So just yesterday we got a tentative dx of celiac disease for my middle son. They did a blood test called a Celiac Panel and the doctor said any counts up to 11 was considered normal but his was a 15 or 16. So he suggested cutting out all gluten (wheat) for 6 mths then retest and go from there. Here is a little background on my son.

He is 6 years old. When he was born he had a cleft palate. He has had numerous surgeries to repair this. He also had a tongue tie (corrected) and had tubes in his ears to many times to count. We have also had dxs of behavior issues. He is also developmentally delayed, speech issues, learning disabilities, growth hormone deficient, been labeled for many years as failure to thrive, low iron for a long long time, sleepy all the time. For a long time I had mention this disease to the doctors. But everyone told me that if he wasn't in pain or had messed up stools he was fine and did not have this. So I gave up on this.

Finally tho we got a doctor that looked at the over all picture and decided to test anyways.And this is where we are at today. I live in a small town and the options out there in the store for my son is slim to say the least. And from what I have seen on websites food items seem to expensive as well. How are we ever gonna do this and not wind up in the poor house. Any advice.

the best way to get started, in my opinion - and we do all vary on this - is to stick to whole, naturally gluten free foods, until you learn what regularly available, mainstream foods are gluten free. that may mean that sandwiches are out, but a dinner of chicken, veggies, and rice is healthy, gluten free (assuming you don't add broths or prepackaged spice mixes that have gluten), and inexpensive. yes, it means cooking 'from scratch', but that needn't be time consuming nor complicated.

there are a lot of mainstream items that are gluten free, particularly depending on where you live, and a few substitutions (like gluten free pasta, if you eat much of it), that can make a big difference). but it takes some time (a few weeks), and there may be some adaptation in the way your son (and your family) eats. keep reading the board (there's a great recipe section) and searching through what's already posted.

and ask lots of questions - there's a lot of great, helpful people on here with lots of great advice!

Thank You for the reply. I think above all else the main thing I am worried about is bread type items and pasta type items. I looked up recipes for making the bread on my own but none of the flours listed are carried in my store. I asked a manager there and she said it would be hard for me to get our store to carry them items (like quick bread mixes and gluten free pasta) because there's not a market for that here. SO I looking for economical ways of getting that.

The only 2 gluten free flours sold locally here is soy flour and corn meal.

you can order them off the internet, but you can also use corn tortillas (regular ones, in most every store) or lettuce leaves to 'roll up' sandwich fixings, or just find alternatives to sandwiches all together. I know, that can seem shockingly drastic after we've all spent decades thinking that lunch means a sandwich! and it's true that they're awfully convenient, but gluten free breads are more expensive, less nutritious (made from more refined flours, in general), not as tasty, don't hold up as well, and aren't necessary. (that said, there are some good recipes around here, and I don't mean to imply it has to be given up - just emphasizing that changing the direction of thinking that help.)

pasta happens to be an easy one - tinkyada is the favorite of a lot of us, though if you have trader joe's near you, they also carry gluten-free pasta. bulk online orders (or a large, long distance shopping trip for staples) every few months isn't uncommon around here either.

I have another question. What cereals that are readily available in most supermarkets are gluten free. I ask this because his doctor recommended corn flakes and rice crispies to us as a gluten free breakfast for my son (mainly a weekend and summer thing). But I was just reading a thread a little further down that said those 2 have gluten in them. So what are some others that are gluten free?

I have heard of trader joe's but we don't have one anywhere near here (SE GA usa). The closest thing that I know of that has a small selection of gluten free stuff is Publix(1hour away). Even the small local health food store does not carry gluten free products.

There are very few mainstream cereals that are gluten-free. Kellogg's adds gluten (in the form of malt flavor) to everything they make it seems. We use corn flakes and rice crisps from Nature's Path. They are a Canadian company. I don't know if they are sold in the US. They are organic, and are usually sold in a specialty section rather than being mixed in with all the other cereals.

BTW, when you said "gluten breakfast" I trust you meant to type "gluten-free breakfast."

