All 3 Kids Diagnosed

ProudMommyDebbie · September 24, 2010

Hello to all.

I'm Debbie, 27, and my three children were just conformed with the diagnoses of Celiac Disease.

My son is in 3rd Grade, my Daughter in 1st, and my youngest daughter is about to turn 4 and go to pre school.

I am going to have to do a lot for my two in public school because Gluten Free is not in their vocabulary.

I am researching the disease and my kids already have a lactose allergy, so are on lactaid brand milk, but are said to still be ok to eat cheese, eggs, yogurt, and the lactose free milk.

I'm researching the types of breads and pastas, ect that I can still cook for them, just have different ingredients.

Nice to meet you all and talk to you soon.

ravenwoodglass · September 24, 2010

Welcome to the board. Make sure the both you and Dad get checked yourselves if you haven't already.

There are some good gluten free baked goods out there. Udi's, Kinnickinnick, and Grainless Baker come to mind first for ready made. Gluten Free Pantry makes some great mixes and Betty Crocker has come out with gluten free cakes, brownies and chocolate chip cookies. For pasta I usually get Thai Kitchens rice noodles and Tinkyada is another popular brand. If you live near a Wegmans they are a good place to shop as all their name brand gluten free stuff has a circle G on it.

Go with mostly whole unprocessed foods for a bit to give them the chance to heal. Since celiac damages the area that produces the enzyme that digests lactose many of us are lactose intolerant until we heal.

Do make sure to buy a new dedicated gluten-free toaster, replace any scratched or wooden utensils and watch out for gluten in stuff like playdoh, paints and glues etc.

Your children are covered under the ADA so don't let the school give you a hard time. Do make the teachers aware of their celiac diagnosis and make them aware that if they are doing any baking in class that is not something your kids can do safely. Provide a supply of safe gluten-free snacks also so if your school does things like let parents bring in cupcakes or cookies on special days your children will have something safe to eat.

ProudMommyDebbie · September 24, 2010

Thank-you for you reply and help!

My husband was born with spina bifida and hydrocephalus and had no major problems growing up, but in 2005 became very ill and had to have brain surgery to fix his shunt that had broken, which meant the fluid building up around his brain (hydrocephalus)was not being drained down from his head into his abdomen because the shunt had malfunctioned, and was causing major issues.

After the shunt revision and abdominal surgery he came home to recover Hurricane Ike hit Texas, and we had to evacuate due to his condition.

We came home three weeks later and our rental home had flooded, so we lost our home and only vehicle.

Moved into another rental home and took on a car note.

My husband broke out with severe psoriasis from the stress and recovery.

He later was diagnosed with Rheumatoid Arthritis and Lupus.

He's been unable to work since 2005, so I am a Spousal Caregiver, and mother to three kids.

The sole provider of income in our household and there is never enough money, this gluten free is going to be hard when the wholefood stores are so very high priced in Houston.

My husband is believed to have Celiac, but waiting confirmation, and we were told to have our kids tested.

They were tested the end of July and we received the results yesterday which confirmed they do have it.

My son is 8, and I have two daughters: ages 6 and almost 4.

I don't know how i will make this change, but it has to be done, and quickly.

My son has allergies, so takes Allegra, he has chronic bronchitis or lunch infections when the weather changes every year between Jan-April, and all this bring on allergy induced asthma.

He has an inhaler at home and at school, and he has a breathing machine at home along with the mouth piece and medicine at the school for the schools breathing machine.

His school is trying to label him with having Attention Deficit Disorder, after testing his IQ, Academic Achievement, and also re evaluating his speech.

HE tested in normal range for IQ and no learning disabilities on the academic testing, and he now tests too high for an IEP in speech.

Due to the below grade level test scores at the end of 2nd grade, where they said he was below in reading and writing, and the history of the teachers having to redirect him to pay attention and do his work, they now want to not look into any other avenues and just say it's ADD.

I know celiac can cause these issues, so I hope this will help my son succeed in school.

He is smart and loves to read, loves math and science, he just gets easily frustrated and thinks he can't do things that are hard.

My 6 yr old daughter has eczema that breaks out on the crease of her arms where you bend at the elbow, then it breaks out at the back of her knees, she has premature acne breakouts on her chin, but it's not noticeable unless you are really close to her.

