New Here And Need Help. 2 Yr Old Has Celiac

[Lainey]

My name is Julie. Hello everyone! I am still in shock and overwhelmed. I know that here I can find some help.

First- I just got back from Chicagos Childrens Memorial to see a Dr to confirm blood test. We are scheduled to have the scope biopsy Jan 16. We are to continue the reg diet. However- prior to seeing this Dr- the pediatrician told us to start the gluten free diet. I went to the local health food store and was overwhelmed with the limited choices. I did buy a few of my picky eaters favorites. However- she wont eat them.

I would like to know if anyone has a list of kid favorites. Her favs are pastas and pizza and bread oh and dont forget the american cheese. I am beside myself on how to get her to eat this stuff. I tried some and I dont like them either. HELP.

My daughter was 2 in Oct. She weighs 22lbs 15oz and is 34".

She has no symptoms at all. So we are still shocked. And I dont know anyone in the family that has this either. Any help and or advice would be greatly appreciated.

Thanks!

Julie

[Cam's Mom]

Hi Julie! And welcome! You will indeed get lot's of support and help from this wonderful group of people.

We were also surprised and shocked by the diagnosis of our daughter when she was 5. And, the food thing is just totally overwhelming and seems just impossible when you sit for a moment and think about it. But here is the good news - we've been at it for almost 2 years and it is fine! We are right back to our lives as usual with the one exception that we don't go out to eat anymore (and I am not belittling that - that is a huge adjustment and still difficult).

As for starting on the diet, it is true that if she is to be scoped in January, you should keep her on the regular diet until then, otherwise the results will be inconclusive. But in the meantime, I would highly recommend that you start to introduce some food substitutes now, along with her regular diet so that when you pull the plug it won't be all new foods at once. When we did this, I bought the gluten-free pasta (tinkyada brand is our favorite) and used the cheese pack from the Annie's that my kids were used to so it wasn't too different. Just break it in slowly. Like start to sub out some of the snack foods - glutino pretzels instead of regular pretzels, etc. It is true that there are many disgusting tasting gluten-free foods but there are many that are wonderful. I would be happy to share a list with you. Some essentials are Pamela's baking mix for pancakes and waffles, tinkyada pasta, Pamela's choc. choc. chunk cookies (too good!). Ian's and Bell & Evans both make gluten-free chicken nuggets.

Do you cook/bake? If you do - you will be able (in time) to recreate every single favorite she's got now, so don't worry! We eat pizza, lasagna, fries, mac 'n cheese, tacos, nuggets, you name it. It is just very hard to wrap your brain around this - but truly it will get easier. Also don't forget those many, many naturally gluten-free foods like fruits, veggies and probably even that American Cheese (we use Horizon). Please feel free to e-mail me if I can help with food lists or recipes.

Hang in there! The good news is that she is so little she actually won't remember what some of her old favorites tasted like - unlike us less resiliant adults!

barb

[Lainey]

Hi Julie! And welcome! You will indeed get lot's of support and help from this wonderful group of people.

We were also surprised and shocked by the diagnosis of our daughter when she was 5. And, the food thing is just totally overwhelming and seems just impossible when you sit for a moment and think about it. But here is the good news - we've been at it for almost 2 years and it is fine! We are right back to our lives as usual with the one exception that we don't go out to eat anymore (and I am not belittling that - that is a huge adjustment and still difficult).

As for starting on the diet, it is true that if she is to be scoped in January, you should keep her on the regular diet until then, otherwise the results will be inconclusive. But in the meantime, I would highly recommend that you start to introduce some food substitutes now, along with her regular diet so that when you pull the plug it won't be all new foods at once. When we did this, I bought the gluten-free pasta (tinkyada brand is our favorite) and used the cheese pack from the Annie's that my kids were used to so it wasn't too different. Just break it in slowly. Like start to sub out some of the snack foods - glutino pretzels instead of regular pretzels, etc. It is true that there are many disgusting tasting gluten-free foods but there are many that are wonderful. I would be happy to share a list with you. Some essentials are Pamela's baking mix for pancakes and waffles, tinkyada pasta, Pamela's choc. choc. chunk cookies (too good!). Ian's and Bell & Evans both make gluten-free chicken nuggets.

Do you cook/bake? If you do - you will be able (in time) to recreate every single favorite she's got now, so don't worry! We eat pizza, lasagna, fries, mac 'n cheese, tacos, nuggets, you name it. It is just very hard to wrap your brain around this - but truly it will get easier. Also don't forget those many, many naturally gluten-free foods like fruits, veggies and probably even that American Cheese (we use Horizon). Please feel free to e-mail me if I can help with food lists or recipes.