Ya I meant gluten free there. I'll go change it.

Would the local health food store be more open to carrying some gluten free products? Tinkyada pasta is definitely a staple in our house. What supermarkets are in your area? Here are some things that my 2 1/2 year old loves that you could make without having to get anything 'special' -
Rice pudding - (I just make some plain white rice with a little less water than called for, then add some milk - we use vanilla soy, but you could use regular - and sugar and cinnamon and cook it till the rice is done and a bit on the creamy side -- seriously, the kid could eat it every day
'Banana pancake' = a beaten egg blended with a ripe banana and fried like a pancake
Veggies! he especially loves parboiled carrots that have been finished in some butter, brown sugar & ginger powder ('ginger candied carrots'), raw red peppers, celery, broccoli...
Fruit! Canned peaches & pears are at the top
Chicken - especially a good roast chicken
Meatballs - just don't use breadcrumbs if you don't have any gluten-free bread
Corn tortilla rollups - the corn tortillas need to be nuked a bit, or thrown in a hot frying pan for a few seconds, then stick a piece of cheese on em, let it melt & roll up & serve

As far as 'mainstream' gluten free cereals, I think fruity & cocoa pebbles are gluten free, but then again those are sorta 'junk' cereals so wouldn't want them to be a staple. We live on Envirokids corn flakes and Perky-Ohs (like cheerios).

Some 'staple' things I would order online, or try to get that little health food store to carry:
Van's gluten free waffles - they're really good, and if your kid eats waffles, you'll want these
Rice pasta - like many others here, Tinkyada is our preferred brand
Bread mix OR an assortment of gluten-free flours, depending on your kitchen skills. I love the favorite sandwich bread mix by Gluten free pantry - you can get a case of 6 on amazon for about $26, which isn't quite cheap but it's not super expensive either (especially with their free shipping). It's REALLY easy to make, you don't need a bread machine - I do mine right in the oven - and it tastes great. If you're comfortable in the kitchen, you'll want to have some brown and/or white rice flour in your pantry, some sorghum flour, maybe tapioca flour...you might want to browse for some bread recipes before buying since the flours are a bit pricier. Any chance there's an Asian food store in your area? You might not even know about it - if you have a Chinese restaurant close to you, I would go in there and ask where they shop. You might be surprised to find a little hole-in-the-wall grocer that you never knew existed that would definitely have rice flour and maybe even rice pasta. I never even knew about the one close to me until I overheard some Indian women talking about a place I'd never heard of...I asked them about it and discovered this little place that carries a TON of gluten free stuff - and they were really nice & helpful when I first went in looking like a total dork.

E

cocoa pebbles and Trix are gluten free. There's another one called Dora Stars or something like that. Some stores carry Health Valley Rice and Corn Crunch 'Ems. They're basically gluten free a substitute for Chex. I've never been to Walmart, but a lot of people shop there and find a lot of gluten-free things there. Just make sure to read labels frequently. They do change formulas in cereal without warning.

Good job on checking the cereal the doctor recommended!

Amazon has free shipping on the gluten free pasta. You buy it in batches of 12 for about $35 or so. One bag is a pound. It's really quite good. Most of my gluten-eating friends and family really like it.

You can also get gluten-free pasta in the Asian section at most major supermarkets.

I buy most of my gluten-free flour on line at http://www.authenticfoods.com This is the one thing that is very expensive. But you can make good gluten-free desserts like custards, pudding and homemade fudge without fancy flour. Corn meal is a good substitute for flour if you want to "flour" some meat and cook it.

What types of things do you like to cook? What does your son like to eat? Maybe we could give you some ideas for recipes/menus when we get a feel for what your tastes are like.

It is a shock at first, but with some creative cooking you'll never miss it.

