7Year Old Daughter with Celiac Disease

I have celiac disease, and it is hard, but I don't eat meat which makes it harder. Meat is safe, also ther are some good corn pastas at whole foods. I find I like tapioca bread, at deirbergs better than anything else I've tried. I also eat a lot of fruits and veggies. Any processed foods are liable to have some sort of wheat gluten in them. Stay away from caramel color, which is in a lot of things including brown sodas. Soy sauce has wheat gluten. I could really go on and on, if you want to email me with any questions feel free, it is very hard, I know. Good luck!

I can most likely put you in touch with a mom in Fairview Heights who has two kids with celiac and she has it herself as well. Contact me at ____@____.com.

I'm sorry you and your daughter have to deal with this disease. It is not fun, but you will eventually get it down to a science. Cooking in the home is full of challenges. The thing that was hard for me to get used to is that toast for your daughter will require a separate toaster and if you do any baking that is not a "legal" food for her, flour particles in the air can even cause a problem. I don't mean to be such a downer about this, but you just have to be very careful because even a very small amount of gluten can ruin her intestine. The good news is that in the ready made food at the store, there's more to choose from and everything (mostly) is labeled really well now. I would look for support groups online to help you with ideas for food for her. My 7 year old son had been diagnosed with this disease, but either he was divinely cured or it was a misdiagnosis because he is now living with no problems with celiac. I truly hope you're able to find help with this. I know it can be very trying at times. If you want to talk with me privately about this, I'll be glad to talk with you, just email me. Good luck.

L.

My mom has Celiac. There are a lot of gluten-free products out there... even in the local grocery stores. Dierberg's has a pretty good selection. A really good dessert is a flourless chocolate torte. It is a great substitute for cake. It is very rich. Trader Joe's has one that doesn't have flour, but be sure to read the label to make sure you get the right one. There are a lot of recipes out there, if you search on 'flourless chocolate torte recipe'. Hope this helps.

Hi Tanita,

I have a 6 yr old daughter who has been diagnosed with celiac disease when she was 19mths. Things to remember just because it say gluten free doesn't mean that it is wheat free. Since moving out here I have found lots of stuff at Hyvee. Also, you would think that organic food would be good for your child well that is not always the case. They put wheat in there. Rice, potato, and corn pasta is really good. Just some of the basics out there. Oscar Meyer hot dogs they can have, Chicken but with no breading. If you want to bread chicken for her use either corn flakes and just crush them up. They have a box of bread crumbs that are made from corn flakes but it has malt in it. I have this book and it was our bible in the beginning it gave us all the information on food they can eat and where to buy them. It also has fast food and resturants. It helps, here is the info.

Celiac Sprue Association PO Box 31700 Omaha NE 68131-0700 Tel ###-###-####
web site www.csaceliacs.org
email ____@____.com

Let me know if there is anything else you need to know. I know that you received alot of information on this but this really helped us out in the beginning. My daughter's dietician gave us this book as well. Good Luck

I do not have experience with this personally, but recently had a conversation with someone who was sharing the struggles of finding gluten free products. He said that there are a few restaurants who serve gluten free foods. I wish I knew who they were, but hopefully it helps to know that they are out there.

Quinoa, is an anchient grain the Aztecs used they called it the grain of the gods. Its great tasting and an excellent source of vaitamins and nutrients. Actually we all should be eating it. Otherwise here is the exact web address my cousin uses for helping with his Celiac disease. http://www.glutenfreemall.com Once you get the hang of the cooking its easy. And you don't really have to cook your family different foods. You can make your own pastas and such.
A. T

Tanita,
It may seem like this is the end of the world but it truely is just the beginning of a healthier life for your daughter. I was diagnosed with Celiac Sprue (disease) in 2001 and at the time we questioned whether or not my daughter also had it so I kept her gluten free until 2005 so I know that it is possible to work with the schools for safe meals and snacks as well as still enoying going to birthdays and other social activities. There is alot to learn with Celiac disease and some times it can feel overwhelming so get into a support group either in person or online to help get you through what can seem like an overload of information. In the Kansas City area there are 2 support groups: one that is north of the river in Gladstone and the other is south of the river at St. Joseph's hospital. This second group meets the 2nd Sunday of each month and also has a kids support group as well. Their website can give you more details: http://www.csakansascity.org/. There are also groups on Delphi forums and Yahoo that are great resources...even to someone that has a few years under her belt like me. Feel free to email me if you need more info or have specific questions.

