New Here...all Children Have Celiac

[jayshunee]

Hello Everyone,

My name is Robin. I wasn't sure if there was a welcome forum so I thought I would start here. I have three children that have been sick for a LONG time and were just diagnosed today with Celiacs disease. I also know that they have an issue with lactose but they are going to go ahead and look into that as well.

I just am a bit overwhelmed by all of this. We believe that I probably have it as well. I also have tummy issues. I am also 5 months pregnant. SO really I do not know where to start from here. SO I have to cut all gluten and lactose stuff.. Where do I start?? Any ideas that might help??

Thank you Very much!!

[flagbabyds]

Of course this is a welcome forum, we welcome all newcomers to the forum.

I would advise that all the family goes gluten-free including your spouse to make it easier on the kids to have a complete gluten-free household.

I would say that you go to the site index on celiac.com and look at the safe and forbidden lists which help with all the ingredients that you need to look for in the products you buy.

I would reccomend that if you do not need an official diagnosis for yourself taht you go gluten-free

sorry I have to go to dinner, i will post more later.

[Guhlia]

Welcome!!! I just wanted to add, be sure to check all your body products like toothpaste, shampoo, and lotion as all of these may eventually end up in your mouth and gluten you. Also, you will need a new toaster or toaster bags. The diet really does get easier as time goes on. A good gluten free cookbook may give you a light at the end of the tunnel. I know it really expanded my diet options. Also, I'm sure someone will post the list of companies that pledge to list gluten on their labels like Kraft does.

[CarlaB]

Welcome!

Remember, meat, chicken, fish, eggs, fruits, veggies, potatoes, and rice are all naturally gluten-free! That gives you a place to start.

Now, you need to find replacements for your favorite gluten foods, and discover which of the foods you eat are gluten-free already. Also, read lotions, shampoos, conditioners, etc. Everything needs to be gluten-free!!

You need new wooden spoons, cutting boards, toaster, and teflon. Stainless steel is okay after washing. Cast iron can be cleaned in the self-clean cycle of the oven (so I hear) then re-seasoned.

The lactose intolerance may be temporary. Many celiacs are lactose intolerant in the beginning because the part of the villi that digests the milk is damaged. Once it heals, lactose isn't a problem. For some, however, it's permanent because it's the casein not the lactose that is a problem (I am casein intolerant).

Keep reading!! You will learn a lot here. We're all here to answer questions, so ask away!

Dietary response is a valid diagnostic tool, so you can just go gluten-free and see how you respond. Or, you can go through the testing, but you have to keep eating gluten until all the testing is completed.

[mommida]

I just want to say welcome and everyone has already touched on most of the advice that I would have given to you. I will suggest the book by Danna Korn, Kids with Celiac Disease, it goes into a lot of issues that you will deal with in the first year of the diagnoses.

You can PM me for the delphi forum safe list (you still have to read EVERY label- but it is a great start), gluten free medication list, you should have found the safe and forbidden lists very easy on this site, consider keeping a food journal to pinpoint other sensitivities or hidden gluten, and pay close attention to the controversial ingredients- these are ingredients a lot of Celiacs have problems with or have different answers depending on which country the product was produced in.

Check your local area for a support group.

L.

[hannahsue01]

Hello Everyone,

My name is Robin. I wasn't sure if there was a welcome forum so I thought I would start here. I have three children that have been sick for a LONG time and were just diagnosed today with Celiacs disease. I also know that they have an issue with lactose but they are going to go ahead and look into that as well.

I just am a bit overwhelmed by all of this. We believe that I probably have it as well. I also have tummy issues. I am also 5 months pregnant. SO really I do not know where to start from here. SO I have to cut all gluten and lactose stuff.. Where do I start?? Any ideas that might help??

Thank you Very much!!

If you think you are celiac and being you are pregnent I would go gluten free imediatly. I did not know I was celiac and my second baby was born at 6 months gestation due to this disease.....they said my body wasn't obsorbing enough nutrients to sustain her. You need to start absorbing nutrients as soon as possible. Congradulations on the new baby!

