Starting To Get Scared Of The Big gluten-free Start Date...it's Hitting Home Now.

[kaiess]

I've been fine since hearing the results of my son's latest TTG. It is so high they said he has Celiac but we are still waiting to hear when the scope will be for official diagnosis (I'm not fighting it, want to make sure ulcers have healed since last year too). So here we wait....one, for the call to set up the scope, and two, for the big gluten free day after the scope. We have decided that it would be easiest if we all went gluten free. We want to be good examples for our son, 9, so therefore will live with the same diet as him. We are also waiting for blood test results on us and our daughter, 5.

I think we'll do fine with the diet and I've even started preparing the kids for the change. I've started teaching them about safe and unsafe products we have in the house right now, as well as fast food safes an unsafes. My son has asked lots of questions (he has Type 1 diabetes also) and he gets it that he won't be able to eat lots of his usual foods after his scope. My daughter on the other hand is 5. She doesn't get any of this I don't know how I will manage school for her. She really doesn't have a medical need to change (that we know of yet) but if we're going to be gluten free then I want her gluten free everywhere too not just at home. How will I tell a 5 year old that she can't have foods at the parties she attends or has at school when she's not even Celiac? How do I get other parents and teachers to treat her as if she does have it too?

Also, I'm starting to feel sad for my kids and our current lives. I feel like I'm grieving right now. Our lives are going to be soooooooo different. I hate cooking but love to bake and I"ve been trying lots of bread recipes (all have failed!!). I also think of my son's future. As a teenager, how will he manage the teasing? Who will want to date someone with Type 1 diabetes AND someone who can't eat anything in a restaurant (not any in our town anyways!!)? Also, I fear for his adult life. The complications he may have due to diabetes is bad enough, now the huge increased risk of Cancer

I know, I know, I have to be positive, just like I've been since day 1. I never got upset about diabetes much and so far I haven't been upset too much about Celiac until today.

Thanks for listening.

[debmom]

First, I wouldn't take your daughter off gluten if she doesn't have celiac or gluten intolerance. We have one child with and one without and it hasn't been too difficult. At home we all eat gluten free, but when he is out or at school, he eats what he wants. You also will find that there are many gluten free options at restaurants-- even fast food ones like Chik-Fil-A and Wendys. In the past year, many of our local restaurants have started giving out gluten free menus and one even has a gluten free Friday. Gluten free food is the fastest growing segment of the food industry, so you will see options grow by leaps and bounds. The difference in the last two years, since we learned about the celiac has been astounding. All our local grocery stores carry gluten free options. We do have to shop at several places to get all the things we want, but that's been the worst of it.

As to the bread, it can be hard to find any good varieties, but we have found that the Bob's Red Mill hearty whole grain is just about the best bread out there, gluten types included. I bake it in a bread machine-- just a normal Sunbeam one-- not a fancy gluten free one-- and we all love it. Their white bread mix is also very good.

Good luck. It isn't nearly as bad as it seems. For us it was actually something of a miracle to go gluten free with my daughter. My sister and I discovered that the ulcerative colitis we had been diagnosed with thirty years ago actually was gluten intolerance. Both of us are free of the "disease" that we had been told we both had for most of our lives. Our doctor who has been odoing our colonoscopies for all those years can't believe the difference in us. He knew little about gluten intolerance (surprising for a gastroenterologist we thought, but maybe not--) but he is learning more now!

[reneelt]

I am in the same spot myself. My 3 year old is in the process of being diagnosed and then the rest of us will be tested. I am also in that grieving spot. How will school be, the holidays, birthdays etc. I am not much help because I am still learning to but wanted to let you know you aren't alone. I will be watching this thread as well because I need input as well.

[lenjac]

I'm the only one with celiac. But my husband and kids eat gluten-free when I cook. My seven year old son is very knowledgable about what Mommy can/can't have and tells people. Your youngest will catch on fast. I work in a school and totally understand your concerns. I would allow your non celiac child to eat (hopefully healthy choices) with her friends/such and try to make your home environment gluten-free. She will learn to like both options and my kids are always trying my snacks over theirs.

For the bread, I still after 4 years don't really bother with it. I don't even miss it.

btw, I used to eat lots of donuts. now I can't even stand the smell of them. your tastes change!