Hang in there! The good news is that she is so little she actually won't remember what some of her old favorites tasted like - unlike us less resiliant adults!

barb

[Lainey]

Thanks Barb! I am trying to read as much as possible about this. We are still wondering what side of the family it comes from. I have 3 older boys 5,13,& 16yrs old from a previous marriage. They all seem to be okay. I thought I was ok and my husband thinks he is fine and his side of the family. I am going to get tested as well as my husband.

I found it hard to believe when my daughter is happy almost all the time...no stool problems and none of the symptoms that I have read up on. So if that is the case that she has no symptoms...maybe I or my boys could have it too.

I would love to hear any toddler friendly menus. She loves Mc Ds Mc Nuggets. And she loves italian bread. Is there any cereal in the grocery store that she can eat? She loves Trix and Fruity Pepples and of course most others. I am a bit overwhelmed on all the little ingredients that she cant have. I thought that maybe someone has specifics on what is not forbidden. I am worn out just trying to find stuff she will like after the scope is done.

I would love to hear anyones KID TESTED FAVORITES!!!

My 2yr old doesnt drink milk... but has it in her cereal. But she wont drink it if its in a cup.

She doesnt like meat-except the chicken nuggets from McDonalds and the Gerber chicken sticks. But I know that those are out. She is not big on veggies except corn- I know...not much there.

Fruit is apples and that is about it. She is very picky. WOnt even try it if she doesnt like the way it looks.

YES- I need lots of HELP!!

[buffettbride]

If she shows no symptoms, how did you know she has it?

Many mainstream foods are gluten-free AND good.

Here's a few good starter foods for a gluten-free toddler/preschooler:

1. gluten-free hot dogs (we get the JennyO turkey hot dogs)

2. Tinkyada pasta (almost indistinguishable from wheat pasta)

3. Kraft American Singles are gluten-free I believe (Kraft will list any gluten ingredients clearly. Kraft is your friend)

4. Dora Stars or Little Einsteins cereal are both gluten-free and decent toddler food--kind of hard to find though, I had to go to a WalMart Super Center to find it.

5. Most fruit snacks are gluten-free

6. Yoplait yogurt

Hope that helps and good luck with your gluten-free journey. It is very overwhelming at first, but before you know it, it will become second nature!

[Landyn'sMom]

Lainey,

I have good news! Fruity Pebbles, Trix, and Gerber chicken stix are all gluten-free! Actually, Trix, Fruity Pebbles, and Cocoa Pebbles are about the only name brand cereals that are gluten-free! Beware of some of the names on other cereals that sound like they should be gluten-free, though. Corn Puffs, rice krispies, and the Chex line all have gluten in them. I already made this mistake, so you don't have to. Its the malt flavoring that does is.

I have a one-year-old with celiac disease, so I feel your pain! Bad news is, Mc D's is not gluten-free friendly. I would recommend finding a new favorite fast food. I like Wendy's. They have a descent selection and I've never gotten sick there. (I also have celiac disease.) Here's a link to their website:

Open Original Shared Link

There's a link to their gluten-free menu in the botton left corner. I also recommend Out Back Steakhouse for family outings, if there's one near you. This is the most gluten-free friendly restaurant I've found. They have a gluten-free menu available there, just ask for it. Also, you can view it online.

As far as meal time goes, Velveta cheese is a life saver! Find yourself a good pasta and velveta makes mac and cheese just like old times. Everyone has to shop around to find a pasta to their liking, but I would start with Tinkyada and Glutano. Stay away from Glutano Animal Shapes! Trust me!

Mi-Del makes a good line of cookies. I get their arrowroot cookies and ginger snaps. My local Kroger carries these. I also found that many times your grocer can order things for you. Make a list of things you want to try and then get to be good buds with your grocery manager! It's usually cheaper than going to an organic store and there's never any shipping!

(Sorry so long...trying to think of some of the basics for you! )

Gerber's fruit juice snacks are all gluten-free. I also like Hunt's pudding cups. I get chocolate, but I think most of them are gluten-free.