I was diagnosed "borderline" Celiac a few years ago, so I've adjusted my diet to be as gluten-free as possible. Whole Foods/Wild Oats has a great selection of gluten-free products throughout their stores and they're boldly labeled, so they're easy to find. Some regular grocery stores also carry GF products (I know Cosentino's Market in Brookside does), so ask. If they don't have what you're looking for--ask them to stock it! Unless a product is labeled "Gluten Free," you have to SCOUR ingredients lists. Study up on all the "other" names of gluten-containing products.

My allergist, who diagnosed me, has great information. The office also puts in orders for GF products for you! They get a discount because they're ordering in bulk. The office is Allergy Link, and it's in OP. The doctor is Dr. Jeremy Baptist. Hope that helps.

I'm not dealing with this, but my grandmother has it and its very hereditary, so I try to limit my gluten intake. I shop at the Merc in Lawrence, and they sell all kinds of gluten free things, including cake mixes, cookies, tortillas, pastas, even oats. Its a little pricey, but at least you don't have to cut things out of your diet.

The good thing is: she was diagnosed, and you know what to do to manage this disease. Also, your whole family will benefit, as you will probably all go on a gluten free diet, and people on gluten-free diets have healthier guts. As it was explained to me: gluten is like "glue" and it sticks to the cilia in the intestines that take in nutrients from your food. If the cilia are all gummed up with this glue, they can't work as well as they should, and you aren't getting all the benefit of the nutrients in your foods.
The bad thing is: we live in a world that bases its diet on wheat! Gluten is even added to foods that you might not realize has it. Depending on how sensitive your daughter is, you may have to be grinding your own flours to make your own gluten-free breads, and reading labels to see if the manufacturing plant of a particular product even uses wheat in the plant.

There are some wonderful cookbooks for gluten-free diets--you've probably already found them. Freshly-ground flours make delicious gluten-free breads. Health food stores carry gluten-free alternatives to wheat foods. Whenever your daughter is going out with others and there will be food served, you'll need to be sure she has gluten-free alternatives so she won't be tempted to eat what the others are eating. At age 7 she is old enough to understand the importance of doing this.

I'm sure it will seem difficult at first adjusting to this different diet, but once you get used to it, you'll wonder why everyone else is gumming up their intestines on a daily basis!

Best wishes.
J.

there's a little store in webster groves that caters to this and other specialty diets, called 'the natural way.' you will find lots of info and alternative gluten free foods there.

We have also been dealing with this for a few months now in our 8 mo. old son. It is unbeleivable to me how many baby foods & snacks have gluten in them! We are now beginning to introduce some table foods & I, like you, had NO idea what to look for to safely feed my child. It's a horrible feeling! I thought feeding our kids should be one of the few things we don't have to stress over & it should be a very natural, enjoyable thing! Anyway, I recently got the book "Living Gluten Free for Dummies" & it is wonderful!!! I really recommend it to you. It's really helped me know what he can & can't have in plain, simple, easy to understand terms. And also taught me that this really isn't such a bad thing! Check it out & i know you'll feel better.

