Newly Diag.

[Guest AmandasMommy]

well 2 weeks ago my little 2 year old was diag. with celiac disease. my husband and i (37) oldest daughter (10) and son (5) have to go on the diet too. it is just sooo hard to do. i have no idea how to read the labels. the only thing i do is basic meats, fruits and veggies. then i hear that she cant have corn. what is a mom to do??? is this a life threatening decease. can she die from this? how do i find out what she can or cant eat? how do i find a support group around here. ive looked. is this disease rare? how can i afford this. normal bread is .99 cents, her bread for less than half the size is $5. i cant afford to feed my family. please help.

[KaitiUSA]

About 1 in 133 people have this disease but alot of people are undiagnosed. There are over 2 million people in the US alone who have it but are undiagnosed or with a silent case.

The body attacks the gluten and the villi in the small intestines that start to absorb the gluten. If this goes untreated then chances of cancer goes up 40-100 times, chances of osteoporosis, diabetes, liver/gallbladder/kidney/pancreas problems, and other problems can arise. They say you lose years off of your life by ignoring the diet.

You do not have to spend alot to be gluten free. Go for foods like fruits and veggies and plain rice(if you want seasoned get a spice that is gluten free to add) and things like this.

These brands below will not hide anything on their labels....they will clearly list wheat,rye, barley, oats right on the label or they are safe.

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

If you go to the Utz website they have alot of gluten free chips

Frito Lay and Conagra also have gluten free products

https://www.celiac.com/st_main.html?p_catid=12

You need to check out this link to safe and forbidden foods which will help with what you need to look for ingredient wise.

You need to throw out the toaster and get a new one, clean pots and pans, throw everything with gluten out if you all are going gluten free. You need to check toothpastes...colgate and crest and aquafresh are gluten free. You should check shampoos, lotions, cosmetics(especially lipsticks) to ensure there is no way anything can get into her mouth.

Your whole family needs to be tested for it because this is a genetic autoimmune disorder.

I hope this helps and if you need more info just let me know...hang in there it is easier then it seems at first.

There are some really good gluten free pizzas, mac and cheese, breads, donuts, muffins, and so forth but it's a matter of finding them and of budget because those things are more expensive.

She can have corn too unless she has a separate intolerance to that but celiacs can have corn

[tarnalberry]

Going gluten-free needn't be intensely challenging nor expensive, depending on how you do it. But it is a major change, and it takes some time, patience, and a lot of practice, to get used to it. Take a deep breath and realize that this is a big change, but there are a lot of people here to help, and you can do this with some practice. A couple suggestions:

• Make use of Kaiti's list for mainstream, packaged products that are made without gluten containing ingredients. You still have to read the label, but it will be an easier label to read.
  
• Make use of the Safe List, the Unsafe List, and the Additional Items to Be Aware Of List on the Open Original Shared Link main page. Print them out and take them shopping with you to make reading the labels easier. Yes, it may take a fair amount of time to read the labels, but it will be easier with the lists in hand.
  
• Stick with whole, naturally gluten-free foods. You don't need to buy a single items of specialty gluten-free food if you don't want to. (The only specialty gluten-free item that I make sure to keep in the house is gluten-free soy sauce.) You don't need bread or pasta for a healthy diet, so if it's too expensive to buy gluten-free bread or pasta, make use of other carbohydrate sources - such as rice/beans/gluten-free grains - that are cheaper than the expensive items.
  
• The previous item leads to this one - do most of your shopping in the produce section, the beans/rice section, the butcher counter, the dairy section, and the spice section. You can get the plain, basic, naturally gluten-free ingredients to make almost anything in these sections.
  
• The previous two items lead to this one - cook from scratch. It needn't be time consuming nor complicated, but if you're not used to cooking from scratch, it'll take a little time to learn. When tackling that learning curve, make sure to focus on recipes that are tasty, easy, and fastfor YOU to make - regardless of whether or not someone else thinks its a tasty, easy, or fast recipe. Many times, this might mean making up your own recipes.
  
• Use recipes, or food types, that stretch expensive items the farthest. Meat's expensive, but if you use it in combination dishes like stir fry, soup, stews, salads, and chilis, you'll combine it with a lot of less expensive vegetables and grains or legumes that will still leave you with a nutritious, but less expensive meal.
  
• Make good use of spices and naturally gluten-free seasonings in your cooking so you do get bored with bland food! There's no need for any of that even on a gluten-free diet.
  