Welcome! I'm the mother of a newly diagnosed 8 year old, so I've recently been right where you're at, but now I'm in a much better place! My son is doing so much better and has turned into this even greater kid than he was before! So get excited! OK, pep talk aside, here's my best practical advice:

Cereal - Little Einsteins and Mickey Mouse Club are both mainstream and gluten free. Regular corn flakes and rice krispies have malt flavoring, which comes from barley and thus has gluten. You can order some cereals from amazon that really cut the price. We like Erwhon Crispy Rice (can't tell the difference from Kelloggs) and Gorilla Munch (a lot like Kix, but with a little bit of a glaze).

Pancakes - we also buy from amazon (they have free shipping on orders over $25). Pamela's pancake mix is our favorite.

Eggs, eggs, and more eggs!

Spaghetti (yep, you guessed it, we get it from Amazon) - we like Quinoa A LOT!! Ragu Traditional is the sauce we use.

Xanthum gum - you're gonna need it! It looks expensive, but it really does go a long way.

Like a previous poster suggested, you can do so much with your normal cooking. I made a list of things I made pre-Celiac and then went through them to see which I'd have to change and which I could still do easily.

If you have a Wal-Mart close by, they are great about labelling their Great Values brands. If they're gluten free, they say so right under the ingredients.

Lastly, I highly recommend Danna Korn's Celiac Kids book. It was wonderful in helping with the coping and realizing this isn't the end of the world. My hubby and I were just talking tonight about how great it is that we know our son has Celiac. He has so much more energy, is less moody, bascially he's on the road to healthy! And he didn't have to have surgery, or go through chemo, or have lots of shots. I just have to cook for him. And I may not be the world's greatest cook (far, far from it - cooking was never one of my strengths), but he thinks I am. And we have a strict keep it positive attitude around here (although I cried for several weeks in the beginning). It's just food!

Good luck and hang in there! In a month or two it will be much easier.

ConfusedMommaof3,

Welcome to the club!! You have found a great resource in this forum!! It seems daunting at first, but it won't be long and you'll be a pro. The exciting thing is that as I read your list of your son's symptoms, I saw the potential for great improvements for him on a gluten-free diet. I wish you and him all kinds of luck!!

OK, here is a listing of mainstream companies that do not hide the gluten in the label. Therefore, you will be able to READ the label (get your reading glasses) and if you do not see the words Wheat, Rye, Barley or Oats on the label, then it is OK. Those items will not be hidden in any of the vague terms like flavoring or spices.

http://www.glutenfreeindy.com/foodlists/in...donothidegluten



If there isn't a health food store within a reasonable drive, I would probably buy my specialty items in bulk from someplace like Amazon. I would probably just totally skip the bread for awhile as it is NOT like regular bread and would probably be best to have a little time to "forget" that taste. My daughter does not care for the gluten-free bread at all and prefers rice cakes or corn thins.

Our standard meals include

spaghetti (Tinkyada pasta)
Tacos (Ortego seasoning and sauces and shells)
Hot Dogs (Oscar Mayer brand lists their gluten)
Chicken (grilled, baked, fried - dredged in gluten-free flour mix)
Rice
Potatoes
Cheeseburgers (no buns)
Fries (most Oreida are fine)
Casseroles (with chicken and rice mostly)
enchiladas (made with corn tortillas)
omlets
meatloaf
au gratin potatoes (Great Value brand is gluten free)
All fresh fruits and veggies (if you can get him to eat them that is )
Most frozen fruits and veggies - watchout for sauces
Rice Cakes (good with peanut butter or tuna/chicken/ham salad)
Peanut Butter
Cheese Sticks
lasagne (Tinkyada noodles)
Roast Beef
Cereals: Dora the explorer stars, Trix, Fruity Pebbles, Coco Pebbles, Kaboom - you can make a rice crispy treat thing out of the Fruity Pebbles
Blue Diamond Nut Thins (Chedder or Ranch)



If you are looking for a quick meal, the Hormel Roast Beef w/aus jus (NOT Gravy) is gluten-free and then Betty Crocker's Instant potato buds are too. (My kids love instant potatos . . . they did NOT inherit that from me ) Sometimes you just need something FAST.

