Celiac Disease

Updated on September 28, 2009
S.D. asks from Hanover, MA
23 answers

I have a 3 year old daughter who has Celiac Disease and was wondering if amy other moms are out there with a young child with Celiac. Looking for new recipes and idea's.

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So What Happened?

I just want to say a BIG THANKS for all the great information! It will take me awhile to go check out all the websites!!! My daughter has been on a gluten free diet for 2 years now and its nice to be able to have new information and new ways to cook new foods! THANKS AGAIN!!! I REALLY appriciate it!

More Answers

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J.G.

answers from Boston on

you can try www.gfcfdiet.com
Their is a wealth of info on that site and tons of people to guide you through it. There is a good health store in Quincy and in Hanover and those people are soooooooo helpful to you on thses issues. I found bread that is awesome........Breads by Anna.....she also has a website with a phone number and she answers her phone and is so helpful to you also. The bread you can cut, it doesn't crumble, it freezes great and the best thing, it is a good tasting bread. Whole foods and Trader Joes are other good stores. Trader Joes has gluten free frozen pancakes and waffles that are yummy. They taste just like the regular ones. I hope this helps you.

J.

2 moms found this helpful
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C.M.

answers from Boston on

My husband has celiac and has since he was probably thirteen (though not diagnosed until later) so our whole house is gluten free.
We use regular cookbooks but substitute Bob's Red Mill Gluten free flour and use gluten free (usually rice) pasta. We like Tankeda brand of all the ones we have tried.
Also there is a great line of baking mixes called "Really Great Food Company." Their pancakes and pizza crusts taste great and my kids eat them no problem.

1 mom found this helpful

W.G.

answers from Hartford on

Hi S.,

I have a son who does not do well with wheat, among other things. He has been eating quinoa for over a year now and seems to do very well with it. Have you tried it? We just stick to the basics, mainly fruit (grapefruit, papaya) for breakfast, quinoa, cooked artichokes, red peppers, grape tomatoes, cucumbers, etc. He is growing well and smart as a whip. But I have to say the first 2 years of his life was very, very rough with head to toe eczema and many, many allergies. He received lots of cranial sacral work and still does about once a month and I found it to work wonders.

Our experience has brought us as a family closer to God, more in tune with living in the moment, keeping things simple and I see it as a real blessing. I think all these rough patches in life provide us as humans ways to grow more spiritually and I know this experience did just that.

Good luck in finding more recipes. A site you might want to take a look at is www.goneraw.com
Many people eat a mostly raw diet but many are eating a combination of raw, vegetarian, and some cooked food. I just find it helpful with good ideas, new ideas and a different persceptive on the many options we have with food.
cajcookie

1 mom found this helpful
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C.S.

answers from Boston on

I have a four and a half year old daughter with celiac disease. She was diagnosed just before her second birthday. I can't say I am an expert, but I'd be happy to talk with you. My email is ____@____.com, are you a member of the Children's Hospital Support Group? Their newsletter is sometimes helpful.

1 mom found this helpful
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K.O.

answers from Boston on
1 mom found this helpful
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K.V.

answers from Boston on

I know one adult with this and it is a challenge trying to come up with food options. I am sure that you about this website, but in case you haven't seen it, it looks good.
http://www.celiac.com/

1 mom found this helpful
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J.D.

answers from Boston on

S.,

I'm sorry to hear about your daughter. I know how hard it is to avoid wheat, it's in everything. I actually think that my 4 year old son may have a wheat allergy. I was just curious to find out what your daughters symptoms were and how it was diagnosed. I would appreciate any information. Thanks so much.

Jen

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C.T.

answers from Bangor on

There are some great cook books you can find at bookstores/libraries that have gluten free cooking receipes.

My nephew is on this diet as well due to his mother feeling it would help with his aspergers syndrome, and he has difficulty 'being different' from his friends at school (he's 9). Your daughter is young enough to be taught to embrace the difference, and to eat for her health. Thats fantastic you caught it this early (I commend you)!

