Just Found Out I Have "Celiac"

Updated on December 13, 2008
C.M. asks from Spanish Fork, UT
19 answers

I just found out I have celiac and it feels a little overwhelming. I now have to completely change my eating habits and a lot of things are now off limits. I was wondering if any one else out there has it and/or knows of good resources to get myself educated on the topic and books of recipes that are gluten-free and just anything that would be helpful. I have 7 children and it is going to be challenging to try and create food for me that is seperate from the family so any tips along with the ideas would be great. Thanks!!!

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So What Happened?

Thanks so much for the responses. Lots of good advice and I wrote down every site mentioned and every book and resource. I think it will be okay as I learn how to eat and cook. The hardest part, I learned last night at my women's church activity, is to not be able to eat what everyone else is eating. Especially the desserts!!! I appreciate all the advice and I don't feel so alone and scared anymore. Thank you.

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C.S.

answers from Denver on

Thank you for posting this!!!

I just found out myself (the same afternoon this was posted) and I was devastated. My little brother has had this for years, and I always thought it was a fate worse than death, as much as I love my carbs! But, as important as it is, we're changing for the whole family. We're all going gluten-free! Thank you to everyone who added advice and suggestions. It's feeling a LOT less daunting with so many suggestions.

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M.A.

answers from Denver on

Hi! I've recently found a blog called $5 dinners - all about recipes and coupons and making food that is healthy & costs less. I *think* she's also dealing with Celiac because she often lists things as GF (gluten free). It's at http://www.5dollardinners.com/
Hope that gives you some food ideas!

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E.H.

answers from Provo on

My husband and daughter have gluten intolerance. It's amazing how many gluten free items there are out there. It's daunting at first, but it becomes second nature over time.

Here are some of my favorite websites with gluten free recipes and info:

http://www.celiac.org/
http://glutenfreegoddess.blogspot.com/
http://glutenfreegirl.blogspot.com/
http://bakingforjohn.blogspot.com/

Here are two recipes my family loves.

Chicken Stir-Fry with Orange Scented Rice (by Rachael Ray on the food network)

Rice
Make whatever kind you like. Grate the rind of two oranges into it while it cooks.

Stir Fry
2 tsp. oil
2 lb. chicken breast cut into bite-sized pieces
3 cloves garlic
1 onion
1 pepper
2 carrots
1 c. snow peas

Cook chicken, onions, and garlic in oil. Add carrots, then pepper, then snow peas. When all done, add sauce (below), and serve with rice. We make this with whatever veggies we have on hand. Frozen green beans work really well too.

Sauce
1/4 c. gluten free chunky peanut butter (we like Adam's brand, but others are gluten free too)
3 T. soy sauce (If you didn't already know, soy sauce has gluten. We buy it at our local health food store, but I'm learning there are other gluten free soy sauces out there)
3 T. honey
1 inch gingerroot, peeled and minced
1 clove garlic, minced
1/2 tsp. crushed red pepper flakes
Juice of half an orange

Heat all in saucepan over low heat until combined. Pour over stir-fry veggies.

Minestrone with Rice
1 T. olive oil
3 large stalks celery, thinly sliced
1 onion, finely chopped
3 carrots, finely chopped
2 cloves garlic, crushed
1 (28 ounce) can diced tomatoes
1 quart chicken broth (some chicken broth has gluten--check labels and go on-line if the labels don't tell you. Swansons natural goodness broth is gluten free, so I stock up whenever it goes on sale)
2/3 cup rice
salt and pepper to taste
1 (15 ounce) can white beans, drained
1/4 cup chopped fresh parsley

In a large pot over medium heat, cook celery (reserve the leaves), onion and carrot until vegetables are tender, 5 minutes. Stir in garlic and cook 1 minute more.
Stir in tomatoes, broth, rice, salt and pepper. Bring to a boil, then reduce heat, cover and simmer 20 minutes, or until vegetables are soft and rice is nearly tender.
Stir in beans and heat through. Stir in parsley. Enjoy.

Variation: add ham or chicken or bacon for more protein.

I hope you start to feel much better as you get used to eating gluten free. My husband and daughter sure did.