Oh, BREAD! In MY experience, frozen breads NEVER work out. Sadly. They always crumble, or turn to mush. This is what I do...I buy Gluten Free Pantry sandwich bread mix. This stuff is outstanding! You don't need a bread machine and I buy it at Kroger. Follow the directions exactly. The easiest way to screw up bread is to whip it too long. It's not the dough you're used to, so be gentle. Let it cool completely. Slice it, and freeze it. I put mine in baggies, two slices per bag. Just before she wants a sandwich, take out the bread and thaw it in the oven at about 300 degrees. A few minutes each side does well for me. I take it out just before it starts to toast. Thawing it on the counter allows the water to soak in and I can't stand even the slightest bit of sogginess! The last thing to remember about gluten-free bread, dressings also make it soggy. Mustard, jelly, mayo...they all do their damage. I always put the wet stuff between a barrier, like jelly between two layers of peanut butter.

As far as symptom free goes, my son and I both primarily have neurological symptoms. He gets muscle weakness. I get fatigue, mood swings, irritability and difficulty concentrating. My husband calls it "gluten brain"! It maybe harder to notice in your daughter because she's so young. And "2" is defined by mood swings, so that would make it even harder. Thinking about yourself or your husband, think about your personalities also. Not just your GI tract. It also contributes to ADD like symptoms.

I wish I had found out about this years ago! I would have made much better grades in school! Well, good luck! Hope I helped and keep us posted!

[Carter's mom]

Julie I can totally relate what you're going through. When my son was released from the hospital at 16 months of age, we had to come home and throw out everything from our cupboards and fridge. It was totally overwhelming and I had no idea what to feed my son.

My son is now 3 yrs old and we love the following products:

1. Tinkyada pasta. We order this off of Amazon, we get the brown rice pasta, I think it cooks up a bit better than the white version.

2. Jennie-O turkey hot dogs, my son loves them.

3. Kinnikinnick products like their pancake mix, Montanta's Chocolate Chip cookies are to die for and we love love love their gluten free individual size pizza crusts! They are the best I've had so far. Their donuts are awesome, pretty much all their products are great tasting.

4. Prego Traditional pasta sauce

5. Walmart brand bacon or Hormel black label bacon and sausage

6. Silly Yak bakery white bread. This is the best gluten free bread we've had thus far and most of all my son likes it.

7. Genoa salami

8. Envirokids Koala Crisp cereal and they also make one similar to frosted flakes.

9. Starkist Albacore tuna

10. Gogurt

11. Caprisun kiwi strawberry flavor

12. Country Crock margarine

13. Dryers ice cream... almost all are gluten free unless it states that it has obvious gluten like brownies, sundae cone, that type of deal. We love mint chocolate chip.

14. Cattleman's original BBQ Sauce (the only one I've found to be gluten free).

There's a lot out there you just have to constantly call the manufactuers, etc.. and check and recheck the gluten status.

I make my own bread crumb because I've notice the sodium content in gluten free bread crumbs tends to be sky high, that's not healthy for you or your little one.

If you need further help please feel free to email me. fourbusdons@cox.net

Sarah

[Carter's mom]

I have a question regarding McDonald's I thought they were ok as long as you steer clear of the bread. My son has a plain hamburger patty with nothing on it. Our local McDonald's doesn't use oil containing gluten so he has been ok eating the french fries.

My son has a very low tolerance to gluten, he almost died at 16 months of age from celiac disease. His body shut down and his specialist said had he wouldn't have lasted another month. By this point he was dying. Now... fast forward to today he's thriving, chunky and happy. He loves his occassional McD's.

[Darn210]

Hi Julie and Welcome,

Here is a good link

Open Original Shared Link

This is a list of companies that list their gluten on their labels. That means you can go to the regular grocery store and READ the label. You will not have to call for an interpretation of a vague ingredient such as "natural flavoring".

Kraft and Oscar Mayer (part of Kraft) are two biggies that fit in this catagory.

Tinkyada is our favorite pasta

Bell&Evans is our favorite store bought chicken nuggets (Check in the recipe section for some good recipes, I make my own and then freeze them for use later because we go through so many)

Pamela's Pancake mix is a favorite

We do Ortega tacos once a week

My daughter prefers rice cakes to gluten-free bread

You have a little bit of time before your endoscopy. Check with your local health food stores - sometimes they do the free samples and you might get to try something without having to buy it. (Our local Wild Oats is having one this Saturday.) We have had plenty of expensive purchases that did not pass the taste test and ended up in the trash. When in doubt, ask here.

[Landyn'sMom]

Carter's Mom, your right about the patty. But beyond plain meat, there isn't much more. I guess I need more substance!

