What Was The Hardest Item(S) Of Adjustment That You Had To Go Through W/ Your Child?

[macocha]

Was it label reading? Was it finding gluten-free foods that were actually tasteful?

I haven't even started. Wanted to wait until his GI appt so we don't alter results by going gluten-free now.

I am so scared I won't be able to do this. It is hard enough that I have one child that we have to watch for fructose intake.

anything someone told you that just stuck out that you would like to share?

With a family of 8 (6 full time and 8 part time) it seems overwhelming to have three separate diets or even four (dh is lactose intolerant) for the fam and maybe just doing one diet (gluten-free) would be the best choice with alterations for the fructose child.

[tarnalberry]

Going dairy free was far harder than going gluten free for me.

Really, it seems like this big scary change, but, IMHO, that because most of us get ourselves stuck in this rut of eating the same things over and over and don't put creativity into our cooking. (That's not meant to be finger pointing at anyone - heavens knows that I've done it, and do it on occasion too.) Even with multiple things off your list, there's no reason that the family can't eat the same meal. (I cook for my friends often, and we all have our own "thing". My husband can't stand a number of foods (particularly tomatoes), some friends are vegetarian, I'm gluten and dairy free, sometimes we've got a very low-carb eater at the table, or a very low-fat eater... Creativity gets us around these things, though it often means introducing foods or types of cooking we haven't tried before.

I felt very sad giving up sandwiches, but I have yet to find a bread that is suitable for the sandwiches I make. But I eat other things than sandwiches now.

[chasing4]

When my daughter was going through the diagnosis process, my friends and family all kept telling me "If she has Celiacs, she's not gonna be able to eat much". But actually, after her diagnosis, I found there are so many things she could actually eat, and very tasteful too. I even may steal a piece or two of her pizza.

[nmlove]

Oh yes, definitely agree it's a mindset. If you like to cook and try new things, you'll be ok. The ones who seem baffled that there is food for us to eat are the ones who eat a lot of processed foods and eat out a lot. We however, only ate some processed foods so we transitioned pretty easily. I did hate the initial reading of labels. Mostly because I was dragging three young ones to the store with me. And I was already checking for dairy/soy for myself (which I dislike avoiding way more than gluten!).

The things I find helpful are the main dishes are dishes everyone can eat. I may have cheese or something to add for the others (I can't have soy or dairy) but most dishes are available to everyone. Pasta is more a treat now rather than a staple. Desserts are a treat as we bake nearly everything we consume. I rarely buy gluten-free treats. One, the expense and two, I can make some much better food at home. Writing a menu out is great for the budget (gluten-free or not) - keeps you on track and you know what you're having so you don't get stuck in a "what's for dinner?" crisis which is not good with this diet (at least for me). Stick to whole foods for a bit (meat, starch, fruit, veggies). Pick out a few favorites to try to find a recipe/brand you like. For us that was cereal for the boys, pancakes, one dessert.

Oh, I skipped the bread. Once in a while we'll get a loaf or bake a loaf. The kids like it well enough. It's just ok to me. Instead, I like making a very simple wrap in place of my bread. And it makes a pretty tasty pizza.

Five months down the road, the hardest thing I'm dealing with now is cross contamination.

Good luck!

[ryebaby0]

Hardest part was learning which advice to trust --- there's quite a bit of bad information out there to stumble across. The diet is not so bad as you imagine, nor are the birthday parties, etc.. Just don't try to do it all at once! We just gave up on bread (like for sandwiches) as not worth the bother. Keep an open mind and if you like to cook, it can be a fun adventure. The first 6 months are definitely the challenge, and then one day you wake up and realize it has just become part of what you do. You can SO do this!!

[macocha]

thank you all!

[Mother of a Celiac]

thank you all!

Our daughter was just diagnosed 3 weeks ago and we have 'made the leap' into the gluten-free world. I have decided that our house has to be pretty much gluten-free because it is just too hard to deal with the cross-contamination. My husband and I still have wheat crackers that we eat VERY carefully and clean up very well after we eat them. I also keep a loaf of wheat bread in our freezer that we use for occasional sandwiches. Luckily our daughter was never really a big bread person anyway. We just had to do a birthday party for our other daughter, who is not Celiac, and made the new Betty Crocker cake mix. NONE of the kids knew it was any different and loved it!

The hardest thing so far for us has been limited options eating out, like today we went to Uno's after church because they have a gluten-free menu, but the pizza is really bad, their french fries are not gluten-free and after allowing our daughter to have a couple corn chips which I assumed where gluten-free, we found out that they weren't and sure enough, she has been itching all night and has a headache.

