My Son Has Celiac Disease Need Advice

[GOOFY4DONALD]

I just found out that my DS9 needs to be on a gluten free diet. The doctor let me know of many foods he can eat and I realized that this dr has no idea what a 9yo will eat. I know that many of the foods my son loves needs to be substituted. I thought that maybe some of you with real life experience can give me suggestions on what he can continue eating, what has a gluten free substitute and what must be elimintaed. Here is a list on pretty much the only things he will eat. Thanks in advance for all of your help.

1. fresh fruits and veggies
2. yogurt
3. cheese (cheddar, cottage, and string only)
4. pb&j (will get gluten free bread)
5. mac & cheese
6. rice and soy sauce
7. juices, including capri sun
8. occassional soda (sprite)
9. happy meal chicken nuggets and fries (this may have to go out the window)
10. ice cream

Any help would be appreciated

 

[Traveliz]

I just found out that my DS9 needs to be on a gluten free diet. The doctor let me know of many foods he can eat and I realized that this dr has no idea what a 9yo will eat. I know that many of the foods my son loves needs to be substituted. I thought that maybe some of you with real life experience can give me suggestions on what he can continue eating, what has a gluten free substitute and what must be elimintaed. Here is a list on pretty much the only things he will eat. Thanks in advance for all of your help.

1. fresh fruits and veggies
2. yogurt
3. cheese (cheddar, cottage, and string only)
4. pb&j (will get gluten free bread)
5. mac & cheese
6. rice and soy sauce
7. juices, including capri sun
8. occassional soda (sprite)
9. happy meal chicken nuggets and fries (this may have to go out the window)
10. ice cream

Any help would be appreciated

1,2,3,4 (with gluten free bread) should all be fine (yogurt no crunchies)
Mac & cheese homemade with gluten free pasta no problem
rice is a mainstay on a gluten free diet so you are good there
there is gluten free soy sauce (my husband carries it with him)
soda no problem
chicken nuggets (there are gluten free chicken nuggets in the frozen food health section
fries (home made, store bought no problem (just check labels)...when eating out may be a problem
ice cream plain without gluten products again no problem.

My husband has had celiac's for almost 30 years now...he is also lactose free (which would make your list considerably more difficult). Just start reading labels and get online with the actual manufacturers.

Liz

 

[GOOFY4DONALD]

1,2,3,4 (with gluten free bread) should all be fine (yogurt no crunchies)
Mac & cheese homemade with gluten free pasta no problem
rice is a mainstay on a gluten free diet so you are good there
there is gluten free soy sauce (my husband carries it with him)
soda no problem
chicken nuggets (there are gluten free chicken nuggets in the frozen food health section
fries (home made, store bought no problem (just check labels)...when eating out may be a problem
ice cream plain without gluten products again no problem.

My husband has had celiac's for almost 30 years now...he is also lactose free (which would make your list considerably more difficult). Just start reading labels and get online with the actual manufacturers.

Liz

Thank you for the reply. I forgot to add a couple more items...chips and waffles w/ maple syrup...any hope. I also just read that Sonic has gluten free fries and tots...his favorite.

 

[leebee]

Plain potato chips should be OK, but the flavored ones are out; the flavoring is "glued" onto the chip with a gluten wash. You'll need to get gluten free waffles, or make them yourself.

A close friend's children have both been diagnosed with celiac in the past 6 months, so she's done LOTS of research. You have to be careful to read all the labels, because there's gluten in tons of places. For example, although mac and cheese can be made with rice or corn pasta, be careful about the cheese part as there's often flour used to thicken the cheese sauce. Gotta watch out for light soups, too... gluten is used as a thickener in these. Also, my friend has found that her son needs to have all separate cookware used for his food, as gluten is pretty sticky and will stick to frying pans, pots, etc., even though you wash them carefully. She has purchased dedicated cookware for her son. Her daughter has slightly elevated enzymes but no villi damage, so they are being cautious with her diet (gf at home, not as worried about outside meals).

Read, read, read... labels, articles, nutrition reports. Educate yourself! ANYTHING with gluten must go, so that means anything with wheat flour of any kind, rye, or barley. Stuff made with corn, rice, or potatoes should be ok, but if they have any gluten at all (in seasonings, flavors, thickeners, sauces, etc.) he cannot have them. You might need to be aware of places where gluten free foods are prepped on universally used grills, toasters, cookware, etc. Good luck... it can be done.

 

[seven dwarfs]

I just want to add to be careful when going gluten free. People tend to buy lots of gluten free products. (I did this) There are some new studies that show corn and brown rice are also a problem for some people with gluten problems.