[missy'smom]

As for your son,

Because of his experiences in life he may become a more mature compassionate person and have alot to offer some very lucky girl who will date him for the wonderful person he becomes and she will count herself lucky for meeting a mature person of substance. I went gluten-free first before facing managing diabetes and I find that it helped me manage it better and cope better than if I had tackled the diabetes first. The reason is that when I went gluten-free, I took the focus off carbs, and learned to live on simpler, natural foods and read labels. I didn't know about all the gluten-free replacements at first so I just accepted that I would never have certain things again. I got a few back but with the diabetes Dx it was easier to give up those things again. Now I truely will never have certain things ever again but I'm ok with that. My experience is the opposite as your son's but I hope that will help you think about the switch to gluten-free differently and in a positive way. If you are re-learning to bake anyway you may want to look into recipes that use almond meal as the only flour. It is used by some people who eat lowcarb to manage diabetes because it doesn't spike the blood sugar and it is gluten-free so good for those of us who are gluten-free. I make some muffins with it that I have with my breakfast. I've seen chocolate cupcake recipes out there. Here is a website that offers gluten-free recipes that may also suitable for those with diabetes. Open Original Shared Link Canned pumpkin is another gluten-free carb that doesn't spike the blood sugar so you can make crustless pumpkin pie/custard with an alternative sweetener for a treat. Leaf lettuce can be wrapped around burger patties or sandwich fillings for an alternative to bread.

The wonderful thing about celiac disease is that the villi heal and regrow, so if you stick with the diet you really don't have to worry about cancer and your kids are young so you are catching it early. They will be fine and grow strong and healthy.

You take it one day/event at a time and your kids may suprize you. They grieve and cope in their own way and time and they may not miss things that you think they will. I keep offering my son any variety of buns for his burgers and he would rather have them bunless and is fine with it. Sometimes he'd rather have good naturally gluten-free stuff than many of the gluten-free replacements and there are enough good gluten-free replacements to keep him happy. Focus on the kid-friendly stuff that is already gluten-free-popcorn, fruit leathers, pudding cups, jello etc. There really are so many. Don't think of it as giving up so much. You're just chosing different stuff.

The Celiac community is very supportive, Come back and you'll find help as things come up. You're not in it alone.

[samcarter]

My honest opinion is that you shouldn't ask your five year old daughter to be gluten free away from home. Certainly she can be made to understand that for safety's sake, your own kitchen needs to be gluten free. You can explain that her brother has a serious illness that means regular bread, pasta, and other gluteny foods can make him very sick. And because you want meals at home to be as relaxed and safe as possible, that your kitchen and all foods at home will be gluten free.

But to ask her to eat gluten free--unless she has celiac disease--at her school and her friends' homes, and at restaurants, will be very difficult for her. And she may end up resenting the gluten free lifestyle and, by extension, her brother!

Your son will eventually have to learn that the world is not gluten free, and not everybody eats the way he does. I know it will be hard for him at restaurants, at first, seeing his sister eat her "normal" foods, it was for me and i'm 35! But now I don't even crave the gluten-filled foods that make me sick.

I just wouldn't make a five year old stick to the gluten free diet away from home unless there was a medical reason.

[kaiess]

The reason I wanted to make her go gluten free is b/c we are all going to do it and I feel her behavior may improve on a gluten free diet. I actually won't be surprised to find out she has it too just b/c of her behavior. I know this could be the behavior of any child but her outbursts at home are not normal in my opinion. She will just freak out at the smallest thing like her brother saying "Jadyn don't look over here". She screams, yells how much she hates us, hits, stomps and then when she is placed in her room for a "time-out until she calms down" she will hit the walls and doors so hard I swear one day she will break through them. During one of these you cannot get one word in without her yelling back and the situation getting even worse. When she is not in one of these moments she is the sweetest, happiest, most loving girl ever. We talk when she's not in one of these moments and she says she understand that hitting is wrong as well as yelling at your parents, etc. I've read many threads regarding behavior and gluten and they describe my daughter to the "T". If we try gluten free and it makes no difference then we will allow her to go back to normal diet. If gluten is the culprit, which I'm kind of hoping it is, I'd like to get her started now rather than deal with this behavior as a tween/teen!!