• Take what time you can to read through this site, the Open Original Shared Link and other support sites. You need to be careful with the information you read - some of the stuff still on the internet is out of date - but there's a lot of information out there.
  
• Use the internet resources you have to find a local support group. Try typing your location and "celiac support group" into Google, or letting us know the general area you live in, for some ideas.
  
• Make your own baked goods from gluten-free flours instead of buying premade items if you opt to continue to have baked goods. The gluten-free flours are still more expensive, and it may become much more of a treat item than a staple, but making your own will still be cheaper than buying premade.
  
• Check out books on celiac and cookbooks for gluten-free diets and allergy diets from the library and look at the types of things they include in there. Again, sometimes information is out of date - or occasionally just wrong - but you'll be doing so much research, you'll soon learn about all that!
  
• Come back and read the posts and make your own posts often! It's fun, and educational. :-)
  

About some of your other questions:

You mention your daughter can't have corn - was that something that your doctor determined, or something someone suggested based on the fact she can't have gluten? Being celiac doesn't mean that she can't have corn, but it doesn't rule out other food sensitivities. Where does the recommendation for her to go corn free come from?

Celiac disease is not immediately life threatening, but as Kaiti mentioned, if she doesn't follow the diet, she is at increased risk for anemia, osteoporsis (even in her teens/twenties), nutritional deficiencies, dental problems, intestinal cancers, and other things. Untreated celiac does take many years off of a person's lifespan. But the treatment is exactly what you're looking at doing - a completely gluten-free diet. If she follows a gluten-free diet, her risks for all of these issues drop to very nearly an equal level as the rest of the non-celiac population.

And no, it's not really so rare, but it's vasty underdiagnosed. Be very glad that you found out what it was so early, as it will make a big difference in your daughter's life - a big difference for the positive.

[Guest taweavmo3]

Welcome to the board! I have a 3 year old who was just diagnosed two months ago.

I don't have alot of advice for you yet, we are new too. But, there are a couple of books that have been life savers for us so far. Dana Korn's "Raising our Celiac Kids" is great. So is "The Incredible Edible Gluten-Free Food for Kids" by Sheri L. Sanderson. Her buttermilk pancakes taste the most like regular pancakes, and her cake and pizza recipes are good too. You can buy packaged pancake mix, and frozen pizza shells from Kinnikinnik, but it's very pricey to do that.

This diet takes alot of organization in my opinion. Gone are the days when I could just zip by Super Walmart for a few things for an easy dinner. Also, in the beginning, I have found it is expensive at first. You have to have some basic ingredients on hand at all times that you can't find at the average grocery store. Things like Rice flour, tapioca & potato starch flour, xanthum gum, buttermilk powder. Plus, I had to replace alot of my spices, and those are NOT cheap when you add them up.

I always cook big batches of rice too, so that I always have something easy to fix my daughter. I try to put some peas and a meat in the rice to make it a balanced meal. Luckily, this is her all time favorite meal.

What is working for us right now is just keeping things simple, and giving myself time to adjust to the new diet. I've finally realized that in the beginning, I will make mistakes, we will have gluten accidents, and that's okay. If you get those two books I mentioned, you'll have a good base to start from and won't feel so lost (although being overwhelmed is unavoidable in the beginning!) Good luck!

[key]

We too are new to this diet. We haven't been officially diagnosed. Mainly because we are out of town for six weeks, but he had failure to thrive, weight below the chart, diarrhea, irritability, wouldn't eat hardly anything, etc. Anyway, I finally realized that he had all the symptoms and he was so sick i put him on the diet. He is 98% better in just 10 days. He was even better after just a few days. HE eats very well already and we believe he has gained weight. Going to the bathroom only two times a day now.

How was your daughter diagnosed and what were her symptoms. I found a great pasta, called "Pastodo". I believe anyway. He loves it and it is very much like the regular. Also at health food stores the Envirokids makes alot of great foods. Animal cookies, rice crispie treats, great cereal that my other two kids love. They are good. Also we do baked potatoes alot. I am just getting used to this diet too. Plus he can't have dairy for now, so that is hard. HE is so happy now though, that I wouldn't trade it for the world. He actually had chose to not eat gluten foods himself over time. I would find something he would eat, but he realized what made him sick and refused to eat it. If it was hidden in something new he hadn't eaten though, he would unknowingly eat it. He also loves the Wholesoy yogurt. I am planning on getting a breadmaker when I get home and learning how to make gluten-free bread. I used to do whole wheat by hand, but without gluten in the bread, I don't know if I could do it by scratch.