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K.G.

answers from Denver on

Hi C. -
While I do not have celiac disease - I do have MS and up until October of this year have been struggling -fatigued, achy,no energy, in pain and miserable.
In October, my husband and I went to a great seminar in Boulder put on by the Northern CO MS society - the speaker was Dr. Loren Cordain, Ph.D. Professor of Diet and Nutrition at CSU. He has been developing and studying the effects of dairy and grains (processed) on various illnesses - and wow was it an eye-opener for me and my husband. With respect to me and my MS - I started the program the next day - I have lost 13 lbs in 45 days and FEEL GREAT. Specifically I have cut all grains (other than quinoa - a good source of protein and super for breakfast with fresh fruit -it is an ancient unprocessed grain -something to check out maybe?), all dairy, all processed meats (bacon, sausage, processed meats, and specific to MS issues - tomato products, peanut products and beans (kidney, etc). My husband has lost 15 lbs. We have a 3.5 yr old daughter and she is not limited by this but she loves the food we fix - lots of fish, lean meats, fresh veggies, salads, seeds, nuts, fruits. We are eating healthier and have no angst about the decision. As my husband said "my wife is back!" Praise Be. We have hope in our house again - ironic to think it has to do with food.
The website for Dr. Cordain's study is www.thepaleodiet.com -and while I don't know much about the specifics of Celiac disease - one of my co-workers MUST eat gluten free - she has really been excited to see my health improve and has found the basics of this study helpful to her too.
Your kids will adapt as they see you feeling better. Best of luck.

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M.S.

answers from Denver on

my first thought is, everyone gets to change their eating habits! other than loafs of bread, there's no reason for your family to eat something different from you. there's a couple good websites out there that my mom uses - do some searches and see what comes up. focus on brown rice, rice noodles, and potatoes (w/skins for the vitamins and fiber) for carbs. and start eating more fresh fruits and veggies. its only when I happen to be craving pasta and my mom's coming for dinner that I have any issues cooking for her. you might be able to tolerate some corn which can be very helpful. also watch out for xanthum gum (I know a number of celiacs that it rips apart their stomachs). check your local grocery store. the kroger chain does a fantastic job in the denver area stocking and identifying gluten free products.

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M.S.

answers from Denver on

Check out your local bookstore. There are lots of great gulten-free cookbooks available these days. Also, if you have the whole family switch to the new diet, everyone will feel much better; more energy, weight loss (if needed), and general good health. Kids are pretty adaptable, so once you get over the initial "bump in the road" you'll probably find that your kids will do very well with the new diet. Actually, with the quality of gluten-free foods now, they might not even realize that some of their foods don't have it anymore. I hope this helps and the best of luck to you!!

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J.L.

answers from Provo on

I have it and my sisters, too. I actually keep all my 3 kids off of dairy and wheat. the first year is hard, the second is much easier, but here are the best things. For recipes from scratch that taste delicious go to eatingglutenfree.com The ingredients are a little pricey, but when you want to splurge its the best.

At a health food store, such as good earth, they have a whole gluten free section. some things are gritty and grainy. The very best things are Kinnikinnik brand mixes: pancakes, bread mix and cake mixes are delicious! Then Tinkyada rice noodles are really good, you can't even real tell the difference. I use Pamela's bites for chocolate chip and chocolate cookies for me and my kids (when they're on sale) and Mi-Del Arrowroot cookies for my kids. Glutino pretzels are very good, too, especially the sticks. It's expensive, but you can find most of these on Amazon and save almost a dollar per item and have it in bulk.

Kinnikinnik also has some items in the frozen section, they are okay if you need something quick, but I prefer the mixes.

Good Luck! Feel free to email me if you have any questions.

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A.C.

answers from Colorado Springs on

I eat gluten free - have not been completely diagnosed, but had positive blood tests (the scope was negative). Anyway, celiac.com was a valuable resource to me. Also, Gluten Free for dummies - the book, was very very helpful. It puts things in easy terms and gives some helpful info about eating out and cleaning out your kitchen etc. It is infinitely manageable to eat this way as soon as you get into it. Most of the "natural" grocery stores (and even some of the mainstream ones) have tags on the shelves to indicate gluten free and I know whole foods has a shopping list that can be acquired at the customer desk.
Products that I find very good: Vans gluten free waffles, Tinkyada pastas, bob's gluten free bread mixes (esp. cinnamon raisin), Namaste gluten free mixes (they have cakes and brownies - really yummy).
If you have other questions or want other suggestions as to foods, please feel free to email me at ____@____.com. I've been gf for about 2 years now and it is definitely working for me.