My youngest daughter, as the other two are lactose intolerant, but not yet shown signs of auto immune problems or other health issues.

I contacted my children's school nurse, and she is contacting the districts dietitian.

The menu in public schools is very limited, so I will have to figure out what i can do to pack their lunch (they receive free breakfast and lunch at school because of our finances going to medical expenses and bills to not be homeless, so i barely make by with having extra for gas in the car for work commute and making sure there is enough food).

I have to stay strong for the kids and my family, but I am so tired of being stressed, and tired of being exhausted.

missy'smom · September 24, 2010

Welcome.

I'm no able to get a long post out now but My son has an ADHD dx and we've made alot of progress recently by carefully discovering and agressively treating his food and environmantal allergies. Allergy shots and eliminating foods from his diet that he tested pos. to have made a positive impact. He does have an IEP and that does help. No ADD meds for him. From my own person experience with gluten, it can play a big part too.

Lunchinabox.net is a great resource for ideas for packing kid's lunches and there is a forum with some GFers. Lots of archives here too.

Switching over to potato and rice based dishes instead of bread and pasta is more economical. Fruits, jello etc. instead of cookies and the like also more economical. The Rice Chex General Mills brand cereal is gluten-free.

As you get things figured out, decorate a shoe box and put the kid's names on them. Fill it with gluten-free individually packaged, shelf stable treats and have the teacher put in a safe place in the classroom. Then, when treats get sent in to the class that you are unaware of, kiddo can take a treat from his/her box. I always tried to include one chocolate treat like M+M's because choc. treats are sent in often. Fruit leathers and such are also good additions. Individual bags of chips. It won't be the same as the others but my kiddo didn't mind. I was always on the lookout when I was out shopping and would pick up this or that to add to the treat box stash.

Oh, I almost forgot to add that going gluten-free put my son's eczema into remission, in fact, that's a big reasn why he was initially taken gluten-free. Further allergy testing and dietary experiments has also revealed that beans can cause it to come back.

scarlett77 · September 24, 2010

Thank-you for you reply and help!

My husband was born with spina bifida and hydrocephalus and had no major problems growing up, but in 2005 became very ill and had to have brain surgery to fix his shunt that had broken, which meant the fluid building up around his brain (hydrocephalus)was not being drained down from his head into his abdomen because the shunt had malfunctioned, and was causing major issues.
After the shunt revision and abdominal surgery he came home to recover Hurricane Ike hit Texas, and we had to evacuate due to his condition.
We came home three weeks later and our rental home had flooded, so we lost our home and only vehicle.
Moved into another rental home and took on a car note.
My husband broke out with severe psoriasis from the stress and recovery.
He later was diagnosed with Rheumatoid Arthritis and Lupus.

He's been unable to work since 2005, so I am a Spousal Caregiver, and mother to three kids.
The sole provider of income in our household and there is never enough money, this gluten free is going to be hard when the wholefood stores are so very high priced in Houston.

My husband is believed to have Celiac, but waiting confirmation, and we were told to have our kids tested.
They were tested the end of July and we received the results yesterday which confirmed they do have it.

My son is 8, and I have two daughters: ages 6 and almost 4.
I don't know how i will make this change, but it has to be done, and quickly.
My son has allergies, so takes Allegra, he has chronic bronchitis or lunch infections when the weather changes every year between Jan-April, and all this bring on allergy induced asthma.
He has an inhaler at home and at school, and he has a breathing machine at home along with the mouth piece and medicine at the school for the schools breathing machine.

His school is trying to label him with having Attention Deficit Disorder, after testing his IQ, Academic Achievement, and also re evaluating his speech.
HE tested in normal range for IQ and no learning disabilities on the academic testing, and he now tests too high for an IEP in speech.
Due to the below grade level test scores at the end of 2nd grade, where they said he was below in reading and writing, and the history of the teachers having to redirect him to pay attention and do his work, they now want to not look into any other avenues and just say it's ADD.
I know celiac can cause these issues, so I hope this will help my son succeed in school.
He is smart and loves to read, loves math and science, he just gets easily frustrated and thinks he can't do things that are hard.