My son got better for 6 months. Slowly he started getting sick again. It has been a long road for us. I read some of the studies about the protein in these items and thought I have nothing to lose. Since removing these items from his diet (and still removing the grains/oats etc), he is a changed person. He is no longer sick. He sleeps better. No belly pain and no more head aches. His ADHD is 100% better.

It is very hard to figure out what to eat at first. It seems hard because our society is all about packaged foods, pasta, pizza and cake! He eats fruits, veggies, potatoes, meats that are not pre seasoned (we do that at home), nuts (no peanuts) and eggs. He can have almond flour and cocnut flour. There are a ton of ideas on websites.....Gluten can hide in flavors and thickeners so just try to read and if you are questioning a product call the company.

Good luck to you!

 

[GOOFY4DONALD]

Thanks for all the replies so far. I found some of his favorite foods are already gluten free so that's good. I think I will start a food diary for him so I will be able to tell what is working and what isn't

 

[mjkacmom]

You might want to meet with a nutritionist. When my dd was diagnosed, I had already tried a gf diet myself, so I was way ahead of the game. Gluten is hidden in so many foods (twizzlers, doritos, gummy vitamins). Most gf bread need to be toasted in order to be edible. For me, the hardest part is sending lunch. She gets rice a lot, yogurt, cheese and rice crackers, smoothies, and salad.

The gf substitutions do taste different, but dd9 claims she didn't like it at first, but loves it now. It's super expensive! My dd isn't bothered by cross contamination (we do use separate knives, and she won't eat a salad if the croutons need to be removed, but we only have one toaster).

It's hard, at first, but then it gets easier.

 

[Sorsha]

My best friend had to go gluten-free a year ago, and I have traveled her journey with her.

The best advice I can give you:

1) Read Labels!! This is the MOST important thing, gluten can hide in SO many processed foods. Recently, though, it has become such a hot button issue, that most gluten-free foods are clearly labeled as such, in order to catch shopper's eyes; so its pretty easy to find them. Most mega-marts have a health food section, and its quite easy to find GF products there.

2) There are many subsitutes commercially available. GF chicken nuggets, rice pastas, GF flours (for making desserts, thickening sauces, etc) GF cold cereals, etc. Just shop carefully. For mac and cheese, a company called "Annie's Naturals" makes a GF boxed mac and cheese that's similar to Kraft.

3) Sadly McD chicken nuggets will have to go away; they are coated in a gluten-containing breading. The fries are technically OK, but since they may share fryer space with the nuggets, cross-contamination is an all-too-real possibility. Watch fries you buy at the grocery store for home prep too. Most "shoestring", hashbrowns, etc are OK, but fries that are coated at all (seasoned, battered, "crispers", etc) will probably have gluten.

4) Cross-contamination is SO hard to avoid when eating out. My friend will order a salad, and tell the server specifically "No croutons, I CANNOT have wheat products". The server thinks its OK to take a pre-plated salad and pick off the croutons. Unfortunately the crouton "dust" remains unseen, and my friend ends up sick from it. Also, even food that are gluten-free can pick up particles of wheat based products just from surfaces or utensils in a kitchen. Some people will be OK with tiny amounts; some people, like my friend, get terribly ill with just miniscule bits.

5) As a PP said, you can get GF soy sauce, I saw it at a grocery store just yesterday.

6) Mostly, just 2 things. Read, read, read labels. And learn to cook EVERYTHING from scratch. For mac and cheese, for instance, use a gluten free macaroni (rice based). Make a simple cheese sauce by melting 4 tbsp of butter then making a roux by adding 4 tbsp of potato flour or other GF flour. Add 3-4 cups of milk and cook until it thickens. Dump a bunch of grated cheese in, stir until it melts, season with S&P. Mix with the cooked macaroni, put it in a baking dish, top with more cheese, and pop it in the oven till the cheese browns. It tastes MUCH better than the boxed stuff anyway!

It will be hard at first, and its a life-altering change, but he's young, and he'll adjust quickly.

 

[mjkacmom]

My best friend had to go gluten-free a year ago, and I have traveled her journey with her.

The best advice I can give you:

1) Read Labels!! This is the MOST important thing, gluten can hide in SO many processed foods. Recently, though, it has become such a hot button issue, that most gluten-free foods are clearly labeled as such, in order to catch shopper's eyes; so its pretty easy to find them. Most mega-marts have a health food section, and its quite easy to find GF products there.

2) There are many subsitutes commercially available. GF chicken nuggets, rice pastas, GF flours (for making desserts, thickening sauces, etc) GF cold cereals, etc. Just shop carefully. For mac and cheese, a company called "Annie's Naturals" makes a GF boxed mac and cheese that's similar to Kraft.