I tried this diet for my son and had to buy through a Co-op, because there were no local places that sold the Xanthum gum or the flours needed to make the breads. And yes, I made the breads instead of bought them because it was less expensive. I never found anything palatable (sorry). Great alternative to sandwhiches with bread is using a corn torilla, or a piece of romaine lettuce.

Using rice flour makes things a bit grainy - I'd suggest spending more on the other flours... It makes things taste better. I've used the other flours to make gravies -- gives it a great nutty flavor.

Also, if you do a 'meat, potato, veggie' kind of meal, there is no gluten to worry about (unless you want to bread your meat, and then you can use cornflakes - which give it a great crunchiness!)

Be inventive and you can find a way around (almost) everything :D Good luck to you!

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L.D.

answers from Hartford on

Hi S.,
My son who is 9 now, was diagnosed with Celiac 5 yrs ago. I have tried many recipes and foods for him since then. I have had the best success using Bob's Red Mill GF flour mix when substituting flour in any recipe and always add in xanthum gum. The bread mix is also really good, we like it better than Gluten Free Pantry's mix. BRM pancake mix also makes tastier pancakes than the 'Krustez' I make for the rest of the family.

The best frozen waffles are by Lifestream- wild berry buckwheat are really good. We also get Wellshire Farms dino shaped chicken nuggets- my son loves those. I have started just buying them directly off their website, even with shipping it's still cheaper than local.

I've had the best luck with the Tinkyada brand pastas and they come in alot of shapes, even lazagna.

The BEST cookies ( besides home baked) are from Mr. Nicks. I get those at my health food store but can also order online. Not cheap, but excellent if you need good cookies and don't have time to bake.

Most of the above I can get at Stop n Shop and other regular grocery stores. When I get stuck I can always shop online and get what I need.

Feel free to contact me if you need specific ideas..... i have many!

L.

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M.D.

answers from Burlington on

We are completely off all grains along with other groups. It upsets the western medical establishment, but I say to our pediatrician, Eskimos lived healthily without these foods before Europeans introduced them to them. It's a good idea to become familiar with foods, what nutrients they provide, and what nutrients you need to be healthy.
I did a nutrient comparison for our pediatrician between wheat and nuts and seeds. Nuts and seeds are mostly more healthy than wheat plus they have more fiber.
Here's resources to help you with that:

http://www.nal.usda.gov/fnic/foodcomp/search/
http://www.nal.usda.gov/fnic/foodcomp/Data/SR13/sr13.html
http://www.ars.usda.gov/main/site_main.htm?modecode=12354500
http://fnic.nal.usda.gov/nal_display/index.php?info_cente...

Whatever your choices are, here are some resources to help you with your non-gluten diet (a chef told me that potatoes have gluten too, it's just a different form than that in grains). There are a lot of recipes to choose from.:

http://www.paleofood.com/
http://thepaleodiet.com/
http://paleodiet.com/

I use flax seed instead of grains which I grind myself with a coffee grinder. I could buy it ground already but this is less expensive and it loses nutritional value when it sits after being ground. We don't eat a lot of baked things anyway. The carrot cake on the paleofood recipe page is delicious and is like a "regular" cake except that it uses almond meal.

You'll get the swing of things when you find what your child likes and tolerates.

Good luck!

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T.C.

answers from Boston on

S.,

Would you mind contacting me?
My son is going through some testing to see if he has this or something else. How did you find out she had this? What was happening to her?

Thanks, T. C

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✿.K.

answers from Boston on

I'm sorry but I feel like I must correct you. My son has Celiac Disease and it is definately not the same as an allergy! An allergy causes your body to make hystamines Celiac disease is auto immune disorder that destroys the small intestine if left untreated with the correct diet. An allergy to wheat, barley, rye, oats, etc can be out grown but Celiac disease is life long.