Hi... My husband has celiac sprue. By the time he was diagnosed it was very advanced. Normally he would weigh 170lb. He was down to 120lb. He was put on a gluten free diet at that time. He followed that diet for a long time, and gained all his weight back. He is 70 yrs old now. I don't know how far advanced your daughter is in this disease. John does eat a sandwich now and then or noodles, and doesnt seem to have any ill effects. He just cant have a steady diet of all the wheat products. We were told by the dietician that to read labels.. monsodium glutamate is in an awful lot of food, soups, etc.
Yes, the careful diet would be a life long process. They say it hits the smallest in the family. That would prove to be true, I guess, since his niece was diagnosed with celiac sprue about 3 months ago. It is also inherited, they tell me.
If you would research on the net, there are a number of companies that provide foods that you can order.. I did that for quite a while. I dont have the info any more though. Your local grocery should also have a lot of gluten free products now that weren't available when John was so bad off. I hope that this will give you just a little confidence and support.

Hi Tanita,

a lot of health food stores have sections that are gluten free. Someone who works there would be able to help you find a good variety of foods you need. I'm not sure if there is a health food store in your area, but HyVee (there is one in Columbia, Jeff City I think, and at the Lake) has a pretty good health food section and they have a lot of gluten free foods.

A book called "If It's Not Food, Don't Eat It," by Kelly Hayford, C.N.C. has some gluten free recipes and tips. It is also just a good book to read about nutrition anyway.

Best Wishes!

Hello! I work as an information, resource and outreach specialist for the Missouri Developmental Disability Resource Center. You may want to go to a website www.EFECT.org and look into getting on their listserv as a parent of achild with a disability. I know that the group is planning to put together a local cookbook that is full of the recipes that parents who have their children on a variety of diets (including GF, CF, GF/CF, dye free, etc.)I know there are lots of Moms on that group that do many CF meals--the great thing is that it will be a KC area cookbook, and so some of the food sources should be local--might be of help to you and your family. I hope this information is helpful for you

Hi Tanita,

My Uncle was on a gluten free diet and my Sister In Law is also. My Aunt always said she just had to fix stuff mostly from scratch because you never knew what was in anything canned, but I've noticed a lot of things now say "Gluten Free" right on the can. My Sister In Law eats a lot of meat and potatoes, not instant potatoes, real potatoes. I don't actually have a clue what Gluten is my Aunt tried to explain it once but I think I was to young or just didn't get it. I would think also your insurance should pay for you to speak with a nutritionist regarding this, as it is a major lifestyle change. Hope this helps!
M.

My sister just got diagnosed with Celiac's. Although I don't know a lot about it, someone from my church gave me these links. Hope it will help. Good luck.

http://www.celiac.org/

http://www.csaceliacs.org/

http://www.glutenfreemall.com/catalog/

http://www.glutenfreediet.ca/

http://www.celiaccentral.org/

http://www.pamelasproducts.com/index.html

http://www.clanthompson.com/index.php3

http://www.ceceliasmarketplace.com/index.html

A good friend of mine just had her 3-yr-old son diagnosed with it. She has a separate toaster, special pots and stoneware just for cooking his food, and even knows all the restaurants that either have gluten-free foods on their menu, or will prepare something special for him. I know she hits the health food stores and Trader Joe's for gluten free, and I will ask her for good web sites and send them on to you.

J.
EDIT:
I just got this in an email from Taste Of Home, and it looks like a good site!

http://community.tasteofhome.com/groups/Group.aspx?GroupI...

Hi,
I have some family members with celiac and if you are in the Missouri area, you may want to check out www.bscsg.org (bi-state celiac support group) I think they offer a "welcome" packet with a lot of information in it. Also, there is a place in Chesterfield Valley I think it is called Andrea's and they sell tons of awesome GF stuff (pizza, birthday cakes, breads etc.)
Good luck!

There are so many new gluten-free products available now that it won't be nearly as difficult as it used to be. Our local health food stores (Whole Foods, Wild Oats, Trader Joes) even have a section dedicated to gluten-free diets. She will have to make sure she takes her lunch to school though...so many products I didn't think involved wheat actually have wheat gluten in them...I mean I was really surprised. Also, check the internet for new info and tons of recipes. Google "gluten-free" or "celiac" or go to allrecipes.com and put gluten-free in the section provided. Thank God you had her diagnosed early in life; some folks like me don't find out until they're grown.