[Landyn'sMom]

Carter's Mom, you got me to thinking about McDonalds so I checked up on it. You should look at this. McD's says their fries contain wheat!

Open Original Shared Link

Hate to be a bummer, but I'm glad I looked!

[Ridgewalker]

We like -

*Tinkyada pasta

*Kinnikkinnick frozen sandwich bread (I just throw it in the toaster frozen)

*The cereals mentioned above, plus Envirokids Gorilla Munch (like Kix,) and Whole Foods 365 brand Cocoa Comets (like Cocoa Puffs.)

*Jif Peanut Butter

*Smuckers Preserves

*Oscar Meyer Franks

*Pamela's Pancake & Baking Mix

*Pamela's Brownie Mix

*Namaste Chocolate Cake

*Kraft Deli Deluxe American Cheese

*Annie's gluten-free Mac & Cheese

*HEINZ Ketchup is safe. Hunts is not.

*Homemade chicken nuggets- Mix 1 lb. ground chicken with one egg. Crush gluten-free potato chips as fine as you can get them. Roll chicken globs in the crushed chips, and bake at 400 degrees until chicken is done. Tastes and smells close to McNuggets, although they look different.

*Utz brand potato chips

*Glutino Pretzels

*Van's Waffles (make sure they say gluten-free on the front of the box.)

*Bob's Red Mill Chocolate Chip Cookie Mix (I always add extra choc. chips)

Don't forget- you must get a separate toaster for her bread. Putting her bread in your old toaster will contaminate it. Wooden spoons will absorb gluten, and should not be used for her food. Double dipping a knife into peanut butter, mayo, jelly, etc with wheat bread contaminates the whole jar.

This gets much, much easier with time, as others have said. Stick around, ask lots of questions. This is the best place to get answers!

[Ridgewalker]

Carter's Mom, you got me to thinking about McDonalds so I checked up on it. You should look at this. McD's says their fries contain wheat!

Open Original Shared Link

Hate to be a bummer, but I'm glad I looked!

This has been the subject of much discussion... Apparently, the end product has no detectable levels of gluten, even though if you go back, there's an ingredient that had gluten once upon a time. MOST people don't react to non-contaminated McD's fries, although I think there are a few who do.

We've only had a problem with them once-- the biggest problem that most people have with McD's fries is that they can be cross contaminated (CC'd) if an employee throws chicken nuggets in with the fries. Once nuggets have hit that oil, the whole batch of oil is contaminated. Gluten can't be killed with heat, like a germ.

I suppose, either way you look at it, it's a judgement call.

[Lainey]

Julie here...thanks so much to all that have gave me suggestions to the foods that my daughter might eat.

I need to answer a few questions and then I have a few more to ask.

First...my daughter was in the 5% for her weight since birth and about the 75% for height. She had lost 7oz and the Dr tried to get us to give her a more fatty diet to get some pounds on her. We tried. She regained her weight but the Dr still felt that she should weigh more. She is now in the 7% for weight and 38 for height. I thought that she was just petite. I am only 5'1". So the Dr decided to run some tests and a bladder kidney sonogram. She wanted to rull out certain things. We had taken her to have some blood drawn and then we got the news. We seen Dr Fishbein in Chicago and he feels from the blood test that she has celiac disease. But will do the scope to see whats going on in there.

I also forgot to ask the Dr....if my little girl has children...are they going to have this too?

I know...just let her be a kid for now!! Just wondering.

She doesnt like alot of foods....but all of her favorites are the things she shouldnt have and she has no problems or symptoms. So I am crossing fingers and toes and even eyes that the scope will come out normal, but I am getting prepared for going gluten free.

I looked at the Gerber Chicken sticks and they say they contain whey protein concentrate (from milk)????? IS this okay to eat or not. I thought that whey was an enemy too.

Also on the Kraft American Singles is says that it contains whey and whey protein. ???? This is forbidden too right???

I appreciate all help and advice here. I am still learning how to use this board too... forgive me for making any posts with no content.

Does anyone have a favorite gummy vitamin for my 2 yr old???

Thanks so much!! I have a million questions....just dont know where to start.

[Eriella]

Remember little bo peep with her curds and whey? Whey is a by product of milk in when making cheese, is it is gluten free. The easiest way to remember it is by the nursery rhyme.