M.L.

answers from Hartford on

One of my friends daughter has this! Contact me and I will get you in touch with her!
M.
____@____.com

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J.B.

answers from Boston on

Hi S.! I myself have gluten intolerance, and I suspect my children do as well (because it gets passed on through genetic markers - and they have many symptoms), so I have been busy finding all I can about what foods to eat and where to go for ingredients. Do you like to cook? If so, there are some really great cookbooks such as Gluten Free for Dummies. I know...I hate the name, but the recipes are terrific - especially the one for pizza! My kids can't tell the difference. Another good book is Allergy Free Cookbook by Alice Sherwood. i like this one as it gives options for dairy free, egg free, etc as many people may have more than one allergy with the gluten sensitivity. One thing I found is shopping in Asian markets keeps me farther away from gluten. i have to be more careful with additives, so reading labels is a must. But I have found more variety of noodles and vegetables and some frozen goodies by going to the Super 88 in Allston or the Asian market in Waltham. I have also learned that Tantawan (Thai restaurant in Watertown) can cater to your daughter's gluten intolerance if you tell them you need 'Nancy's menu'. This tells them you cannot have any gluten products in the meal. The food is great, and you can sit back knowing that she is safe and well fed! One last thing is I took several Asian cookbooks out of the library to learn different recipes so I could get away from trying to make every meal the gluten-free copycat of typical meals (some just won't cut it!) and I have been able to make amazing food that I thought I had to go to a restaurant for.
Good luck - this is tough, I know very well. More stores are offering gluten-free mixes, such as Pamela's (great chocolate chunk cookies), so the word must be getting out there!

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A.K.

answers from Burlington on

My children and I do not have Celiac disease however both have had digestive problems and our dietician for each ordered me to go on an elimination diet while breastfeeding to try to see if they were allergic to gluten, or bovine proteins. I wrote a few recipes that once I finish moving I can email to you (not sure where they are right now). It was so hard to find foods to eat! Pretty much I got very creative with potatoes and rice. I added various vegetables or non bovine meats (you could use any of the meats you like since your daughter isn't bovine restricted). If she has no trouble with soy then you should be able to add a wide variety of sauces to your dishes to add some flavor.

There is also a great website where you can get foods your daughter will most likely want to try.

http://www.enjoylifefoods.com/

These foods can be found in many grocery stores. A friend of mine eats them because she is gluten intollerant. She said they taste great but are a bit on the expensive side.

You can email me at ____@____.com ... once I have unpacked I can email the recipes I came up with to you.

Hope that helps!
A.

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S.A.

answers from Portland on

hi S. my name is S. and i have a very good friend that is quite older but she also has celiac disease and you were asking about new ideas for your daughter well my friend has found a line of healthy shakes and multivitamins that she can safley take and i wanted to let you know they also have a kids line of shakes that is really healthy and glutin free if you would like more info you can e mail me at ____@____.com

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S.L.

answers from Boston on

Hi S.,

My husband was diagnosed with CD April '07. I have tried many products, trying the find the best things! I first went through my products and started calling companies to see if products were GF(they'll send you coupons too) While there is still no FDA standard, most companies will boldly list common allergens and include in parenthesis any allergen after a listing of say "artificial flavors, starch".
Have so much to share, I'll just start to list...

Beth's All Purpose Baking Flour (Gluten Free Pantry, lots of great stuff, she's a pastry chef)--replace in your favorite recipes, I'm telling you it's great! Unsalted butter with GF flour works best in recipes...it looks and smells a lot like regular flour, Bob's Red Mill flour has a distinct scent we didn't find appealing! GFP sandwich mix, check out bread line Kinnickinnick (a lot of people like it, the doughnuts are pretty good)

Emeril's chicken stock (I make a lot soups, use it for flavoring for veggies too) he's got a quick recipe for chicken soup (I throw in chicken too) on the box (some have soup, some have risotto recipes just check).