[Guest nini]

welcome!

you've gotten some great advice so far, I just wanted to add that I have put together a "Newbie Survival Kit" it's not much, just a collection of files I wish I'd had when my daughter and I were first diagnosed. To get this newbie kit all you need to do is click on the link below in my signature for my webpage and at the bottom of my webpage you will find the link for the newbie survival kit. Enjoy!

[AndreaB]

Welcome!

May I ask how old your children are? I tested through enterolab after my then 2 1/2 month old broke out with eczema. After being gluten lite for a month and a half, I learned about enterolab. I found out that my, my daughter and my oldest son also have gluten sensitivity or early stages of celiac. My infant son, I'm assuming the same as he reacted to oatmeal when I gave him that.

Try to stick to the naturally gluten free stuff as much as possible in the beginning. It does get easier. If you want store bought bread than we like food for life or enjoy life. I have also heard many good things about Kinnikinnick. Enjoy life is free of major allergens and they have a good cookie/bar line. Since my family is also soy & dairy intolerant we don't venture to other brands.

[Mango04]

Hi, welcome . Don't hesitate to go gluten-free yourself! It can't hurt. I'm really glad your children got diagnosed. This means they now have a great chance to get heathly again I know it seems overwhelming at first, and while it is a learning process, eating gluten-free will become much easier in no time.

I second Carla's suggestion to start with the foods that are naturally gluten-free. It will save you the frustration of trying to decipher really long and confusing labels at the grocery store. You can make endless amounts of meals with chicken, beef, fish, pork (and all other meats), eggs, fruit, veggies, rice, beans, lentils, nuts, seeds, oils, herbs etc. etc.. Check out the recipe forum for some good ideas.

Fom there, you might want to add in a few food "substitute foods." Tinkyada is a really good gluten-free pasta. For children, Ian's makes a good line of kid-friendly foods. Most gluten-free pancake mixes are great (I like Arrowhead Mills). Chebe makes a great pizza crust. Kinnickinick is a popular brand (they make bread, donuts, cookies etc etc etc). One of my personal favorite baking mixes has always been Cause Your Special by Gluten Free Gormet (they make tons of stuff - muffins, breads, cakes etc. and it's all really good).

You can also purchase some gluten-free flour mixes (many options can be found at health food stores) and easily substitue that for regular flour in your favorite recipes.

I'm dairy free as well, so all of the above suggestions take that into consideration. Rice, almond or soy milk can be used in place of dairy milk (Rice Dream however is not gluten-free) and Earth Balance is an excellent butter substitute if you decide to eliminate dairy.

Good luck Browse some past threads and I'm sure you'll find more information than you ever even wanted

[GFBetsy]

Just wanted to say welcome and give some words of encouragement:

At least when all of your children are gluten free, you don't have to worry about anyone feeling left out because "THEY got to have Cheerios, why can't I?!?". Or "How come SHE always gets to have the gluten free cookies?" This way they all eat the same things and don't have a chance to accidentally eat someone else's sandwich!

The first little while is the most overwhelming. I would suggest that you sit down and make a list of all of the gluten free things that you already eat and come up with a nice list of meal options for all 3 meals. This will make coping with the diet MUCH easier. I think it's worst when you list all of the things you can't eat . . . when you start thinking about all the things you CAN eat, the future looks brighter.

Best Wishes!

[Nantzie]

Welcome to the board! I'm glad you found us here. This is a goldmine of information and support.

Nancy

[jayshunee]

Thank you for all the kind words of encourgement!! My children are Josiah 5 yrs old in 2 weeks, Julia and Joanna twins girls age 3 yrs (4 in a few weeks). I am also expecting my 4th in Feb. What is strange is that they all tested positive but they all have always been healthy and active children. They are by far underweight!! My son is the size of a 7 yr old!! He is just huge!! The twins are obvisouly smaller due to being twins but they have never been under the charts. All three quit nursing at 4 months. We, even the doctor, thought it had to do with the vaccinations. It happened right after. They also all had really bad reflux as babies and Josiah even was on zantac for awhile.