Whey has the sugar lactose which most celiacs cannot digest in the first few months because when a celiac eats gluten, these little finger-like objects, called villi, are rubbed down to stubs. This is a problem, because the end of the villi produce lactase, the enzyme which digests the sugar, lactose, found in milk. If the whey is cooked, then the sugar should break down and it should be safe, but it is better not to risk it for the first few months.

Some celiacs will never be able to digest milk because they also cannot digest the protein found in milk, casein. It is complicated, but it gets easier. You will find that you will slowly learn more than the doctors about this.

Some other kid friend foods are:

swedish fish

m&ms

tostidos

cheese sticks

a lot of fruit snacks

apple sauce

As far as healthy food-- a lot of it is in the presentation. Chicken cut up into little bites with dipping sauce is more fun than plan chicken. And rice is always boring, but rice pasta is less so.

If you have any questions, let me know!

[Juliet]

"I also forgot to ask the Dr....if my little girl has children...are they going to have this too?"

There's no guarantee either way her kids will have the gene. First off, in this location, she has a pair of genes. Since it looks like she has celiac disease, that means most likely she has at least one gene that predisposes her to Celiac Disease that either you or your husband gave to her. The other gene may or may not also be a Celiac gene. She will give one copy of one of her genes to her children; it could be the one that is predisposed to Celiac Disease or it could be another one (which we do not yet know if it, too, is a Celiac gene or not at this time). To find out what genes she has exactly, you'd need to do a gene test. And even if she does give a Celiac gene to her children, there's no guarantee her children will get the disease. 30-40% of the population has one of the genes which predisposes them to Celiac Disease; only about 1% gets the disease. However, this being said, it does seem to run in families a little more but direct linkage has not been evaluated yet.

"So I am crossing fingers and toes and even eyes that the scope will come out normal, but I am getting prepared for going gluten free."

I hate to break this to you, but even if the scope comes back normal, it doesn't mean she doesn't have Celiac Disease. It actually only means they didn't find any damaged spots in the exact locations where they took biopsies. Damage from this disease, unless it's been going undetected for years and the damage severe, is often compared to buckshot: it randomly occurs in different spots and it's not something that can regularly be seen by the naked eye. So normally several biopsies need to be taken during the endoscopy and hopefully they find a damaged spot, because if they don't, and she does have the disease, especially because she has no outward visible symptoms, the damage can become pretty severe. Bone density problems is a real issue for children who have gone undiagnosed for years, and other autoimmune diseases, including Type I diabetes, rheumatoid arthritis, even alopecia, can start rearing their very ugly heads. So you may still want to consider going gluten free and see if maybe other issues which you're not even aware of yet clear up.

"Does anyone have a favorite gummy vitamin for my 2 yr old???"

Gummy Vites, Open Original Shared Link

Although the facility also produces wheat, it's on separate equipment. My son has never had a problem with them.

[shan]

Hi ya! i was in the same boat as you this time last year (actually 10 months ago!) My dd ONLY ate cheerios and pasta and bread (chocolate also ) Between the blood tests and the biopsy, i cried - and that was for about 6 weeks!! Then i started looking at he prices for gluten free stuff and i cried again!! 10 months on, she actually asks me for fruit (not yet there with the veggies ) and she loves potatoes, rice, chicken - alot of naturally gluten free stuff. I very rarely buy special fluten free stuff... Actually, i buy a pack of pancake mix, make a whole batch and take out as needed, i buy crackers and pretzels. I am a horrible mom and never give her pizza and stuff like that. She is little and that oldest in the family, so basically, if we go out to eat, i give her supper before we go and then she gets her own bottle of juice - a big treat!!!

I don't know if anyone else had this but at the beginning, she couldn't get enough to eat - she was STARVING!!! she ate nonstop for 3 months and then slowed down...

At such a young age they forget the taste of gluten stuff. at the beginning she really wanted bread and we tried all different ones and she hated them all. now if i would try them, she would LOVE them... but now i don't have the drive anymore!!

good luck!!!

[loco-ladi]

I am not a parent my only contribution here is I am a very picky eater and have been all my life

that being said...

pizza for starters anyways try the "cause your special" brand pizza crust so far its the one easiest to make and tastes most like what I am used to...

Brownies again I go with the cause your special brand taste better than what I had been used to

lunch meats etc I use hormel brand its mostly all marked gluten-free and tastes pretty good to

Pretzels I use glutino

Pasta this will be a tough one but so far tinkyada is the closest to what I was used to, but I have to make sure to use sauce as the straight just doesn't have the "oomph" I like

Cookies and Cakes again is a rough one but cause your special has mixes that are good and dont tend to crumble into nothingness when you blink at them.