Just curious why you feel the whole family is on the diet? I have been on it with my son for a week. I am eating dairy though, but I don't eat meat. It makes it a bit hard to plan meals for my baby without meat or dairy. He just doesn't have alot of choices right now, but he doesn't care yet. He is only 14 months old. I also have him on an organic Soy formula with vitamins etc. in it and he loves that. It is high in fat.

Ok, I am rambling,but welcome. There is alot of information on this site. I have been reading all sorts of stuff on here.

Monica

[Guest AmandasMommy]

ty all so much for your input. but do you ever feel overwhelmed, cause you have someone elses health in your hands? like if i make one little mistake, like miss an ingredient, i could make my daughter sick.

i know how it is to take care of all my 3 children but when i remember what my baby looked like before being diag, i get scared, i dont want to make a mistake and hurt her.

all parents dont want to see their children sick. but to be the cause of it from my own mistakes and uninformational experience scares me.

[Jnkmnky]

Why do all the members of the family have to eat gluten free foods? You only mentioned that your daughter was diagnosed with Celiac. You shouldn't assume every member of your family has Celiac.

Our family of 5 has one member with Celiac. He's a 7 year old with an official diagnosis since the age of 3. I keep all of his food in a separate pantry. His food occupies one shelf in the fridge. He has his own peanut butter, jelly, mayo, butter, cream cheese,etc. I write his name on the lid or package and keep his stuff separate to some degree from everyone else's.

He has his own strainer for his pastas because I think the holes are too difficult to clean perfectly well. I bought a $35 toaster oven for his toast. I guess I could have bought a separate toaster, but since I have to make his little Pizzas all the time, I think it's a smarter idea to have a toaster oven. Otherwise you spend a lot of $$ heating up an entire oven for one 6in gluten free pizza.

There are a LOT of foods you can buy in your regular supermarket. The only foods I buy special for him are the gluten free bread from Kinnikinnick (he prefers the Black China Rice). Kinnikinnick also makes fabulous doughnuts. Chocolate glazed are his favorite, but he likes the chocolate dipped as well. Tinkyada pastas are the only decent brand of noodles out there. If anyone tells you differently, they've got numb taste buds. WholeFoods carries Tinkyada pastas. I think you can get those on line, though.

Anyway, going gluten free isn't nearly as bad as you think. I could feed my son from a local food store forever if I had to. He'd be eating a lot of corn burrito roll up sandwiches, maybe miss his doughnuts, but it can be done.

The best thing you have going for you right now is that your child is soooo young. You are in control of her diet. Her taste buds will adapt. You can give her total ownership over this disease. Make her feel likeshe controls her Celiac rather than the Celiac controlling her. Keep a positive attitude.

[Matilda]

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[Guest AmandasMommy]

ty both for your kind words and experience. i know it will take time to get used to, but for now i am trying to do my best.

thats a good idea about a toaster oven. my daughter loves pizza too. in time we all will get used to it, even she will. i guess i will have to try different kinds of gluten-free breads for now she just licks the pb off the bread, and just takes the middle out of the sandwich.

im also getting used to packing her food, like when we went to a pool party yesterday. of corse i got the looks, and why cant she have these hot dogs and all. but theyll have to deal with it too. im not being rude, but she just cant eat that stuff. to be easier ill just tell them shes allergic. no one else knows about this desease (yet) so its not their fault.

thanks joanie

[flagbabyds]

As a celiac who has had the disease since before I can remember I really understand what you are going through. Especially your daughter.

She will be thankful that she was diagnosed wehen she was little later on in life. I know my other celiac friends who were diagnosed later in life have cravings, but I don't remember what anything gluten-full tastes like. Which is a plus because I never had anything to base how bad glutenfree food tastes.

You should buy a rice cooker. Because it is fast, easy, and it keeps the rice warm all day so you don't have to keep warming it up. Also in the long run buying a bread maker and trying out diffferent bread recipies will be a money saver. YOu really just have to find one bread that your daughter likes and she will always like it. I have been eating the same bread my mom makes since I was 4, becasue it is what I am used to and I think that it tastes the best. It took my mom about a year for her to convince me to change the recipe jsut slightly, it turned out for the better, but that proves how much I love this one recipe.