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H.F.

answers from Salt Lake City on

Hello C.,

I was diagnose w/ Celiac 7 weeks ago so I can totally relate w/ what you are going through. I went to a Dietician and she gave me some helpful information, but a lot of it I had already found on the internet. She did suggest that I go to the Library and check out some books to see which ones I like before purchasing them. I found one I really liked, it's called: "The Gluten-Free Gourmet Cooks Fast and Healthy" By Bette Hagman" I like her book because it explains the different flours and how to use them and also she gives time saving tips. Another book that is highly recommended by my dietician and everyone else I have spoken to is, "The Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case." I am not sure where you live, but there is a store called "Against the Grain" in Taylorsville and they only sell Gluten Free products. Also, if you need to buy items in bulk, you can order items from "Blue Chip Baker" and they too are located in Murray, Utah. There is also a support group that meets on the 2nd Tuesday of every month at St. Mark's Hospital. If you would like to email me, I can tell you what I have done so far. It is ____@____.com in there. There are others out there who know what you are going through. H.

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L.M.

answers from Colorado Springs on

Oh,I feel for you! It is overwhelming at first, but reassured that it will get better as you have things in place- and you'll feel better! I recommend Living Gluten-Free for Dummies by Danna Korn. It covers EVERYTHING you need to know- and all in an upbeat way- and it has recipes. I like the cookbook Gluten-Free Quick and Easy by Carol Fenster. The library has a lot of GF cookbooks- I checked them out and then bought the ones I liked. A few food hints-Delimex chicken or beef taquitos (available at Wal-Mart) one of the few frozen foods available in a regular store that is GF. Also Rice Chex are now GF. There is a new pizza place in Colorado Springs called Pizza Time that has GF pizza. And, I know you don't want to hear this- but please have your kids tested also. Good luck to you!

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J.T.

answers from Denver on

Vitamin Cottage will be a great resource for you. They have a lot of reference material, books, magazines, seminars (some free) that will help with your transition. They also very clearly mark all of there Wheat Free/Glutin Free items so they are easy to find. A few of the employee's also have Celiac and can make excelent recomedations.

Good Luck,

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K.D.

answers from Denver on

My 3 yr old daughter was diagnosed with Celiac 7 months ago. It was a huge learning curve but now it's really not so bad. My favorite cookbook is "Wheat-Free, Gluten free Cookbook for Kids and Busy Adults by Sarros. I also have many of the Bette Hagman books.

Outside of the Breadbox found online and at Vitamin Cottage has the BEST breads, rolls, hamburger/hotdog buns, etc, that we have found. We like these alot better than Deby's GF stuff. The texture is more like the normal wheat breads and doesn't crumble.

Amy's Brand has lots of gluten free entrees that are very tasty, expecially the pizza, mac and cheese and Mexican bowls.

Many King Soopers now have a gluten free freezer section where we can get donuts, frozen cookie mix, and a wide variety of other things.

Pamela's brand is great for pancakes mixes, cookie, brownie, cake mixes as well.

Whole Foods, King Soopers, Vitamin Cottage, Sprouts, and The Sunflower Market all have a great variety of GF foods.

Tinkyada is our favorite pasta brand.

And you'll find many of your every day foods are gluten free, like Chex Mix, Yoplait yogurt, pace salsa. Some companies will email or mail you a product list which has been very helpful.

There is a Denver chapter of the Celiac/Sprue Association that we joined. It's been great. They have monthly get togethers, this month is a Christmas cookie exchange. They also sell a book of gluten free food items. It's made things so easy, especially at Halloween. www.csaceliacs.org. They also have a dietician who has been helpful.

Hope this helps, feel free to contact me with any other further questions. It was very nice in the beginning having someone to help with the questions.