Bread Man just forget bread for a while as hopefully the memory will fade enough to be able to tolerate it, lol I have not yet found a location for Kininikkinik (spelling) and every one I have tried so far has landed in the trash

[Carter's mom]

This has been the subject of much discussion... Apparently, the end product has no detectable levels of gluten, even though if you go back, there's an ingredient that had gluten once upon a time. MOST people don't react to non-contaminated McD's fries, although I think there are a few who do.

We've only had a problem with them once-- the biggest problem that most people have with McD's fries is that they can be cross contaminated (CC'd) if an employee throws chicken nuggets in with the fries. Once nuggets have hit that oil, the whole batch of oil is contaminated. Gluten can't be killed with heat, like a germ.

I suppose, either way you look at it, it's a judgement call.

Thank you all for the information on McD's. I saw the link that was posted and was really afriad once I saw the beef stock had wheat! I always feel like I'm being duped when I see things like that after I've been told it's gluten free. I don't want to poison my child. I guess it is a judgement call, I don't know what to do at this point. I'll have to do some research into our local McD's.

Thanks.

[jen2be2]

Hi Julie,

I was you exactly one year ago. My youngest DD, who was 18 months at the time was suffering from FTT(failure to thrive). She had severe reflux, chronic diareah and a tummy bloat that you would not believe. She was 18 lbs and loosing weight fast. She was dying and we did not know why. We finally found a GI that was able to tell us that she most likely had celiac disease. Her blood IgA came back at 165. When they did the scope, she had villi atrophy. We were devistated.

Since we found out that it was genetic, we had all of our children tested. As it turned out, our 2nd DD also had it. We were shocked because she appeared so healthy. Her IgA came back at 216. All she had ever complained about was tummy pain( but that was always before dinner and we thought she was just hungry) and leg pain, which we thought was just growing pains~ she is 5.

Our two other children had - blood work, but we chose to have the genetic testing done on both of them from Kimball Genetics( it is important to keep in mind that a) if you are a carrier, you can go active at any point in your life and 20% of people who have celiac disease will test - on blood work, but in fact intestional damage is still being done.) We wanted to know for sure if all of our kids were carrieres or not. We did not want to keep on poking them or restricting their diet if we did not need to.

I am so glad that we did. We found out that our oldest DD is not a carrier, but or son is. And we also found out by both of their genetic tests that both DH and I are carriers.

The genetic testing is a little expensive, but it was well worth it for us. Kimball's staff was just wonderful to work with and they do give a multi-test discount. We were able to do it by cheeck cell samples, which made life so much easier. And we got the results back within 3 business days. I would highly recommend this for your family, so you know who exactly to look out for.

It has been almost a year now that we have been on a gluten-free diet and we have seen many improvements. Jiselle's IgA dropped to 0 in April and Shaylin's just got there this past week.

It is amazing how different the kids are off Gluten. Jiselle has become more healthy looking and more outgoing, Shaylin is just a ball of wonderful energy and Hayden has had major behavioral improvements since going on the gluten-free diet.

In fact, when we were doing his gluten challenge this year, he reverted back to his old self on gluten, and as his speech therapist says, he was acting as if he had a severe case of ADHD( which we do suspect, but on a gluten-free diet it is more toned down). So we know that Gluten does effect not only your intestines, but behavior as well.

We are still dealing with the fact that Jiselle does have low bone density and we are trying to find out what is causing her chronic leg pain. Shaylin also appears to have food allergies~ esp. to corn, which we will find more out about in Jan., but we are in such a better position than we were last year.

I suggest getting "wheat free, worry free" by Dana Korn. She is the "expert" on celiac disease and the book explains celiac disease well, and how it is different than a food allergy or wheat/gluten intolerance. It also gives some basic pointers how to read food labels and to set up a gluten free kitchen. She also covers cross contamination.

I would also recommend the "Incredible Gluten Free Food for kids" cook book. We have tried a lot of the recipes in it and we have found them to be wonderful!

If you like to travel with the kids, you should know that Sea World, Lego Land and Disney Theme Parks do have Gluten Free options at the parks.

This site also offers what I consider to be invalueable. The Gluten Free food list and Rx list. You have to pay for it, but they have done so much of the research for you. They have checked many different name brand foods and products to see if they contain gluten or not. I take it to the store with me( downloaded into my Palm) and I can see if something is gluten-free or not. I also like the RX one as I can take it with me when my kids are sick and I can see what medications are gluten-free. Now it does not have everything on the list, but it does cover a lot. They also do updates over the year, so the list keeps on getting longer.