My 6 yr old daughter has eczema that breaks out on the crease of her arms where you bend at the elbow, then it breaks out at the back of her knees, she has premature acne breakouts on her chin, but it's not noticeable unless you are really close to her.
My youngest daughter, as the other two are lactose intolerant, but not yet shown signs of auto immune problems or other health issues.

I contacted my children's school nurse, and she is contacting the districts dietitian.
The menu in public schools is very limited, so I will have to figure out what i can do to pack their lunch (they receive free breakfast and lunch at school because of our finances going to medical expenses and bills to not be homeless, so i barely make by with having extra for gas in the car for work commute and making sure there is enough food).

I have to stay strong for the kids and my family, but I am so tired of being stressed, and tired of being exhausted.

Wow, you are such a great, strong, loving mama/wife! Give yourself a pat on the back. Missymom gave some great ideas. I would also advise to stick with naturally gluten-free foods instead of specialty ones if you can help it. Nachos is cheap and easy. Use Mission corn tortillas to make your own chips and ground beef, black or pinto beans, tomatoes or salsa, and some monterey jack. You can even do mexican rice too. Do pizza potatoes by taking bakes potatoes and cut them in half top with sauce, cheese, and pepperoni pair with salad or carrot sticks. Get some gluten-free soy sauce (try San-J Tamari) and stir fry some frozen veggies and beef or chicken or make some chicken or pork fried rice. Meat and veggie stews are usually filling and economical. I have also found that Chebe makes a mix that you can use to make things like "bagel" dogs, pizza, bread sticks, "flour" tortillas, and empanadas. I buy it online 8pkgs for $18.xx. The packages are kind of small so 2 packages will only make 4- 8" pizzas. It's not a $5 dinner, but it will feel a family of 5 for roughly $10-12...which is still cheaper than ordering Pizzahut. You can also buy pasta online in bulk...but even at bulk prices expect to pay $3-$4 per a bag. Also talk to your local whole foods store. They usually will offer you a discount if you buy in bulk or you can negotiate with them to bring something in for you. I know that Whole Foods will give you a 10% discount if you buy by the box rather than per item.

twe0708 · September 24, 2010

Thank-you for you reply and help!

My husband was born with spina bifida and hydrocephalus and had no major problems growing up, but in 2005 became very ill and had to have brain surgery to fix his shunt that had broken, which meant the fluid building up around his brain (hydrocephalus)was not being drained down from his head into his abdomen because the shunt had malfunctioned, and was causing major issues.
After the shunt revision and abdominal surgery he came home to recover Hurricane Ike hit Texas, and we had to evacuate due to his condition.
We came home three weeks later and our rental home had flooded, so we lost our home and only vehicle.
Moved into another rental home and took on a car note.
My husband broke out with severe psoriasis from the stress and recovery.
He later was diagnosed with Rheumatoid Arthritis and Lupus.

He's been unable to work since 2005, so I am a Spousal Caregiver, and mother to three kids.
The sole provider of income in our household and there is never enough money, this gluten free is going to be hard when the wholefood stores are so very high priced in Houston.

My husband is believed to have Celiac, but waiting confirmation, and we were told to have our kids tested.
They were tested the end of July and we received the results yesterday which confirmed they do have it.

My son is 8, and I have two daughters: ages 6 and almost 4.
I don't know how i will make this change, but it has to be done, and quickly.
My son has allergies, so takes Allegra, he has chronic bronchitis or lunch infections when the weather changes every year between Jan-April, and all this bring on allergy induced asthma.
He has an inhaler at home and at school, and he has a breathing machine at home along with the mouth piece and medicine at the school for the schools breathing machine.

His school is trying to label him with having Attention Deficit Disorder, after testing his IQ, Academic Achievement, and also re evaluating his speech.
HE tested in normal range for IQ and no learning disabilities on the academic testing, and he now tests too high for an IEP in speech.
Due to the below grade level test scores at the end of 2nd grade, where they said he was below in reading and writing, and the history of the teachers having to redirect him to pay attention and do his work, they now want to not look into any other avenues and just say it's ADD.
I know celiac can cause these issues, so I hope this will help my son succeed in school.
He is smart and loves to read, loves math and science, he just gets easily frustrated and thinks he can't do things that are hard.