My mom told me last night that I have had tummy problems since I was a baby but they didn't check for these kinds of things when I was little. They just told her I had gas and reflux. I was a miserable baby and small child. I was also as skinny as a rail and very picky. So she was really wondering if I had it since I was a child.

I do look forward to getting to know you all and getting started. My kids are also ill with fevers and a bad cough that they have had for over 9 weeks now. So I am still waiting for an appointment in Boston at Children's to try to figure out what that is. My doctor didn't want me to change anything yet until after we have been to Boston. Ugh!

You can all feel free to give me lots of advice on what cook books, books, recipes, and etc that would be best. I will do what I can. I am also very limited on money so that will make it a bit harder I am sure.

Thank you EVeryone!!

[Suzie-GFfamily]

Hi Robin,

In the spring myself and the 2 oldest of my 3 kids tested pos for celiac disease on a blood screen test. My youngest was a baby and not on solids yet when this all happened.

It was a bit overwhelming to realize so many in our family were celiac (my mom tested pos too).

I'd suggest that you take a big, deep breath and deal with this as calmly as you can. Yes it can be very overwhelming, but it'll get easier as you have more time to learn about it and how you can help your children. I found that I went through ups and downs after the initial blood tests came back- sometimes I was so worried about my children's health, my baby's health (because I was breastfeeding) and my own health. Other times it was easier to deal with. Trying to decide which choices to make regarding diagnostic tests was very stressful- weighing pros and cons of the various choices and trying to choose the "best" option was difficult. Once we finally made the choices that felt best for us it did get easier and less stressful.

We actually had several months between the pos blood tests and the final diagnostic tests (endoscopy/biopsy). So in our case, this gave us some time to learn, to try out some new gluten-free foods and find places to buy food. But we didn't have to switch our diets quickly- since the kids and I had to continue to eat gluten until the testing was finished.

My 2 oldest kids (age 8 and almost 6 yrs) have started their gluten-free diet this month, I started mine in June. Our household is now gluten-free and things are going really well.

Try not to worry too much about your pregnancy and your new baby- you've already had previous pregnancies and you didn't know about possible celiac disease with the other pregnancies (one of which you were carrying twins). Celiac disease affects everyone in so many different ways. Obviously, you'll want to find out if you have celiac disease - but try not to stress over it too much. You're family is very lucky- most celiacs are not diagnosed.

{{{{{{{{{{{{{{{{{{Hugs}}}}}}}}}}}}}}}}}}}}}}}

Suzie

[TCA]

Just wanted to say welcome! I think I have it too, but just went gluten-free and feel great. my kids both have it. In my sig line there is a link to another discussion on how to get started. I think you will find it very helpful! Hope you all are better soon. I would especially encourage you to go gluten-free ASAP. This can really impact the health of the baby.

[CarlaB]

If they know your children have celiac for sure, I would not be waiting to start them on the gluten-free diet!! They may be having trouble getting over their colds because their bodies are so taxed from eating gluten. I would start going gluten-free immediately! I'd also get them off dairy .... milk is notorious for thickening mucus. There is nothing unsafe about a gluten-free diet, or not consuming dairy when sick ... but it is unsafe for a celiac to eat gluten.

[jayshunee]

Thank you Ladies!! I totally agree with all you said. I do want to start them but we have more testing on Nov. 1st and they want them to still have the gluten in them just in case. In case what.....I don't know. I also need that time to figure out the whole meal thing. I have nothing but read all day long, online and in books I got from the library. I read the Kids with Celiac today. That was great and very helpful!! I am also limited on money and have to try to figure this all out on a low budget! I know it will work out.