Whenever I make fried chicken, I always make extra . . . cut into small strips or nuggets and then freeze and reheat on a night I just don't feel like cooking. I also make big batches of pancakes (we love Pamela's brand) and freeze those also for quick, nuked pancakes on school days.


If you have a favorite food item that you would like a replacement or recipe for, post here and you'll get all kinds of good advice. . . especially if you are going to have to mail order something, that would be an expensive item to make a mistake on (but just to warn you, it WILL happen)

Lots of new replys lets see if I can answer everyone in one post.

I don't know if the health food store would be open to that or not. They were not very helpful when I called them. And honestly I don't know if anyone here in this town would be open to it because we are small and as far as I can tell not much of a market here. We only have 2 grocery stores: WalMart and a budget type store called Harvey's. No Asian markets or anything like that here.

A sample of things he likes. Actually its a pretty small list because as the years have gone on he has became more and more picky about his food. So the list has really trickled down to not much at all. He likes pasta (like spaghetti) but over the past 2 years he has preferred the canned variety over home made. Pizza was a big fave of his but the last few times he ate very little. Like maybe 1 - 1 1/2 slices then just the cheese off the rest. Rice and gravy but I have slowly learned how to make that homemade. Cereal is always a fave here. As well as sandwichs, pancakes, bananas, eggs, french toast. snack cakes, other than meats thats about what we can get him to eat.

Where can you get Xanthum gum at? And If I missed anyways question or something you need to know please tell me.

Dear Confused,

I was really interested when I saw your son has a cleft palate. I too was born with a cleft palate along with a younger brother. I have been wondering what relationship their might be with this. My mother has DQ2 and DQ1 0603 while my dad has both DQ2 and DQ8. I ended up with my Dad's DQ2 and my Mom's DQ1 0603.

Did they test your son's genetics? Have you been tested. I also have 2 brothers with type 1 diabetes and was wondering if there is juvenile diabetes in your family?

As for food, I would really just go back to the way your Grandmother cooked which is just natural food. Meat, fish, eggs, rice, potatoes, vegetables and fruit. After he feels better add some rice pasta and buy some premixed gluten free flour for those special occasions.

Gluten Free is really a much healthier way to eat, it just takes time to rethink the way we eat.

Good Luck

When shopping, a good rule of thumb is to stick to the perimeter of the store. All fresh produce and lean meats are safe. You'll have to be careful about deli meats as many contain gluten.

Over the years, I've learned to make good use of the sales flyers that come to the house. If you can buy in bulk when the sales are on, you can apply the money you save towards some of the specialty gluten-free foods. And when buying gluten-free foods, order it over the internet. Most of the time, it's the least expensive way to go and it offers convenience as you don't have to drive 50 miles to get to a health food store, thereby decreasing your fuel costs. A.m.a.z.o.n. is great for when you know the products you like as they sell in bulk at great rates. But with some gluten-free products, it's not as practical as you have to order a case of a food that you may potentially not like. In which case, I order from other sites like v.i.t.a.c.o.s.t. or even the gluten-free mall.

The gluten-free diet can be both a blessing and a curse at times. The curse is that there won't be a lot of "convenience" foods available to you. The blessing....it is so much healthier for you that the benefits (both short and long-term) will far outweigh the perceived inconvenience of it.

To start off, stick to whole foods that are naturally gluten-free. Mashed and baked potatoes are a simple and easy side dish to accompany meals. Stews, coleslaw, salads, meatballs and cabbage rolls are also very easy to make gluten-free. I roast a chicken at least once a week. Not only does it provide an easy meal, the leftovers are great in chicken salad, soup and in stir-fry.

This change can seem overwhelming the first few months. The best advice I can give you is to stop focusing on all the things your child can't have and to begin focusing on all of the foods that he CAN have. There are still a lot of options out there once you look.

Also, you may want to subscribe to Living Without magazine. All the recipes in it are gluten-free and many cover other food allergies. They have great recipes and also will introduce you to many of the gluten-free foods out there (name brands and new introductions). Sometimes there are coupons as well that can be used on-line. A good gluten-free cookbook may be in order as well once you get settled. I like Carol Fenster's cookbooks. Not only are her gluten-free recipes good....they also provide me with recipes that are free of our other allergens...dairy, soy and egg.