The other hard thing is managing school and parties there. It makes me sad that our daughter can never have the treats people bring in. I have notified her teacher, who is wonderful about everything, and think I will just volunteer to be the one to bake the goodies for the

holiday parties at least. That way EVERYONE can have them and no one is singled out. That is really hard for me, but our daughter has been so good about it.

Once you get your mind set and the adjustments made, it really is not that hard to substitute ingredients, etc. It just takes a lot more time to make things that I would have normally bought. On a positive note, at least our family will not be eating processed or fast food anymore. Our kids will grow up eating healthier than most!

[T.H.]

At first, label reading consumed most of my time and felt like the hardest thing. THEN it was trying to find recipes we could use. And I would say that the latter has continued, especially as we've become a family with multiple food issues, too. Trying to find stuff that took all allergies and issues into account was a very time consuming process. I would honestly suggest that if you know the food issue is likely to come up, start looking for recipes now, so you won't feel so stressed about finding them later when you have to use them, you know?

My son has issues with corn, eggs, and gluten. My daughter has issues with gluten. Both kids seem to have issues with fructose as well. My husband has issues with milk and bell peppers.

At first, I tried to have a different diet for the different family members, but I quickly changed that. It's very difficult to do the different diets, and somehow, we always ended up with one of the children deciding that the food the OTHER child could have was infinitely better than the one that they had. Fights started, cries of 'it's not fair!' were constant.

So now, everybody has to eat the same thing. There are a few times when I'll make an exception, and everybody gets some special dish that they can have, even if no one else can. But so far, eating the same has made things much better, and it helped the kids appreciate what their sibling has to live with.

Our mantra, at the beginning, was 'it doesn't have to taste good to make you not hungry.' I don't WANT it to taste bad, of course, but they had a hard time adjusting in the beginning, so that helped. It also helped when they realized the parents couldn't eat things that the kids couldn't eat, you know?

Good luck to you!

Was it label reading? Was it finding gluten-free foods that were actually tasteful?

I haven't even started. Wanted to wait until his GI appt so we don't alter results by going gluten-free now.

I am so scared I won't be able to do this. It is hard enough that I have one child that we have to watch for fructose intake.

anything someone told you that just stuck out that you would like to share?

With a family of 8 (6 full time and 8 part time) it seems overwhelming to have three separate diets or even four (dh is lactose intolerant) for the fam and maybe just doing one diet (gluten-free) would be the best choice with alterations for the fructose child.

[ryebaby0]

"The other hard thing is managing school and parties there. It makes me sad that our daughter can never have the treats people bring in. I have notified her teacher, who is wonderful about everything, and think I will just volunteer to be the one to bake the goodies for the

holiday parties at least. That way EVERYONE can have them and no one is singled out. That is really hard for me, but our daughter has been so good about it."

It's fine to bake the goodies for now, if it helps you make it through, but many schools are moving towards a "healthy snack" kind of policy, so fruit, veggies, water, etc... are always good choices that tend to suit everyone. And other people can bring things that are gluten-free (tostitos. Gogurt. popcorn. hershey kisses) Also, remember that lots of kids can't have everything --- the peanut, dairy allergies, the "i hate chocolate" kids or the "it looks squishy" kids --- your daughter won't be the only one who can't have it all. A stash of things she can eat, kept at the school, will be enough to make you both happy.

[kareng]

Oh, I skipped the bread. Once in a while we'll get a loaf or bake a loaf. The kids like it well enough. It's just ok to me. Instead, I like making a very simple wrap in place of my bread. And it makes a pretty tasty pizza.

Do you have a good recipe for a wrap. Funny thing is: I have never been a big bread or bun eater before gluten-free. I love a wrap/tortilla to put sandwich, salad, leftover stir fry into. Found some rice tortillas but they are so flaky & can't wrap them.

[kareng]

The other hard thing is managing school and parties there. It makes me sad that our daughter can never have the treats people bring in. I have notified her teacher, who is wonderful about everything, and think I will just volunteer to be the one to bake the goodies for the

holiday parties at least. That way EVERYONE can have them and no one is singled out. That is really hard for me, but our daughter has been so good about it.

Once you get your mind set and the adjustments made, it really is not that hard to substitute ingredients, etc.

We had a kid with diet issues but all the kids knew & most kids & parents wanted to bring treats that kid could have. Popsicles! Especially in Jan, Feb are a real treat.

Our mantra, at the beginning, was 'it doesn't have to taste good to make you not hungry.' Good luck to you!

I love that!

[buffettbride]

The hardest part for me was just getting used to the new shopping tactics and costs. I cried my first time to the grocery store after her diagnosis because it was SO overwhelming and felt hopeless.