My 6 yr old daughter has eczema that breaks out on the crease of her arms where you bend at the elbow, then it breaks out at the back of her knees, she has premature acne breakouts on her chin, but it's not noticeable unless you are really close to her.
My youngest daughter, as the other two are lactose intolerant, but not yet shown signs of auto immune problems or other health issues.

I contacted my children's school nurse, and she is contacting the districts dietitian.
The menu in public schools is very limited, so I will have to figure out what i can do to pack their lunch (they receive free breakfast and lunch at school because of our finances going to medical expenses and bills to not be homeless, so i barely make by with having extra for gas in the car for work commute and making sure there is enough food).

I have to stay strong for the kids and my family, but I am so tired of being stressed, and tired of being exhausted.

A couple of items I have found that my kids like are the Betty Crocker Gluten free cake mix and Quinoa Macaroni (not sure if they are called Macaroni but they are the shape of the macaroni and cheese noodles) taste great! You can't even tell they are gluten free. I can't even imagine how hard it is with three kids having this problem. Good luck!

wheeleezdryver · September 25, 2010

Hi and wecloeme to the board!

I am having issues with our internet provider, so can't say much, but I just wanted to say that I, too, am a Spousea Caregiver & i can totally relate...

jackay · September 25, 2010

Debbie,

You and your family are in my prayers. Having to go gluten free is hard enough when the finances are so limited. Many of the suggestions others offered are quite expensive.

Using whole foods is about the best advise there is and also the healthiest. Rice, dried beans and potatoes are pretty inexpensive and you can build meals around them. It is difficult to do though if you have to send packaged lunches to school. You will find so many helpful ideas in this forum.

I am hoping that your husband will get stronger and your children's health issues will also improve. My guess is that a lot of children with ADD have food issues and they don't get diagnosed, just covered up with meds.

You seem like such a strong person. It will get easier as time goes on. Your kids will be prevented a lot of issues by getting off gluten while they are young. Will you be going gluten free, too?

Hang in there and keep us posted. Vent to this forum if you need to. I do that often when I get cross contaminated and it helps me get through.

crimsonviolet · September 25, 2010

Hi from another Houstonian! (well Katy, but close enough ) We are undiagnosed officially, but DH and I and both kids have been off gluten for a few months now and we've seen huge changes. My son was showing signs of autism, ADD and ODD and when he's off gluten he really doesn't have any behavioral issues at all. I'd guess your daughter's rash is Dermatitis Herpetiformis. I get the same thing on the crease of one elbow.

It doesn't have to be terribly expensive to eat gluten-free, even with a few convenience items thrown in. I usually shop at HEB, and only rarely venture to Whole Foods. I love the Betty Crocker gluten-free baking mixes and Bob's RedMill pancake mix, and I keep a bag of gluten-free flour on hand for the odd muffin craving, but other than that we mostly eat "normal" foods that happen to be free of gluten. (Mission tortilla chips, Lays potato chips, HEB brand organic ketchup and mustard, Ore Ida fries, etc.) The HEB close to me also has a gluten-free Bob the Builder pasta that my kids love and it's less than $3 per package. And of course as others have mentioned, eating whole, unprocessed foods makes it really easy to avoid gluten.

We really try to avoid eating out because of my son's reaction to gluten, so I often pack food whenever we're going to be out during a mealtime. Kid-friendly bento style meals tend to work really well for us.

This site has been a fantastic resource for information and support.

Good luck and big hugs. You can do this.

crimsonviolet · September 26, 2010

Also, which school district are you in? DH used to work for food services at HISD and says that every district in the city (maybe the state) has a gluten-free meal option for kids on the free lunch program. You just need to get in touch with the nutritionist for your district and they will get the kids set up.

sb2178 · September 26, 2010

You should be able to get a "medical" IEP, which it sounds like you probably already have something along those lines with the asthma, too.

Spring roll wrappers are another fun lunch option, but rice in bulk along with beans and corn is cheaper than just about anything processed. Sweet potatoes are better than white rice if your kids aren't really into brown rice and most kids adore them. Serve them with chili, or BBQ, or just beans and cheese. I've heard of making sweet potato "carrot sticks" for lunches, but I've never done it. Pudding and custard are good desserts too when you want something with sugar instead of fruit.

