Daughter with Celiac

Updated on February 13, 2007
K.K. asks from Aurora, CO
8 answers

We recently found out my 10 year old daughter has celiac and changing our home to Wheat & Gluten free has proved itself more difficult then I thought! Anyone with advice on how to make this transition easier on all of us would be great. Also looking for a celiac support type group that focuses on children

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B.

answers from Denver on

This is an awesome website for gluten free foods
http://www.kinnikinnick.com/
I sympathize with you -- I have a daughter whom I believe is allergic to wheat and my husband is also going to get tested for celiac disease this month. Let me know how your progress goes and what you find!

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J.B.

answers from Salt Lake City on

I know how you feel. I am 25 and was diagnosed just after my two year old son was born. The day I was told I went through all my cupboards and the fridge and pulled out everything I could no longer eat - it turned out to be the most depressing day of my life. There was no food left for me to eat and I was so hungry. I ended up loosing so much weight that it became a concern - I didn't know what I could eat and I didn't know how to make gluten free meals. Anyway, undoubtedly it will take a while for your daughter and you and your family to get used to the gluten free lifestyle.

I get most of my recipes from searching for gf meals online (there are thousands) and from gf cookbooks that I have found at Barnes and Noble. The two authors I have books by are Robin Ryberg and Bette Hagmann. I'm sure there are others but I have yet to try them.

There are some great stores also. The store Against the Grain in Taylorsville is 100% gluten free. Everything in the store is safe to eat and they have everything from chicken nuggets to waffles to different flours to use to treats to 72 hour kits! It's a fabulous store. The address is 2292 W 5400 S. The owner's daughter has celiac and is about the same age as yours. Another store is Good Earth on 9th East in Sandy (it's across from a school but I don't know the south). They have a gluten free isle in the store and there is also some good rice bread called Charlottes that is refrigerated. (You'll find that all rice bread is dry but Charlottes seems to be the best so far.) Wild Oats actually doesn't have much for celiacs so I don't frequent that store much.

I am being totally honest here, I am the only one in my family that is diagnosed with celiac and I never feel included when I go to my parents house for dinner. My mom always seems to make dinner a huge stressful ordeal and usually I end up bringing half of my own dinner because she doesn't want to learn to make gf foods for me or she doesn't have a gf brand of dressing or something. (And she has actually told me she doesn't want to learn.) Since I was diagnosed two years ago, the only times we have been to her house for dinner is once during the holidays whereas before I was diagnosed, we had dinner with them once a month. The fact that everyone in my family constantly tells me how sorry they am for me and how they hope they never have to go through what I go through makes me relapse into the depressed stage. Unfortunately, because of the way my family has handled this, I feel completely left out and many times I start hating myself for having the disease. I'm telling you this so you can avoid these frustrations and feeling of lonliness with your daughter. My personal opinion is in order to make your daughter feel "normal" make one meal for everyone - don't make a seperate meal for her. That works for some people, but you should wait until she is comfortable with her new diet and doesn't feel "different" when she's not eating the same things as everyone else. All of the meals I make are gf and my son and husband eat the same thing I eat - once again, it makes me feel "normal". The meals are just as good as meals with gluten and they tend to be much healthier because everything is basically from scratch. If other members of your family complain about eating "weird" food, make sure they understand that your daughter needs to feel included and not looked upon like she has some gross disease. Of course there are things like pizza and rolls and such that they will want to eat that she can't but she also needs to know that her siblings shouldn't have to give up everything they love just because of her diet either. Hopefully she will be better than me, but it took me a long time to understand that I can't make my husband not eat girl scout cookies just because I can't - he just has to leave them at work so I don't see them! As far as desserts are concerned, I have a few recipes, you can find some one the web or from books, but since she won't be able to eat dessert with everyone, my mother-in-law found a way to solve that problem - she makes a big batch of gf brownies, cuts them up and freezes them. Then when I come over, she can pull one out and thaw it. I have to say, the difference between my mom and my mother-in-law is huge. I hate going to my mom's house for dinner, but my mother-in-law goes all out just for me. She tries her hardest to make the entire meal gluten free (she'll even make gf muffins instead of rolls) and if she doesn't make a gf side dish, she'll make a seperate side dish for me! I can't tell you the difference it makes to know that she cares and makes the effort and that no one in my husband's family complains about it. I really do feel normal at her dinner table. Sorry that was long, but I guess I really have to stress that she feel included in her family meals since she may not get it anywhere else.

As far as child support groups, go to gfutah.org and there is a link for Raising Our Celiac Kids. They have summer camps and activities for kids. There is also a Getting Started link that has steps for starting a gf diet. There is also information about monthly meetings held at St. Marks's hospital for the celiac support group - they are really great to go to. Anyway, I'm sorry this was so long - there is more to say but I don't want to bore you. If you have any questions or would like some recipes, you can call me at ###-###-#### or email me at [email protected]____.com. I am home every day with my son (and I do daycare) except Monday and Tuesday nights I am at school. If I don't hear from you, good luck and I hope your daughter gets feeling better soon!