Amy's Tomato Soup, Health Valley Cream of mushroom/celery to replace good ole Campbell's for various recipes!
Cherrybrook Kitchens (sugar cookie mix great, have cakes, frostings, other cookies)

Snacks, Pirates Booty, JAX, Fruity Pebbles cereal is GF

Bob's Red Mill- Mighty Tasty Cereal (to replace oatmeal, add a little sugar, husband loves it! Brownie mix (awesome! especially with the fudge topping listed on the package)

Maple Grove Farms and/or Kinnickinnick Pancake mixes are the best to us

Gorilla Munch cereal

Lifestream Waffles (blueberry buckwheat)

Nestle choc morsels are GF and they have GF recipes, use 100% vanilla extract, it's naturally GF

Land O Lakes also has GF recipes.....so much more......

How's this for a start? My husband has gained 30 lbs. He is 6'1" and got down to 130lbs. He is feeling wonderfully now. Good luck with your daughter, it really gets better as you get used to it. We'll be watching our 3 children (5,3,21 months)closely. Hope this is helpful! Please let me know if I can help more. Check out glutenfreepantry.com for on-line shopping....good luck! S. L.

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L.B.

answers from Providence on

My mother-in-law is a celiac & when she comes to visit I hit the organic section at Shaw's. They have a large selection of gluten free products. Also, I would imagine an on-line search for gluten free recepies would turn up a lot. Good luck!

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D.L.

answers from Boston on

There is a yahoo group called foodlab - http://health.groups.yahoo.com/group/foodlab/ is a group of moms with kids that have allergies and food-related issues including celiac disease. Very smart, knowledgeable bunch.

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B.S.

answers from Boston on

Hi S.! I have a coworker who has found wonderful support at Trader Joe's for ensuring that a student with celiac is not isolated during classroom parties...not sure if you have one near you. They have yummy gluten-free products! I hope this helps!

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R.R.

answers from Boston on

I have a gluten sensitivity, and it is a challenge. You have to be an avid label reader. I have been surprised so often by foods that do and do not contain gluten! For example, soy sauce! There are lots of substitute products on the market, but a lot of them taste really bad! If you shope at Whole Foods or any more upscale market you can usually find a section of Gluten free products...but don't limit yourself to just that. Also, Trader Joes has lots of items. If you want me to compile a list of foods I have enjoyed, let me know and I can do that for you. Let me know what substitute products you are looking for and I will look thru my shelves for the items and where to get them. Also, there are several good gluten free cook books on the market as well. I haven't purchased any, but maybe there are some kid-friendly ones out there. R.

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C.R.

answers from Boston on

S.,
I've been dealing with Gluten related eczema for years, and now my boys have it too. I never knew it had a name, or a foundation, or anything until I read your request. Thank You. I'm a huge fan of quinoa. I can find it at the Portsmouth Healthfood store in Portsmouth, NH but it's a lot cheaper when my mom picks it up at Trader Joe's. Also, the Allergy Food Cookbook recommended above is great for learning about substitution and meal creation. It's where I started, for learning how to cook foods I had never heard of before. My sister found that breaking an egg into hot rice, then stirring in whatever "omlett" ingredients you like worked great for an interesting/new breakfast idea. I like quinoa with peanut putter.
The biggest challanges I have found are school birthdays and eating breakfast at a restaurant. We're also allergic to eggs, so there's really nothing at a breakfast joint that is worth going out for. My mom always put together a fruit tray for school birthdays. The teachers appreciated it too. :)
-C.

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J.W.

answers from Boston on

check out the cookbook called balancing the bowl. their website has recipes and is all about people with food allergies - it's not specific to celiac - but very helpful!!

also - have you heard of wildtree. it is a company started by a single mom whose family had severe allergies (among other things like adhd, juvenile diabetes) and she couldn't feed her family 'regular' food - so she started making her own. check out www.jenwarr.mywildtree.com for more info or contact me.

hope this helps!
J.

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