My favorite pasta, the corn/quinoa one, was still $3.20/lb bought in bulk (10 lb bag) from the giant online retailer. It is cheaper than the grocery store $8.58/lb but pricey compared to rice. I've held my grocery costs stable by growing my own vegetables, for the most part, but come winter... oh well.

cyberprof · September 26, 2010

Also, which school district are you in? DH used to work for food services at HISD and says that every district in the city (maybe the state) has a gluten-free meal option for kids on the free lunch program. You just need to get in touch with the nutritionist for your district and they will get the kids set up.

Debbie, I think that this is one the the most helpful points of information. Seriously, if your kids need a free lunch, they should be able to get a SAFE meal every time. If the School District tells you otherwise, they are wrong and you might have to set them straight.

Eating gluten-free cheaply is not that hard, and other posters have given some good ideas. I don't know what your kids like to eat and if you work I know that it is hard to cook when you get home from work, so make-ahead dishes (made on the weekend or your day off) would be helpful. Check the cooking/baking thread for ideas.

I also hope that your husband's health issues get better if he goes gluten-free too... I think that they might. There are many people on this board who have improvements or less symptoms when they go gluten-free.

I hope that your whole family exeriences good health and happiness. Good luck!

Roda · September 26, 2010

Welcome to the board. Here is a link a ran across looking something else up and I thought of your post. It gives a lot of practical advice. Here is to better health for all of you!

Open Original Shared Link

Bobbie Jo · September 26, 2010

Thanks everyone for your replies to this amazing mom and wife.

My kids and I are also newly diagnosed, so the tips were VERY helpful. I also have been freaking out over the lunch issue. It's usually late at night as I gaze into my pantry wondering what in the world am I going to put in those empty lunch boxes staring at me. A tip I read that I'm trying to incorporate is to cook extra portions of the dinner meal and then use those for lunch.

I am so grateful for the tips on saving money. I took the kids to our local version of "Whole Foods" and $200 went way too fast. However, it was worth it, because the kids were very encouraged to see what they could eat. We just have to figure how to make at home, or splurge on those special things - like the Knnickuck (sp?) animal cracker cookies!!!! They taste like vanilla icing.

My kids are 8 and 10.

One other tip that was very reassuring to all of us concerning birthday parties - make and freeze cupcakes and gluten-free pizza. When it's time to go to a party, defrost and let the kids ice the cupcakes.

Thanks again to the mom who posted the question, and for everyone being so generous with your advice.

cyberprof · September 26, 2010

Thanks everyone for your replies to this amazing mom and wife.

My kids and I are also newly diagnosed, so the tips were VERY helpful. I also have been freaking out over the lunch issue. It's usually late at night as I gaze into my pantry wondering what in the world am I going to put in those empty lunch boxes staring at me. A tip I read that I'm trying to incorporate is to cook extra portions of the dinner meal and then use those for lunch.

For lunch, here are some ideas:

Soup or chili or leftovers (spaghetti, stew, etc.) in a thermos. I heat up HOT water and pre-heat the thermos and then dump out the water and then the thermos stays hot until lunch. Make a pot of soup or stock up on soup on sale (Progresso Southwest Chicken/rice, wild rice/chicken, regular chicken/rice and Beef pot roast are gluten-free last time I checked - read the label and stay away from the "light" versions. Hormel Chili) Target has Progresso on sale a lot.

Some real gluten-free stuff is expensive so I try to make it a treat or add it to regular items to lower cost.

Tortilla chips and salsa or tortilla chips and hummous. Mission, Santitas or Doritos(original flavor -check label) are gluten-free last time I checked. Put chips into sandwich baggies.

Craisins or raisins - make trail mix with craisins, almonds, chocolate chips.

Applesauce, pineapple chunks, mandarin oranges. Get big size at Costco or Target and divide into small containers.

Envirokids cereal bars, lara bars, KIND bars or make your own.

Chex mix - homemade. See recipies on side of box. Add glutino pretzels or Ener-G pretzels.

Make muffins and freeze ahead, then put in lunch. Will thaw before lunch.

Small packs of peanuts.

The good thing about these as they all look pretty "normal" so if your kids don't like to look different, they won't.

Good luck.

Bobbie Jo · September 27, 2010