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S.

answers from Denver on

Hi K.-
My mother-in-law was just diagnosed with celiac, and we are in the process of getting tested. I have a feeling my husband has it, and i'm hoping my daughter doesn't but i'd be interested to know what you've done so far to remove gluten from the household. Obviously if one person in the family has it, you have to make the whole house gluten -free soo... I think celiac support groups will be springing up as this disease gets more properly diagnosed. Check out the celiac foundation at celiac.org for more information...
good luck

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A.O.

answers from Salt Lake City on

I dont know of any support groups but I do know of some yummy treats and recipes for your child. She can still have Rice Crispy Treats, preferably homemade. You can use the Chocolate or original. A yogurt & fruit shake, you can add some Flax Meal for fiber, it's found in the refridgerated section of health food stores. when searching for recipes look for ones including Rice flour or Panko in them. If she can have eggs, sometimes those allergies go hand in hand, but if she can make Stuffed French Toast(stuff with cream cheese, jam, peanut butter, cinnamon roll filling, etc.) using either Rice bread or Tapioca bread. Make sure to add a little vanilla and cinnamon to help mask the flavor of the bread.
Also, Have her sit down with you and make a list together of all the foods she loves and can still eat and treats she know she can choose from when she is in the store. The more choices she has the easier of a time she will have. Good luck!

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M.K.

answers from Colorado Springs on

My children are gf/cf (they also can't have dairy) not because of Celiac but because of autism - they have an intolorance. The best advice I was given is to take her favorite foods and to substitute gf alternatives. If you go to whole foods they have a lot of gf items. I would look around and research what is and what isn't. It is hidden in almost everything. Manwich is gf, as well as beef stew, for cereal we eat enviokids brand. Huntz katchup is gf, as well as hellmans mayo. If she will eat fruits and vegtables then that is always a good snack. For bread they have frozen premade bread but it is gross. There are also mixes, some are really good. But it adds up fast so we eat a lot of corn tortillas. The white corn is my kids favorite. There is a book called special diets for special kids that has awsome recipies that are all gf/cf - mostly geared towards kids who are on the diet for other reasons but still good info. I am sure there are even more good books out there for spacific celiac. Also, we do bulk shopping on Amazon. It is a great place to get mixes as well as crakers, cookies ect. I know it seems insermountable at first but you do get used to it over time and I am sure she will feel tons better once you do. If you have any questions that I can help you with our any other input fill free to contact me.

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M.F.

answers from Salt Lake City on

I strongly recomend that you contact my friend Kimberly Wagstaff, RN, NAET Certified, Allergy/Pain Relief ####-###-#### or [email protected]____.com son has allergies that effect his skin and lung health. But he is being treated by her and now is no longer allergict to eggs. Soon he will be treated for peanut butter and animal dander. What your daughter has is the same as what my neice has and is being treated by Kim as well. Who is now able to eat regular bread.
I think it is worth a call. It is a matter of a few minutes on the phone, to find out information that could change your daughters life.

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P.H.

answers from Denver on

Hi K.,

Safeway has a few gluten-free items we've tried: pasta, cereal, cookies. They're in the healthy foods aisle. My kids will eat them, no problem.

Good luck and sorry to hear about your daughter!

P.

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H.

answers from Colorado Springs on

I have an adult friend in Denver with the same issue. I emailed her for advice to pass to you. Here is her response:

"There is a Celiac Support Group in Colorado with
coordinators in the major metro areas such as Denver
and the Springs: http://www.geocities.com/csadenver17/
Contact info is on the website too.
The best cookbook I own is: Gluten-Free Gourmet by
Bette Hagman. Her other cookbooks are great too. But
this one is my favorite.
There are several awesome websites with ideas for all
Celiacs and also kids:
www.celiac.com
http://www.celiac.org/kidskorner.php (They sponsor a
gluten-free (GF) camp for kids!)

If she lives in the Springs, there is an awesome
bakery called Outside the Breadbox:
http://www.outsidethebreadbox.com/
They make wonderful birthday cakes, graham crackers,
cookies and more.

Annie's has a whole line of pre-packaged foods just
for kids: http://www.annies.com/faqs/celiac_kids.htm
You can find Annie's online, at Vitamin Cottage, and
sometimes King Soopers or Safeway.

Also, Vitamin Cottage is a wonderful place to buy
ingredients and get advice. They also sell Ener-G
pizza crust that is to-die-for! It is really
expensive, but worth it. Besides, you can deduct the
expense of gluten-free foods on your taxes under the
medical section. I save my receipts and write what a
"regular" non-gluten-free item would cost on the back
of the receipt. For example, Whole Foods sells their
gluten-free sandwich bread in the frozen section
(hands down the best bread!) for $6/loaf. A regular
loaf of sandwich bread would be $1. So, you are able
to deduct $5 on your taxes. "

I hope this helps.
H.

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