Mom of child with celiacs looking for support

[Guest guest]

Hi Libby,

This is a challenging time. My older son was 2 when he

started eating gluten-free (he is 19 now). I would suggest starting

gradually and not focusing on the small stuff right away. It is

overwhelming to try to be perfect with every little thing all at once.

Take a top down approach with the major items first (obvious gluten), working

gradually to the finer points (new pans, toaster, hidden gluten, cross

contamination, etc.). That’s to keep your stress level down

and you sane. Don’t try to be perfect on the first day or even the

first month. Think of this as a process.

Is everyone in the family eating gluten-free or will some continue

to eat gluten? If there is no gluten in the house, that means less

concern over cross contamination. If there is gluten, that means more

care must be taken to separate ingredients and prevent cross

contamination. Some families continue to have some gluten products in the

house but no actual baking or cooking (such as making cookies, cakes, or bread)

with gluten. The reason for this is that airborne gluten is hard to

control.

The 11-month-old will be easy, as they will not have lots of

favorite food to miss. Is that child going GF because of the whole

household being GF or is there suspicion of CD there as well?

You will need to find substitutes for her favorite foods that your

child likes. You will need to start thinking out of the box and trying

lots of different things until you find foods that match her tastes. The

good thing is that there is now a huge variety of GF foods out there that you

can find by searching the internet. You may need to try several different

kinds of crackers to find one she likes. If you can’t find a

commercial type she likes, you might consider baking a substitute cracker,

bread, or cookie to suit her tastes.

If your daughter is old enough to understand that gluten makes

her sick, you need to make that connection when she asks for her

favorites. Tell her that the fishy crackers are what is making her sick

(be specific about whatever symptoms she has so she connects the particular symptoms

with the food). For instance, “The fishy crackers are what is

making your skin itchy, so we are going to try some different crackers that won’t

make you sick.” Make sure she knows that if she doesn’t like

something you will keep trying until you find foods she likes to eat. When

Bryce was little, we made a list called “Bryce’s menu” that

listed his favorite foods. That helped him (and us) to remember that he

had tried and liked a particular food, and also helped him feel a measure of

control over the process. Foods often went on and off the list.

Here are a few suggestions for kid-friendly foods:

The first thing you will notice about the GF diet is that most

of the GF bread out there is unpalatable unless it is heated or toasted or

freshly made. Happily, there is one exception, which is Udie’s

bread. It actually makes sandwiches people want to eat without having to

have the bread be warm.

Ian’s chicken Fingers dinners (frozen)

Snikiddy

Snacks might substitute for the fishy crackers (I haven’t tried

them, but they sound similar to the Fish crackers).

There

are several varieties of kid-friendly pasta out there, including several

varieties of mac and cheese, frozen and boxed.

Just

the cheese snacks are baked cheese bits that are very good.

We

like Nut thins, San-J, and and sons crackers (don’t get Sesmark;

they have cross-contamination problems).

Mrs

May’s makes several kinds of nut snacks.

Make

sure to have on hand plenty of fresh fruits and vegetables (sugar snaps and baby

carrots are great kid favorites) to offer.

Try

to find a food bar that she likes so that you can have some handy for emergencies.

(This is also a good thing to have for the school’s emergency supply as

well.)

Make

sure to find a pizza crust or crust recipe that she likes; pizza is a universal

favorite for most kids. There are many pre-made crust out there these

days, as well as packaged mixes; I have a recipe for pizza crust if you

need one (anyone who wants it can e-mail me off-list and I will send it).

If you want specific suggestions for GF substitutes, recipes, or more

information about what is GF, feel free to ask.

When

you are away from home, you will need to make arrangements depending on the

situation. On a play date, if you know the family well, you might want to

ask them to hold off on the fishy crackers for a while until your daughter

finds substitutes she likes. Maybe you can bring a variety of snacks to

share that are gluten-free. If you have no way to control the food

available, you will need to watch closely until your daughter understands what

she can and can’t eat (always reminder her in a calm way why she can’t

eat the fishy crackers). For birthday parties, I generally supply my kids

with their own GF cake and make sure the ice cream is GF (watch out for cake

crumbs on the ice cream scoop); I usually contact the host ahead of time and

let them know the situation. I ask what they will be serving and let them

know that I will bring GF substitutes for my kids.

Remember,

gluten-free doesn’t happen in a day; it’s a process. As

upset as you may feel when your daughter is frustrated, give her sympathy and

understanding and try not to show her your own distress. Now is the time to

keep stress to a minimum (if there’s anything in your life that you don’t

really need that causes stress, consider taking a break from it; it’s

also not the time to get a new puppy). Keeping stress down will help your

daughter heal and will reserve your strength for maintaining calm when helping her

learn this new lifestyle. Enlist any friends and family that give you

support to help with this project. You may even discover others you know

who also eat gluten-free that can help. Remember that this is a

transition, and as hard as it may be right now, you’ll get through it.

Pam

Newbury

From:

[mailto: ] On Behalf Of Libby

Sent: Wednesday, August 18, 2010 1:47 PM

Subject: [ ] Mom of child with celiacs looking for support

Hi I am Libby from Gilroy and my almost 3 year old was just

dxed through blood and biopsy with celiacs. So I am looking for some advice on

where/how to start. Especially of familes with multiple kids all went gluten

free. (I have a 11 month old as well).

And how do you explain to them that they cant have their buddies goldfish at a

playdate? I am really worried about going to parties and just friends houses in

general.

Thanks