Yes we had genetics done twice I believe. He has a duplication of the long arm of the 10 chromosome. The geneticist said he is not sure if that is why he has the cleft or not. We do know via ultrasounds when I was pregnant that he never lifted his head much. He always had his chin down toward his chest which the doctors say may have played a role in the cleft development. But so far they have not really found and common genetic markers that are common to other cleft children if that makes sense. Oh and he has a slight Perrier Robin syndrome (as do I and his father) but its not a major case.

No diabetes in the family. We have had other health issues tho. Like my oldest son (almost 8) had to have kidney surgery when he was 4. He had Hydronephrosis of the left kidney and had to have surgery. His problem was the upper part of the tube that runs from kidney to bladder was constricted and looked like a squiggly line. So we had part of the tube removed. Also my youngest (age 4) developed tonsillitis a little over a year ago. When his tonsils and androids swelled they never went down and obstructed his breathing so he had to have them removed. Also he suffered from reoccurring staph infections on his face. No one seems to have an idea why they keep cropping up.

On the potatoes he has never been a big fan. And do you guys have any tips on how to get him to eat veggies? Veggies have always been an issue around here.

Maybe try ranch dressing (we use Kraft) for the veggies. How about fruit?

You mentioned he likes pizza. There are gluten free pizza crusts and crust mixes, so you can probably keep that for him. My son likes gluten-free just as well as regular pizza.

You'd probably have to order the xanthum gum, but your health food store might have it. You'll only need it though if you decide to bake. My son really likes a couple of the white bread recipes we've tried, so we make that weekly. We all love banana bread and blueberry muffins. We use those often with our gluten eating family and friends and they are either very polite or they like them as much as we do!! But none of the bread products we eat are "healthy". They're potato starch and corn starch, so they are a "treat" versus a healthy grain in the meal.

Great news on that rice and gravy! You can make that whenever you want! My son loves it too! In fact, I'm making a turkey tonight so he has turkey rice and gravy for lunch this week!

I think I saw a spaghetti o's kind of product on gluten free mall. I don't remember for sure, because my son never liked those. If it's one of your son's favorites you can check it out.

Have a great gluten-free day!!

My daughter likes gluten free pizza - she NEVER liked the gluten pizza. In hindsight, I wonder if it bothered her stomach.

Fruits and Vegetables . . . that's a universal problem, Celiac or not!!


My kids do a decent job of eating fruits. To get a larger variety of fruits in them, I puree frozen fruit and overly ripe bananas with V8 Splash juice and make slushies then freeze the leftovers into popsicles. As long as the color turns out to be red (from a lot of strawberries), it's good because every kid knows that red popsicles taste better! I can get blueberries and mango and pineapple in them this way. Also, I'm in the midwest. In the winter months, our produce has a lot to be desired, so I can use the frozen fruit to make the slushies.

On vegetables, I'm not much help. I can get them to eat carrots if they dip in peanut butter. Some kids like celery this way, too, but not mine. I've also roasted vegetables and my son LOVES carrots this way. I've added a bit of pureed sweet potato to spaghetti sauce and got away with it. I'm planning on adding a bit of pureed cauliflower to mashed potatos or to chicken/rice casseroles. My daughter loves salad and my son is just starting to develop a taste for it. We started this process by making "salad sandwiches" which is what my daughter calls them. She would take a piece of lettuce (maybe 2 inch square) put a little shredded carrot and shredded cheese in it, roll it up and then dip it into a pool of ranch dressing. We probably started out with just 1 "sandwich" and worked our way up and now she'll eat a bowl of salad. My son finally started eating a little salad when we gave him a taste test of several different dressings (all stuff we had in the fridge) - he just tried a little drop on his finger and decided he really liked Western dressing. Corn - they like. Peas - they just tolerate (but the frozen peas work best for us). Asparagus - they are required to eat a few bites and they suffer through because we put butter and brown sugar on it.