The next hardest part are the stupid pizza parties at school. Hate them. Still do.

[kaiess]

My son,10, was just diagnosed Thursday evening and we started gluten-free yesterday. For us it's changing our kitchen. I'm going to eat gluten-free too and my daughter will eat gluten-free at home. My husband will eat mainly gluten-free but still have his stash of a few things he really likes. I went through the cupboard last night and got rid of all products I could clearly tell were glutened. I have a pile that I can't tell for sure and am asking questions on mailing lists for answers. Problem is, I get different answers from different people! Calling companies is a major pain and I'm often on hold for a while only to get the answer "we don't add any gluten but we cannot guarantee that our suppliers product is gluten-free". It's frustrating. But, on the other hand, I'm amazed at how many mainstream products out there ARE gluten-free just not advertised on the label. I can't cook and have zero creativity with food so my hardest part is going to be cooking. For Jakob I think the hardest will be not having the typical fast food with his friends like McDonalds, Pizza Hut, Subway as well as the treats people bring to class. There will have to be a lot more planning in our lives as far as travel b/c we live in the boonies in Canada with very little chain restaurants, never mind ones that know what gluten-free is! Lunches are hard now too. We can't just open up a can of Alphagetti and get out the door. I fed them Campbell's Chicken with Rice yesterday and today I made pasta noodles with plain old spaghetti sauce (20 minutes vs 2 minutes Alphaghetti!!). I just wish I had more time in my day!! I know a year down the road it'll be normal to us b/c that's how it was with my son's Type 1 diagnosis 6 years ago. We go through the stage of shock for a while then the learning and then it's just normal.

Good luck with everything!

Kathy, mom to Jakob, 10, Type 1 diabetes Mar2004, Celiac Mar2010

[Juliebove]

For sure it was the pizza parties! The school was having them every time I turned around. When she was younger, she couldn't have dairy or soy either. So there was no prepared pizza she could eat. I bought a pancake warmer. Like a tortilla warmer but larger. I would make a single serve pizza for her, line the warmer with foil, put the pizza in and take it to the party for her.

Then when she got older and I got more crochety, I would just make the pizza and send it in for her to eat cold.

At least now she has outgrown the dairy allergy. I can buy an Amy's pizza, bake it and send some of that for her to eat.

Cookies and cupcakes at school and other parties are another problem. Luckily she likes the Enjoy Life cookies so I keep plenty of two packs of those onhand.

Bread and rolls were a problem. Took a while to find some that she liked. These days she likes the Ener-G Rice Starch Loaf. I order it from them. I get a few whole loaves for those weeks when she is eating a lot of bread. It will keep in the fridge for a week or so. But most of the time she uses the 2 slice packets. Expensive but less wasteful.

It is still upsetting to her to go out to eat and have people eating rolls all around her when she can't have any!

But the biggest problem for me was the waste! And I wasted a lot! I bought every cookbook that sounded like it would work. Well... We have other food allergies so I was lucky if any given book would have a recipe or two in it that we could actually use.

And when I got those books, I rushed out and bought some of every kind of flour, gum, and every other weird ingredient I saw listed in there. Surely I would need them?

But guess what? Most of my gluten-free baking turned out to be a flop. Oh the hours I wasted making bagels and breads. I even bought a bread machine. Now granted our additional allergies could be partly to blame here. Couldn't make breads with eggs or dairy in them. But very little worked.

That stuff all went bad and I had to throw it out. But then I would spy a recipe for something I didn't have. I'd buy it. We wouldn't like it. I'd have more of whatever kind of flour, taking up cupboard space.

Then she won the Bob's Red Mill gift package at a local health food store. Nice, but... I never used most of that stuff.

I cleaned out my cupboard once again today and filled a black garbage bag with expired flours and mixes. It was so heavy I couldn't lift it. We had to divide it between three bags to take it out. Bad!

Today I replaced some of the expired stuff and once again vowed not to buy so much. Mostly I use Sweet Rice Flour for gravies. I use either brown or white rice flour to mix in with gluten-free oats for apple crisp. A four flour blend for general baking. Occasionally another flour, which I will not buy unless I know I'm going to use it! I buy Betty Crocker and sometimes Namaste Mixes. I know they work and we like them.

I also fall into the trap of ordering tons of stuff online and this used to include the flours and mixes. Or stuff I see in the stores. Daughter is no better. Always pointing out that it says gluten-free on the label. Well, just because it says that doesn't mean she will eat it!

I like that some of the stores in our area have gluten-free fairs. That way we can try some of the products before we buy them. I get tired of stocking up on stuff that nobody will eat.