Oh, and if you spend over 7% of your annual income on medical bills( like we do), you should be able to count off the difference between the regular and gluten free food cost for her, as long as you get a RX from your Dr. stating that a gluten free diet is prescribed for your child. Just verify that with your tax accountant.

Whole foods and Henrys has a great selection of gluten-free foods, and they have some even labeled gluten-free on the shelves, which is very nice. Henry's even has gluten-free chicken fingers and fish stick fingers. I just forget the name of the maker. They are in the fozen food section.

Now to the kid friendly foods~ please note that most gluten-free foods has a very different texture and will take a while to adjust.

Annie's gluten-free Mac and Cheese

Hebrew National Hot Dogs

Heinz Katchup and Frenches Mustard are gluten-free

Chebe bread( it comes as a mix. They have pizza, regular , italian herb and cheese. Very easy to make).

Tinkeada pastas are great

Lundburg rice

Envirokids Koloa Krisp rice bars( chocolate)

Envirokids Panda rice bars( peanut butter)

Glutino Pretzels ( highly $$$, but good)

I hope this helps you start out....

ETA~ To answer your other question, it is very possible for any other of your children to be carriers and for your children to pass on the Celiac Gene.

Here is my family genetic info as an example.

DH= DQ2 strain. One normal gene in both the alpha and beta,the other gene is a carrier in the beta section only.

Me=DQ2 strain. One normal gene in both the alpha and beta, the other gene is a carrier in both the alpha and beta.

DD#1= she has 2 normal DQ2 genes and is not a carrier.

DD#2= Has Celiac Disease

DS= the first gene is a carrier in the beta section of the DQ2 strain and the second gene is a carrier in both the alpha and beta of the gene. Currently does not have active Celiac Disease.

DD#3- Has Celiac Disease.

As you can see 3 out of 4 of our kids have the gene for Celiac.And due to both DH and My genetic make up, we have a 75% chance of passing the celiac disease gene on to any of our children. Serena will not be able to pass it on as she is not a carrier, but Jiselle and Shaylin have a chance( we do not know how high as we did not do the genetic testing on them since we already knew they were +) and Hayden will for sure pass on the celiac disease gene to any of his children.

Since your DD has celiac disease, she at least has one celiac disease gene. The only way to know what her chances are of passing it to her children is to have her tested. When the time comes, she and her DH should have genetic testing prior to having children to know what chance they have of passing this on to their children or they can just test each child after they are born to see if they are carriers.

[Carter's mom]

Hi Julie,

I was you exactly one year ago. My youngest DD, who was 18 months at the time was suffering from FTT(failure to thrive). She had severe reflux, chronic diareah and a tummy bloat that you would not believe. She was 18 lbs and loosing weight fast. She was dying and we did not know why. We finally found a GI that was able to tell us that she most likely had celiac disease. Her blood IgA came back at 165. When they did the scope, she had villi atrophy. We were devistated.

Since we found out that it was genetic, we had all of our children tested. As it turned out, our 2nd DD also had it. We were shocked because she appeared so healthy. Her IgA came back at 216. All she had ever complained about was tummy pain( but that was always before dinner and we thought she was just hungry) and leg pain, which we thought was just growing pains~ she is 5.

Our two other children had - blood work, but we chose to have the genetic testing done on both of them from Kimball Genetics( it is important to keep in mind that a) if you are a carrier, you can go active at any point in your life and 20% of people who have celiac disease will test - on blood work, but in fact intestional damage is still being done.) We wanted to know for sure if all of our kids were carrieres or not. We did not want to keep on poking them or restricting their diet if we did not need to.

I am so glad that we did. We found out that our oldest DD is not a carrier, but or son is. And we also found out by both of their genetic tests that both DH and I are carriers.

The genetic testing is a little expensive, but it was well worth it for us. Kimball's staff was just wonderful to work with and they do give a multi-test discount. We were able to do it by cheeck cell samples, which made life so much easier. And we got the results back within 3 business days. I would highly recommend this for your family, so you know who exactly to look out for.

It has been almost a year now that we have been on a gluten-free diet and we have seen many improvements. Jiselle's IgA dropped to 0 in April and Shaylin's just got there this past week.

It is amazing how different the kids are off Gluten. Jiselle has become more healthy looking and more outgoing, Shaylin is just a ball of wonderful energy and Hayden has had major behavioral improvements since going on the gluten-free diet.