My husband and I will go gluten free b/c I think we'll eat healthier. We haven't really found a bread we like as sandwich bread (toasted it's fine) so we will be cutting out lots of carbs by not eating sandwiches I hope to get us all eating way more fruits and veggies and get rid of all the packaged convenience food in our cupboard.

As for the type 1 diabetes, my son hasn't really had to eat a special diet b/c he is on an insulin pump. Obviously if he's going to eat some fast acting carbs (sugar/candies/juice) we don't allow it unless his blood sugar is in normal range.

I read somewhere that someone offered their child double the gluten free version of a food if the child brought home a gluten containing product from a school party. I can see that working in our house....or giving them money for the gluten filled food I actually plan to have cupcakes in the freezer at the school that someone can get if there is an unexpected party in the class.

Thank you for all your responses. I will take your thoughts into consideration as we decide what to do with our daughter. I know it will be harder on her but I think a trial is needed to see if there is a change or not. On the bright side, we go gluten free right before we both have 1 month off work together. I'm sure in those 4 weeks we can see if there is a change or not in her behavior so maybe by the time she returns to school we will know if she needs to continue or not.

Kathy

[ang1e0251]

I think what everyone is saying is that if your daughter doesn't have celiac disease, isn't allergic to wheat or isn't gluten intolerant, she should eat normally away from home. The behaviour you have described could be gluten intolerance. Then you have a medical reason for her to be off gluten.

You might also try taking her off red dye. That has help the be behaviour of my niece and my friend's grandson, a lot like you are describing. There is a lot of info on the net about it.

As far as the grieving, yes, you will probably will go through that period. But kids are more resiliant than that. They just move on. To them the new diet is the new normal and they take it in stride. Now if you grieve to them and let them think they have a reason to complain, they probably will. Expect them to accept and they will.

I also don't do bread any more. I started off with corn tortillas and just stuck with them. I don't really miss it. I agree that the smell now is repellant.

[samcarter]

I think what everyone is saying is that if your daughter doesn't have celiac disease, isn't allergic to wheat or isn't gluten intolerant, she should eat normally away from home. The behaviour you have described could be gluten intolerance. Then you have a medical reason for her to be off gluten.

You might also try taking her off red dye. That has help the be behaviour of my niece and my friend's grandson, a lot like you are describing. There is a lot of info on the net about it.

As far as the grieving, yes, you will probably will go through that period. But kids are more resiliant than that. They just move on. To them the new diet is the new normal and they take it in stride. Now if you grieve to them and let them think they have a reason to complain, they probably will. Expect them to accept and they will.

I also don't do bread any more. I started off with corn tortillas and just stuck with them. I don't really miss it. I agree that the smell now is repellant.

I agree with ang, red 40 dye was a HUGE thing for my kids. When they do get food coloring (thanks Dad for buying the Froot Loops) I see a big change in their behavior. People like to blame sugar, but i think the dyes in candy are a bigger culprit.

Perhaps just eating gluten free at home, if the gluten is affecting her behavior, will help, if gluten is the case. But first I'd look at dyes and preservatives.

And I also don't miss bread much. I baked Pascha bread for Easter, which last year I was chowing down at Easter breakfast, but this year I had no cravings for it at all. I do miss the occasional cupcake, though!

[bear6954]

My son was 2 when he went gluten free. Prior to that, his main foods were ravioli and spago's. He also liked cheese its, wheat thins, fruit loops etc. For several months, I could not walk down those isles without crying. People prob thought I was weird. But I guess I was sad because my son could not eat the foods he loved. However, now, I dont feel that way. I know the foods he loved were pioson to him and causing him to be sick. My son had classic celiac symptoms and they were severe. I do get upset because many of the gluten free alternatives are not very good tasting or there are no alternatives. I still hate the cookie and cereal isle.

Another thing that has helped me is knowing that other people have allergies also. Many people can not eat dairy, eggs etc. We live in a very small town, so there are no supports groups here. Its hard to deal with it on your own, but I recently read a poem that really helped my put things into perspective. Its out of the a book called The Gluten Free Bible by Jax peters Lowell (I would not recommend buying the book - very out of date). However, this poem is great.

Monday's child is gluten free

Tuesday's child get hives from tea

Wednesday's child can't bear cat hair

Thursday's child must gasp for air

Friday's child will wheeze and sneeze

Saturday's child is eggless, please

but the child born on the Sabbath Day,

fair and wise loves to say,

Thank you, God, that I'm this way.