I will say that since gluten free items are so expensive we do pick and choose. Some things in the house are gluten free others aren't. We have shelves designated in the pantry for gluten free only, along with a gluten free only toaster. I've gotten pretty good at making mostly gluten free only dinners and lunches, but some things like pancakes, cereals, breads, mac and cheese. . I'll make a GF and a non GF version . .always being very careful not to contaminate. It was just easier on our budget this way.

Hope this helps! it is hard but we have been able to find many yummy substitutes for my daughter. I'm sure it's harder when you're older but the change in your health should be very noticable and make it worthwhile.
K.
K.

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J.B.

answers from Salt Lake City on

C., I feel your pain. I was diagnosed with celiac almost 4 years ago after having my first baby (who also has celiac). The best place to go for gluten free food is Against the Grain in Taylorsville (it's in the phone book). The people working there are very knowledgable (the owner, Diane, and her daughter have celiac as well). My advice to you is to NOT cook seperate dinners. There are tons of receipes online that naturally don't require gluten to be added (google gluten free receipes and you'll find so much you won't know where to start). The thing is, when you cook separate meals you run the risk of cross-contaminating your food with gluten from their food. Now that I've been on the diet for 4 years I have become extremely sensitive to it and get terribly sick if I ingest it. Stick to the basics like rice, potatoes, corn, beans, etc and add meat and veggies to it for a meal that everyone can eat. As for breakfast, since gluten free food is more expensive, cook your pancakes, etc either in separate pans or cook yours first then everyone elses. Some cereals you can eat that can be bought at regular grocery stores are Rice Chex, Cocoa Pebbles and Fruity Pebbles (Flintstones). There is also a website called bakeryonmain.com that sells gluten free granola cereal and granols bars; it's actually cheaper to buy it online than from Against the Grain. All of their six flavors are really good. The granola bars are ok. Anyway, for me luches and snacks are the hardest. There are two kinds of pretzels, a red or blue bag (Glutino) or an orange bag (Energy)...don't buy the orange bag, yuck! Charlotte's plain rice bread is good for pbj, but it might take awhile to like it, especially after eating wheat bread! Charlotte's orange/raisin bread is really good as french toast. The best sandwich bread I have found is Kinnikinick plain bagels. Toast them in a toaster oven till their soft then make meat sandwiches. (If you don't already have a toaster oven, you might want to get one for your foods; don't share the regular toaster since you use it for wheat bread.) Against the Grain has lots of foods and sauces to choose from; it's just trail and error with what you might like. Speaking of sauces, and also canned or boxed food, a lot of them have modified food starch; if mfs is corn based it's fine, if it's wheat based then no...you have to call the company to find out. (I know it's a huge pain.) I believe the Kroger brand at Smiths lists all their food with wheat if the mfs is wheat based. Needless to say, going out to eat is going to be a pain too. Some restaurants I know of that you can eat at are Z'Tejas, Biaggi's, Spaghetti Factory, Chili's, Asian Star, Outback Steakhouse (these all have gluten free menus). A place called Dragon Diner (13 E 39 S) has ham fried rice that doesn't have wheat in the sauce. French fries at McD's and Wendy's are ok (they aren't cooked in the same vat as their fried foods) and if you order a sandwich, of course no bun and nothing fried. The ranch dressing at both places are gf and the parfait at McD's is gf too. Go to gfutah.org and there's good info for the GIG (gluten intolerance group) in your area along with stores, articles, etc. I know this is an overwhelming diet and I still get frustrated (especially at social events where there is always food I can't eat) but in the long run, it's worth it to feel normal and healthy again. If you have any questions or need someone to vent to, I'm happy to help. You can email me at ____@____.com anytime. I'm the only one in my little world that has celiac, besides my son, so I feel "different" and "lonely" sometimes and would love a friend to talk to about it! Good luck and best wishes for you and your health. P.S. KEEP ALL YOUR RECEIPTS FOR GLUTEN FREE FOOD - IT IS TAX DEDUCTIBLE BECAUSE IT'S A MEDICAL EXPENSE!!!

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S.H.

answers from Denver on

My coworker has celiac, and has found that Vitamin Cottage is a great resource. Good luck!