In fact, when we were doing his gluten challenge this year, he reverted back to his old self on gluten, and as his speech therapist says, he was acting as if he had a severe case of ADHD( which we do suspect, but on a gluten-free diet it is more toned down). So we know that Gluten does effect not only your intestines, but behavior as well.

We are still dealing with the fact that Jiselle does have low bone density and we are trying to find out what is causing her chronic leg pain. Shaylin also appears to have food allergies~ esp. to corn, which we will find more out about in Jan., but we are in such a better position than we were last year.

I suggest getting "wheat free, worry free" by Dana Korn. She is the "expert" on celiac disease and the book explains celiac disease well, and how it is different than a food allergy or wheat/gluten intolerance. It also gives some basic pointers how to read food labels and to set up a gluten free kitchen. She also covers cross contamination.

I would also recommend the "Incredible Gluten Free Food for kids" cook book. We have tried a lot of the recipes in it and we have found them to be wonderful!

If you like to travel with the kids, you should know that Sea World, Lego Land and Disney Theme Parks do have Gluten Free options at the parks.

This site also offers what I consider to be invalueable. The Gluten Free food list and Rx list. You have to pay for it, but they have done so much of the research for you. They have checked many different name brand foods and products to see if they contain gluten or not. I take it to the store with me( downloaded into my Palm) and I can see if something is gluten-free or not. I also like the RX one as I can take it with me when my kids are sick and I can see what medications are gluten-free. Now it does not have everything on the list, but it does cover a lot. They also do updates over the year, so the list keeps on getting longer.

Oh, and if you spend over 7% of your annual income on medical bills( like we do), you should be able to count off the difference between the regular and gluten free food cost for her, as long as you get a RX from your Dr. stating that a gluten free diet is prescribed for your child. Just verify that with your tax accountant.

Whole foods and Henrys has a great selection of gluten-free foods, and they have some even labeled gluten-free on the shelves, which is very nice. Henry's even has gluten-free chicken fingers and fish stick fingers. I just forget the name of the maker. They are in the fozen food section.

Now to the kid friendly foods~ please note that most gluten-free foods has a very different texture and will take a while to adjust.

Annie's gluten-free Mac and Cheese

Hebrew National Hot Dogs

Heinz Katchup and Frenches Mustard are gluten-free

Chebe bread( it comes as a mix. They have pizza, regular , italian herb and cheese. Very easy to make).

Tinkeada pastas are great

Lundburg rice

Envirokids Koloa Krisp rice bars( chocolate)

Envirokids Panda rice bars( peanut butter)

Glutino Pretzels ( highly $$$, but good)

I hope this helps you start out....

ETA~ To answer your other question, it is very possible for any other of your children to be carriers and for your children to pass on the Celiac Gene.

Here is my family genetic info as an example.

DH= DQ2 strain. One normal gene in both the alpha and beta,the other gene is a carrier in the beta section only.

Me=DQ2 strain. One normal gene in both the alpha and beta, the other gene is a carrier in both the alpha and beta.

DD#1= she has 2 normal DQ2 genes and is not a carrier.

DD#2= Has Celiac Disease

DS= the first gene is a carrier in the beta section of the DQ2 strain and the second gene is a carrier in both the alpha and beta of the gene. Currently does not have active Celiac Disease.

DD#3- Has Celiac Disease.

As you can see 3 out of 4 of our kids have the gene for Celiac.And due to both DH and My genetic make up, we have a 75% chance of passing the celiac disease gene on to any of our children. Serena will not be able to pass it on as she is not a carrier, but Jiselle and Shaylin have a chance( we do not know how high as we did not do the genetic testing on them since we already knew they were +) and Hayden will for sure pass on the celiac disease gene to any of his children.

Since your DD has celiac disease, she at least has one celiac disease gene. The only way to know what her chances are of passing it to her children is to have her tested. When the time comes, she and her DH should have genetic testing prior to having children to know what chance they have of passing this on to their children or they can just test each child after they are born to see if they are carriers.

Wow! That was a lot of useful information and really pieaks my interest into the genetic testing. My son has Celiac's but my daughter has never been tested. We assume since my grandfather was diagnosed as being a Celiac at the age of 80 yrs old that the gene comes from my side of the family. Can you share the costs of genetic testing? Do you have to give the information to your health insurance company and if so does it make your rates go up?

Thanks for all the information.