The poem made me remember that there are many other allergies out there and families that deal with food allergies. I still have my sad days - even 1 yr later, but I work through them. I remember that my son is growing, is getting healthier and feels so much better. He is beginning to understand that he can not eat like other people, but his real friends know that he has to eat different and do not treat him any different. They even make sure they have food at there house that he can eat!

I hope this helps you.

Lisa

[Takala]

For the bread, try getting the hang of a quick bread recipe made without yeast, with a baking soda and apple cider vinegar leavening instead. Once you master one recipe and can get it to come out consistently, then it's easy to expand on it. When you bake, use a smaller pan than a 9 x 5", the smaller pans tend to have the loaves bake through more easily. Always test the bread before you pull it out completely, by sticking a table knife thru it to the bottom, then pulling the knife out and seeing if it is clean or has sticky residue on the bottom, if sticky, put the bread back in the oven and bake some more. BAKING TIMES MAY VARY FROM LOAF TO LOAF and will vary further because of the different types of flours used and ovens all heat differently.

I use a pre heated 8" cast iron skillet with olive oil to make small round quick breads with crust that doesn't even need xanthan gum. I cook it on the stovetop and then run it under the broiler to finish. I also make a variation to make a pancake or flatbread or pizza crust. The same recipe, doubled to use 2 cups of gluten-free flours instead of one, makes a 4 x 8" loaf of quick bread.

I experimented with adding different nut meals and seeds and the heartier gluten-free flours to get something resembling whole multi grain wheat bread, it's pretty dense compared to regular white bread with rice and tapioca, but I wanted high protein and something that would be nutrient dense compared to volume. The original recipe called for yogurt, which I also have successfully left out sometimes and just used different liquids with vinegar.

This is the basic template recipe here:

Open Original Shared Link

Yogurt and Honey Quickbread

This is how I tweaked it:

Don't use Bean flours in the flour mix. I don't have a problem with them but sometimes other people I'm feeding this to, might.

Used real eggs instead of egg replacer, egg whites, etc. Sheesh.

Used more baking soda instead of baking powder.

Omit lemon peel.

Used honey instead of sugar, and/or agave and /or molasses for taste.

Used olive oil instead of melted butter

Used apple cider vinegar instead of dough enhancer, and used more of it

Sometimes I don't use yogurt but instead other liquids with vinegar

added nuts and sunflower seeds

I also have never gotten this to be done at the 60 minute point, altho I check it then and continue baking in 5 to 10 minute intervals

Given all that, it still comes out. This is a recipe than can take a lot of abuse.

_____

Quick Yogurt Bread variation: No Yeast, No Fuss

dry ingredients:

2 cups of a gluten free flour mixture of your choice (may be part nutmeals, such as using a half cup almond meal in the mixture )

1 to 1 1/2 teaspoons zanthan gum (may decrease or omit if using a lot of almond meal and amaranth flours )

1/2 to 3/4 teasp salt

2 teasp baking soda

3 tablespoons sugar OR sugar substitute such as honey (if using honey or agave, which are sweeter than sugar, 3 tablespoons total may be enough, and add it below to the wet ingredients )

pinches of spices, such as cumin, cinnamon, etc.

Optional: 2 tablespoons of sunflower seeds, steamed millet seeds, and/or other nuts or seeds to your taste

__ wet ingredients:

2 eggs

3 tablespoons olive oil or melted butter or shortening

1 tablespoon honey (see above)

1 teaspoon to 1 tablespoon apple cider vinegar, depending on whether yogurt is used

3/4 cup gluten-free yogurt (or other gluten-free milk substitute with vinegar added, if not using yogurt )

More liquid to make the dough a thick batter- will vary, maybe 1/3 to 1/2 cup water

Preheat oven to 350

[sugarsue]

GOOD LUCK with it all! I know it's overwhelming. When we had to start the diet, I could not imagine how I would control everything they put in their mouths. But it all worked out.

My 7 yr old seemed to be very sensitive to dyes. But then she went gluten free and now she can tolerate the dyes much better. Gluten and dairy are definately her behavior triggers. We still try to stay away from the dyes. I agree that they are worse than sugar for behavior!