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J.M.

answers from Denver on

HI! I have in-law family members that are gluten intolerant and some with celiac too. My sister in law was severely effected - she has bone and kidney problems now as a result but since she found out, she's been doing a lot better - she even runs marathons! So here are some things I copied from the BoulderRocknMoms Yahoo group...(Also, I found a bunch of yahoo groups that are about celiac and gluten free stuff also. Recipe exchanges etc. If you create a yahoo account you can join groups - search for celiac or gluten free and you'll see a bunch). THough I don't have symptoms, I'm going to get tested also, since I learned that it can effect people who don't even show the "signs". My question will soon be: When can I test our new baby??!!!

celiac.com

www.bouldercountyceliacs.org

German Bakery (I think it's in arvada) also does gluten free and dairy free items. One of the owners is Celiac.
http://www.rheinlanderbakery.com/

Pasta: Tinkyada brand-All
Bread: Kinnicknik (you'll still need to toast it)- Vitamin Cottage Or Whole Foods Bakery has some in their freezer
Pancakes/Waffles: Bob's Redmill-All
Flour mixes: Bob's Redmill-All
Cakes, Muffins, etc: Namaste- All (the chocolate cake is fabulous. I've put both cool whip or a cream cheese frosting on it)
Pizza crust: Nature's Best Brown Rice-All
Cereal: EnvironKids makes good cereal if you like them somewhat sweet. The Gorilla munch looks like Kix, tastes like Captain Crunch. The Koala Krisp is like chocolate rice crispies. The frosted flakes are, well, frosted flakes. (All)
Waffles: Any really, they are all about the same...I go with what's cheapest
Crackers: Blue Diamond Nut thins (all) or Mary's Gone Crackers- VC or WO These have little seeds in them that
Beer: Old Bard's Beer (I only know where to get this in Westminster...I'm sure it exists in Boulder too though), Red Bridge-Liquor Mart or the liquor store in the parking lot of VC and WF that faces 30th
Veggie burgers: Amy's has a new Bistro Burger that isn't bad. By far the best gluten free one I've had.

Beau Jo's has GF pizza and the Red Bridge beer. I believe Boulder is getting a Beau Jo's soon.

Other things...
Vitamin Cottage has some dehydrated soups made by Hearthland Foods, which is a company from Parker. The potato soup and the corn chowder are good. The wild rice/veggie one is yuck. I'm trying the potato one w/ some ham and kale I added tonight, in fact.

http://www.debysglutenfree.com/ I know they have a
distributer in Erie, which may be who Kim was referring to. Cupcakes
will run you ~$1.00 a piece, maybe less with a bulk discount.

:)
J.

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J.L.

answers from Denver on

First off Celiac is genetic so you may want to have your children tested. I will say gluten free stuff is so much more readily available now then it was a few years ago. Lots of regular grocery stores carry Gluten free products. One thing that has helped me is going to large food company web sites like Kraft and printing their list of gluten free products. Their are a lot out there. It will change the way you cook and eating out is very difficult, but with a little research it is possible. Their is even a company that publishes and sells a menu guide to eating out. A yahoo search should help you find it. It has popular restaurants and what from the menu is gluten free. Good luck.

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C.B.

answers from Denver on

You might find out if any of your kids have it too. It is a good chance that some of them do. I don't have any resources for you but I know a lot of mom on this site do. If you are in the Denver area, Vitamine Cottage has a lot of gutten free products and has a free Nutritionist on staff by appoinment only and can help you meal plan. They are a great place!
C. B

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H.W.

answers from Colorado Springs on

My son (3) has the disease. Meals are easy...add potatoes, cornbread (homemade) or extra veggies...it is healthier for the whole family, anyhow. It is snacking and eating out that is the hardest. There are great websites and our doctor (Yazdi in Colorado Springs) gave us tons of books and handouts.
Good luck.

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B.M.

answers from Pocatello on

Hey I also just found out that I have Celiac. My doctor gave me a list of foods that are gluten free. Try Celiac.com. That has helped me alot. When I fix Spegetti for the family I cook a baked potato for my self and use the sauce on it. It has been real hard because my family is big time pasta fans. There are pasta's out there that are gluten free but I just havnt been able to bring myself to buy any yet. Your doctor should have a support group or know of one around where you live to help. O Rice flour and potato flour is great. Hope everything goes good for you
Lots of love
B.

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