My daughter is 3 and is on a gluten-free diet- There are a lot of good resources online and if you call the food companies' help lines, a lot of them can give you a list of Gluten-free foods! Push fruits and vegetables- they are all gluten-free as well as brown and white rice, rice cereal, and rice bread- There is a great Gluten free section at our local Hy-vee as well! H. this helps!

What a voyage you are about to undertake! Our 12 yo son has been GFCF (gluten free casein free) for over a year and we have seen astounding results. I have had fun learning to cook EVERYthing gluten free. One of the best books I started with was Special Diets for Special Kids by Lisa Lewis. I have also used the Bette Hagman books - great for breadmaking. There are yahoo groups that have an amazing amount of information and support - GFCF Kids, GFCF Recipes and Silly Yaks come to mind. Even if you are not as restricted as we are on diet (we are VERY restricted) due to autism, the recipes are wonderful. I would just sift away the information that does not pertain to your situation. Gluten free is actually very healthy! I have been looking toward perhaps starting a support groups here like in Arkansas (ROCK - Raising Our Celiac Kids). Good luck and have FUN!

M. in Anderson, MO

My daughter is 7 years of age is gluten intollerant and is type I diabetic. We had her diagnosed with Celiacs back when she was 18 months of age. Then was diagnosed at 4 1/2 years with type I.

Depending on where you live there are many health food stores that offer gluten free foods. I can also tell you if you go to www.kinnikinnick.com, www.glutenfree.com, www.causeyourespecial.com. I buy pancake mix from kinnikinnick.com it is wonderful. Glutino crackers, and pretzels ice cream cones from glutenfree.com also the best muffin mix and sugar cookie mix I have come across is from cause youre special.
I do have a guide for gluten free diet for shopping, restuarants if you would like. You can e-mail me at ____@____.com and then I can send an attachment for you to print off.
It is a big adjustment but if you give the diet you will see results in a happier child. Our daughter gained 4#'s and grew 4 inches in 6 months being on just the gluten free diet.

Hi there! I do not have a child with celiac's, but I've known a handful of friends with children who have it. Up until about 5 or 6 years ago, it was almost uncommon to hear about it, but it is so much more common to know someone who has it now, so don't stress out. :-) My friend used to have to special order all her food on the internet, but nowadays, you can walk into just about any supermarket and find an entire section dedicated to gluten free products (Price Chopper, Hy-Vee, etc.). It has gotten much easier for families. Kids adapt so incredibly well too. My friends daughter was only 3 years old, but she was very aware of everything she could and could not have and I never saw her complain a single time. Seriously, that is the truth! I'm sure it will be an adjustment but hang in there, it is very common anymore and you can even find gluten free items on restaurant menus these days! Best of luck!

I don't know if Celiac's is what my grandfather would be diagnosed with, but he can't have any gluten in his diet. No MSG, no wheat flour, and he was informed by his doctor in the last year that dairy products have gluten. That means, for him, very little milk, yogurt, sour cream, or anything else dairy.
I was in charge of finding a dessert he could have for our Easter dinner, and www.allrecipes.com has a fantastic search option that gives you wheat gluten free recipes. I will warn you that some of them had dairy in them, so read the recipe carefully.

I have a 5 year old that was unofficially diagnosed a week ago. We have an appointment with a specialist at the end of the month to test her again. It is soo scary. There is sooo much to learn and do since she's in school. I have been getting a lot of advice from a lot of people. Luckily I have found a few places to shop.

What were your daughter's symptoms? How is she doing now? Some of the food is terrible. We have found a few things that are pretty good. Where do you live? I can tell you what we have found and where. Good Luck with everything. It's nice to know that there are other people out there who can understand what this is like.