3) Sadly McD chicken nuggets will have to go away; they are coated in a gluten-containing breading. The fries are technically OK, but since they may share fryer space with the nuggets, cross-contamination is an all-too-real possibility. Watch fries you buy at the grocery store for home prep too. Most "shoestring", hashbrowns, etc are OK, but fries that are coated at all (seasoned, battered, "crispers", etc) will probably have gluten.

4) Cross-contamination is SO hard to avoid when eating out. My friend will order a salad, and tell the server specifically "No croutons, I CANNOT have wheat products". The server thinks its OK to take a pre-plated salad and pick off the croutons. Unfortunately the crouton "dust" remains unseen, and my friend ends up sick from it. Also, even food that are gluten-free can pick up particles of wheat based products just from surfaces or utensils in a kitchen. Some people will be OK with tiny amounts; some people, like my friend, get terribly ill with just miniscule bits.

5) As a PP said, you can get GF soy sauce, I saw it at a grocery store just yesterday.

6) Mostly, just 2 things. Read, read, read labels. And learn to cook EVERYTHING from scratch. For mac and cheese, for instance, use a gluten free macaroni (rice based). Make a simple cheese sauce by melting 4 tbsp of butter then making a roux by adding 4 tbsp of potato flour or other GF flour. Add 3-4 cups of milk and cook until it thickens. Dump a bunch of grated cheese in, stir until it melts, season with S&P. Mix with the cooked macaroni, put it in a baking dish, top with more cheese, and pop it in the oven till the cheese browns. It tastes MUCH better than the boxed stuff anyway!

It will be hard at first, and its a life-altering change, but he's young, and he'll adjust quickly.

You can also use gf corn starch for a lot of flour substitions.

 

[3prettyprincesses]

Sorry to hear about your son, it's such a life changing diet and can seem overwhelming at the beginning.

Yogurt wise, Fage and Chobani are both gluten free. Yoplait is as well but obviously any cookie, crunchy topping is out.

Cabot cheddar is gluten free and delicious. We put it on everything, my kids love it. Daisy cottage cheese is also gluten free. Polly-O string cheese is considered gluten free but it does have vinegar which can irritate a healing celiac's intestinal wall. Frigo Cheese Heads string cheese is gluten free.

Peanut butter is a bit harder, at least it was for me. I go to Whole Foods and get theirs. Jelly is another one I've had trouble with, would you believe I've actually seen jars with wheat in it? Crazy.

Annie's makes a rice macaroni and cheese that my kids adore. I believe Target sells it.

Mahatma rice is gluten free, it's just the regular long grain white rice. Soy sauce is another of those stupid "why would they put wheat in" products. We use San-J, it's really delicious and tastes better than the regular.

Mott's Apple juice and Juicy Juice are gluten free.

Soda is a bit of a toughie. Coke says that their products are considered gluten free because the gluten levels fall below a certain percentage. However, if I have more than one, I have bathroom issues. The only soda I've been drinking is either Hansen's or Izze. They are both very good, I have to fight my kids for them.

Fast food is hard, there's such a high chance of cross contamination. I don't eat it at all. But if you're looking for chicken nuggets to make at home, Applegate Farms makes some and they're good! Ore Ida makes some gluten free fries too, it's been awhile since I've bought any though.

Ah, ice cream. I've been eating Breyer's vanilla or coffee. They are a very good company about labeling for gluten too. The obvious flavors would be out like cookie dough, brownie, etc. Another good brand is Talenti, they actually say gluten free on the label.

Good luck to you and your son. I know how overwhelming this can be but you're doing the best thing for your son. Like the other posters have said, read those labels carefully. Trying to eat as man whole foods as possible will be good for him too. When I initially went GF, I ate very simple foods in order to give my intestines a chance to kind of calm down. I realize this will be hard to do with a nine year old though. Hang in there.

Oh and for eating out, PF Chang's is absolutely amazing for gluten free dining. It's pretty much the only restaurant I'll eat at after having been glutened by several other ones. They are very meticulous about cross contamination and the GF food comes out on special plates that have the PF Chang's logo. At our PF Chang's, there's a little boy with severe leukemia who has to be so careful about germs and such. When he eats here, he's treated so well and his food is handled with extreme caution.

 

[Bilberry]

That's nice that the doctor was able to catch the condition early on. From what I've read, most will not realize they are gluten sensitive or celiac till much later in life. That was the case with me.

A web sight that can be of help is Wheatbelly. It's is about the positive health benefits of eating wheat free, and also has listings for recipes. Good luck!

http://www.wheatbellyblog.com/

 

[JoiseyMom]

Elisabeth Hasselbeck has serveral gluten free cookbooks out. You can get them from the library or amazon. Good luck.