QUestion?? Do I need to replace all of my cooking utensils, pans, baking sheets, pots and all that stuff? I know I need to replace my toaster oven. What about my crockpot? I use it all the time. WIll just a good washing in the dishwasher take care of all of these? These are the kinds of things that I am unsure about. I understand the whole food thing pretty well.

[AndreaB]

We, even the doctor, thought it had to do with the vaccinations. It happened right after.

That's interesting. I think vaccinations triggered it in my infant son. He broke out with eczema. He hasn't been tested but led the rest of us to get tested. He does react to oatmeal though so I won't be putting him through the gluten. I will be getting gene testing for him through enterolab. My kids are 6 (7 in dec), 4 and 11 months.

Also congrats on the upcoming arrival.

QUestion?? Do I need to replace all of my cooking utensils, pans, baking sheets, pots and all that stuff? I know I need to replace my toaster oven. What about my crockpot? I use it all the time. WIll just a good washing in the dishwasher take care of all of these? These are the kinds of things that I am unsure about. I understand the whole food thing pretty well.

You will want to work on replacing your plastic utensils. Scratched nonstick pans and baking sheets. If they aren't scratched they should be ok. Stainless steel and glass with come clean so your crockpot should be fine. I assume you could use foil in the toaster over until you can replace it.

You'll also want to look at personal care products. A lot of them have gluten in them.

[GFBetsy]

I personally would not worry about the crockpot, as it is hard-glazed and is unlikely to absorb gluten from the foods cooked in it. Be careful with wooden spoons, cutting boards, etc., as those are more pourous and are more likely to retain old gluten protein in the cracks/grain.

Best Wishes!

[Suzie-GFfamily]

Thank you Ladies!! I totally agree with all you said. I do want to start them but we have more testing on Nov. 1st and they want them to still have the gluten in them just in case. In case what.....I don't know.

Most testing for celiac disease requires the person to still be consuming gluten, otherwise the results will not be valid. Luckily, once the gluten-free diet is started the antibody levels should normalize and the gut should heal.

Nov 1st is not very far away, so it's not too much longer for you to wait. And it will give you a chance to get a few meal things figured out.

I also need that time to figure out the whole meal thing. I have nothing but read all day long, online and in books I got from the library. I read the Kids with Celiac today. That was great and very helpful!! I am also limited on money and have to try to figure this all out on a low budget! I know it will work out.

QUestion?? Do I need to replace all of my cooking utensils, pans, baking sheets, pots and all that stuff? I know I need to replace my toaster oven. What about my crockpot? I use it all the time. WIll just a good washing in the dishwasher take care of all of these? These are the kinds of things that I am unsure about. I understand the whole food thing pretty well.

Making meals from fresh meat/fish/poultry/eggs plus fresh fruit and veggies will be gluten-free and is usually cheaper than buying prepared foods anyway.

We found suppers were easy to keep gluten-free, breaskfasts weren't too bad either (Nature's Path and Envirokids make gluten-free cereals- they tasted a little different than regular cereals, but some fresh fruit on them added some nice flavour).

Lunches required some new ideas to make them gluten-free. But you don't need to use expensive gluten-free breads. Plain rice cakes can be used instead of bread- they are cheap. Or you can make sandwich wraps using large lettuce leaves instead of a flour wrap. A lot of regular salad dressings are gluten-free.

Gluten-free english muffins (Kinnickkinnick) can be used for sandwiches- the cost can be reduced by cutting them in 1/3 instead of halves- and you can make open faced sandwiches with toppings of your choice- which will give 3 sandwiches for each english muffin. Heating them in a toaster oven to warm up the sandwich fillings can be good too.

I'd just start with a new toaster/toaster oven and replace any wooden cutting boards and utensils. The other stuff should be OK. If there is any residual gluten on the pots, it should be taken care of in the dishwasher and over time any small amount remaining will be gradually washed away each time the pots are washed.

Suzie

[Mtndog]

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