 yo dd who is celiac, SID (orDSI,which ever you prefer), and ADD.

Have you spoken to an OT about an oral brushing program? It will help. It will take time, but it will help.

www.missroben.com sells a mock gold fish cracker mix, maybe it would be worth a try.

Believe me, I know how insensitive people can be.

[DawnI]

I have a picky eater too,,,,,she will eat when She is hungry, maybe give her a couple choices on the table, she might select something....even when you Aren't urging or looking......

She looks so healthy - dont worry about the Eating.....Soon as with mine you will Say WOW where are you putting all that food.

Mom to

Sean age 11 Celiac 1 yr dx

Hope age 4.5 celiac 2months dx

lost DH to undiagnosed celiac disease that went into lymphoma in March '03