Oh, pizzerias by me all have gluten free pizza. So that is something if he likes pizza.

 

[Sandy321]

Elisabeth Hasselbeck has serveral gluten free cookbooks out. You can get them from the library or amazon. Good luck.

Oh, pizzerias by me all have gluten free pizza. So that is something if he likes pizza.

I was impressed when she talked about how she wrote this book, how much research and personally trying all the recipes for her new book - it is on Amazon
http://www.amazon.com/Deliciously-G...=sr_1_1?s=books&ie=UTF8&qid=1329429754&sr=1-1

Do go to the Amazon link for the book - click on the book to see a sample of it - she describes some of the things one might not think of when setting up a g-free environment.

I also got a free pdf (beautifully done!) book from Pulses Canada (gluten free recipes included - it easily downloads to your computer no hassle )
http://www.pulsecanada.com/pulses-and-the-gluten-free-diet

(someone tried to claim it their own and put it up on Amazon for Kindle - really good recipes imho)

 

[fimac]

Ds was 8 when he was diagnosed, he should have been diagnosed at 1.
If you look on the celiac sites you will find a letter to give to the school to help him transition.
Lays stax are made on a dedicated line so are a good place to start with chips.
Udi's bread is not to bad, but the gluten free bread can be a very big step for a kid. Will he eat peanut butter and crackers ? There are some very good crackers about.
Keep at some candy or other treats on you for times you find that he will be left out of kids treats/parties.

If you are on Facebook you might find local celiac groups. I find that word gets spread when things are on sale. Always good with gluten free food.
There are a couple of kids books about being gluten free.
Good luck

 

[clh2]

Elisabeth Hasselbeck has serveral gluten free cookbooks out. You can get them from the library or amazon. Good luck.

Oh, pizzerias by me all have gluten free pizza. So that is something if he likes pizza.

I know someone who works at a pizzeria, and a family goes to that restaurant often - and brings a gluten free crust with them - that the restaurant uses to make the GF pizza. The family has been doing this for years at this place, so it isn't a big deal (i.e. no worries about getting any flour on it or flour in the other ingredients.)

 

[dreamn_Disney]

I have found Celiac.com to be very helpful. I also will call the toll free number on many products to double check if they are gluten free. I make a lot of my own treats and even have started to sell them around here. Kids like to have treats and it is great when they come to an event around here and can buy a cookie, cake pop, or chocolate covered goodie. Look up some recipes for gluten free treats and try out some recipes.

I live in a small town and it can be hard to find premade items. I have found a pretty good frozen waffle, Van's, but like the ones I make homemade even better. My mom uses instant potato flakes to bread items for me. I love breaded pork chops and they are just as good as when she used flour. She also has started using the mashed potatoes to thicken gravy for us. I was surprised when she told me that was all she was doing to thicken.

 

[GOOFY4DONALD]

I want to thank everyone so much for all of your help and advice. This is very overwhelming. I really hope this works. My son has been plagued with daily stomach aches almost daily vomiting and other stomach/bathroom ailments. He has also had chronic headaches and blister-like rashes. The doctor said that he needs to remove the gluten from his diet and we need to try it for a month and if it doesn't improve we need to go in for more testing. I went ahead and purchased some items to get him through the next couple of days. He had GF waffles tonight that he enjoyed very much. Well off for more research.

 

[dis-happy]

I've had to change my ds' diet drastically in the past week due to food allergies.

One helpful site is www.foodfacts.com

Also just rec'd an Amazon book that a disser recommended called Allergy Proof Recipes for Kids. It looks good.


The disABILITIES board has a lot of helpful threads too.

 

[shortbun]

If you are near a Whole Foods or Trader Joes, they both have several GF products and lots of things like rice flour, etc so you can bake if so inclined.
Read every label. Gluten will suprise you in some products. I remember being shocked about finding it in many candies.

 

[mjkacmom]

I want to thank everyone so much for all of your help and advice. This is very overwhelming. I really hope this works. My son has been plagued with daily stomach aches almost daily vomiting and other stomach/bathroom ailments. He has also had chronic headaches and blister-like rashes. The doctor said that he needs to remove the gluten from his diet and we need to try it for a month and if it doesn't improve we need to go in for more testing. I went ahead and purchased some items to get him through the next couple of days. He had GF waffles tonight that he enjoyed very much. Well off for more research.

Did he have a biopsy done? I'm hoping he did, and it's definitely celiac. My friend's dd was diagnosed with crohnes in kindergarten, and she recently had to be hospitalized, and is now on a therapy similar to chemo. I'll take dd's celiac any day over that.