Packing your daughter lunches will become second nature for you. I have not once in my entire schooling bought a single thing from the school lunch. My mom makes much better food, and I don't have to wait around in the lines. It will also become easier for you to explaing things to people. Start out slow at first, and then if the people seem interested, give them the details, but if they just kind of brush it off, don't waist your time trying to explain it to a person who won't remember the next day. I find that the people who constantly keep asking what I can and can't have are the ones who care about what I can eat, not the people who just try to feed your daughter something and then are like, Oh right, I remember now, well maybe she can have just a bite, it won't hurt her that much. It will

[Guest Lucy]

My 2 year old son was diagnosed 6 months ago. He was diagnosed with diabetes about 1 year ago. Our life and diets have been turned upside down. BUT... Celiac isn't so bad after you get used to it. I too had the EXACT same reaction as you. The first few time I grocery shopped I cried and cried. It is SOOO overwhelming.

I make some awesome hot dishes, we all love. I buy him gluten free bread and the rest of us eat regular because of cost. Same with spaghetti. I make gluten free noodles, and use KRAFT mac and cheese sauce. It is great.

CHEBE bread in the organic section makes an awesome pizza crust that we all love. it is for cheese balls or bread, but i make a pizza crust. It is a brazilian bread.

Bette Hagaman has gluten free cook books out there that have helped me. Her flour mix for baking is awesome. I like the chocolate chip cookies I make with her flour better than my old ones. I use the same recipe, just use her flour mix.

I make scallped potatoes and ham with her cream chicken soup base mix. Also progresso has a creamy mushroom soup you can use instead of cream of mushroom if you like large mushrooms. My son doesn't so I do her dry mix, and add hot water. It is good.

Fruity pebbles and Cocoa pebbles for cereal. Also at Hy-Vee (grocery store here) I buy their health market brand of frosted flakes and cornflakes. My kids DO NOT like the enviro kids brands.

Frito Lay chips and popcorn have been life savers for snacks. HOT DOGS are easy and fast. My son likes the new NUT THins. I would be glad to answer your questions if you have any. Or share my recipes. Just post or send me a private message.

[Jnkmnky]

Joanie,

Hot dogs are usually gluten free. Just check, of course. We usually bring corn tortillas to the movies so that my son can wrap his dog in a tortilla. You mentioned there might be a corn problem? I send my son to school with a hot dog chopped up in a thermos full of baked beans. Bring a thermos full of baked beans to the next bbq you go to if your child likes beans.

For the future, because you have a little one, here are some solutions I've come up with over the past four years: Keep some gluten free snacks in the car for unexpectedly long trips. You don't want to be caught on the freeway with no gluten-free food and a starving kid. Plus, it gives the child a bad feeling about their life-long disease. gluten-free ENER- G Pretzels stay well in the car, so do small bags of potato chips, a can of peanuts for protein deprived, cranky, tired children is always nice. Fruit snack packs stay well in a car. I mention "stay well in a car" because where I live the temp in a car can go well above the average temperature in Hell during the summer. Hint...NEVER keep peanut butter in your car.

Even if the doughnuts from Kinnikinnick seem expensive, they're not so bad if you consider the density of one of those things. I slightly defrost a doughnut in the microwave, cut it in half, put one half back in the fridge for the next morning. My 7 year old son can only eat half a doughnut with a glass of milk in the morning, so you see, you actually get twice as many doughnuts for the price they're charging if you're feeding a small child.

The pizza crusts from Kinnikinnick are IMO, the best. Again, since you're cooking for a small child, slightly defrost the crust, cut it in half, refreeze the crust you won't be needing. Doing this religiously is the best way to save money. I do not advocate cooking your own bread and I can't believe how many people do it. I'm not in the same position as many people here who seem to have *skills* in the kitchen. That's why I keep suggesting products from Kinnikinnick. I just get the warm fuzzies thinking about how simple they've made my life. I understand that when you shop at their site, the prices can seem scary. I just think it's relevant to consider that a small child doesn't need the full serving. 1/2 a doughnut and a glass of milk should be enough for a little kid in the morning.

Finally, I want to say, don't worry so much. You're doing great. Not to mention that the food companies have really come a looooong way in the past 4 years that I've been doing this. This is a good time to have this diagnosis. It all gets easier from here.