Good Luck and I'll be watching for other veggie hints, too!!!!

Hi again,



I wonder if they would do the Celiac HLA's on your son. I am thinking it might have been caused by a folic acid deficiency in my mother who probably has Celiac but she is 78 and doesn't really care to know at this point in her life and has cut down on her wheat consumption....so she says. My brother with a cleft also has the exact same HLA's as I do. He thought he had Celiac but said he tested negative. We are not close so I do not know if he even got the right tests done. This area is not known for their expertise in Celiac.

You sure have had your hands full with both children. I hope things calm down soon for you.

As for veggies, Have you seen the Veggie Tales? It is an older cute video of singing and dancing Veggies. Maybe if they eat some veggies they get to watch the shpw.

Also, I always called things names like
broccoli- trees...they thought that was funny and would eat trees.
I also would cut bananas in half lengthwise and put peanut butter in between. I called these canal boats because we live near the Ohio and Erie Canal...they loved eating canal boats. They ate those for lunch and we weren't diagnosed until a couple of years ago.

I also made apple and peanut butter sandwiches core and slice apples and spread peanut butter between 2 apples. I called these lips when the apples were red. You could put raisins in for teeth, marshmallows are fun but not as healthy.

You might try growing alfalfa sprouts and letting them grab handfuls when they are hungry...they loved eating .... grass

It also helps to have a good eater sitting with a picky eater when trying something for the first time. Toddlers are great at convincing someone to try something they might not eat when no one is with them. It is the "Mikey likes it syndrome!".

There are some great ideas here but really I would stick to whole natural foods as much as possible.

Tinkyada makes a pasta called "Little Dreams" they're fun shapes. It's not canned, but it might do the trick. Bob's Red Mill makes an amazing pancake mix. You can get them both in bulk at Amazon.

Publix would probably have an Asian section where they would carry rice noodles. Other people could give you a much better rundown of what Walmart has, but I understand from reading here that they do carry a lot of stuff. The manager might even help special order some things for you once you get your feet wet.

You can make pizza out of a corn tortilla with gluten free tomato sauce and mozzarella cheese. if he just picks off the top it doesn't matter too much what you make the crust out of.

Not sure what to substitute for snack cakes, other than homemade gluten free muffins. I buy flour here: http://www.glutenfree-supermarket.com/ They have a lot of gluten free cake mixes you can try to see what he likes.

I primarily bake from the Annalise Roberts cookbook:
http://www.Lame Advertisement/Gluten-Free-Baking-C...2126&sr=8-1

It's expensive, but in our case it evens out a bit because we go out to eat a LOT less than we did pre-celiac. I think this year I will spend about $300-$500 on gluten free 'specialty' items like rice flour and Kinninnick cookies.



For the time being, don't worry about variety as long as his diet is balanced, it doesn't matter if he's eating the same few things. He'll open up his diet when he feels better if this is the problem. My son eats mostly pasta, fruit, cheese and cereal. I thought the nutritionist was going to call us out on the carpet over his diet, but she said he was getting what he needed. We supplement him with vitamins and a chewable probitioc, and he's doing fine.

Best of luck!!

We use Tom Sawyer All Purpose Gluten Free Baking flour for all of our baking. The flours are already mixed along with the gums. I can use all of my old recipes and just substitute the Tom Sawyer flour for whatever wheat flour I used to buy. It is a one to one ratio. For instance, if the Nestle Tollhouse cookie recipe says 2 1/2 cups flour, you use 2 1/2 cups tom sawyer flour. It is really great stuff.

www.glutenfreeflour.com

This has been our lifesaver! Everyone else has listed the other products we use. BTW Wal Mart corn tortillas are glutenfree and label it on the package. I believe all of their Wal Mart brands are labeled gluten free if they are. Maybe aske at the customer service desk if they have a gluten free shopping guide. I know some markets do that, but I am not sure about wal mart.
Good luck! Once you get in the gluten free groove it gets much easier. Take care!