Need Some Help For My Baby

[debbie-doodles]

Hi, I'm brand new here. I just today found out that my two year old girl has celiac disease. I have no idea what to expect or what I'm in for. At first I thought it was no big deal...that I would just buy her special bread and pasta and crackers and not let her eat pizza. But as I have read things on this site, I'm getting more and more scared to let her eat anything at all. I'm so worried now. What am I in for? Is there a real concern for just traces of gluten in things that others have made? What are the first steps I need to take? Please help me.

[celiac3270]

Okay. First, here's a link to where you can get safe and forbidden ingredient lists. Although the forbidden grains are only rye, barley, and wheat, they are many derivitives you need to be careful of. And, if you scroll to the bottom of the forbidden list, they give you a list of questionable ingredients. Gluten can be hidden under such ingredients as natural flavors, artificial flavors, caramel color, etc. Now, calling all the companies then proves to be a daunting task. There are a few options, though, to minimize this. First, the companies below clearly list gluten on the label. So if there's wheat in natural flavors, they would write: Natural flavors (wheat) or natural flavors from wheat or something of the sort that doesn't hide any gluten on the label.

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

Delphi Forums is also available. Go to Open Original Shared Link ...then go to health and wellness (on the left) and then the first one should be on celiac disease. Registration is free and I'd recommend it for the terrific product lists they have. If you don't want to register, or just want the list faster, I can e-mail it to you. They just came out with a new one a few days ago that I posed about under food products. It's about 79 pages long and also shows when it was confirmed gluten-free (so you know if it's been so long that you should check again)...and often gives phone numbers. There's also another list on the internet, but it will have some mistakes--the list at Delphi shouldn't have many, if any.

Open Original Shared Link

Open Original Shared Link

So, e-mail me if you want that list, and tell me if you would like the one big document of 79 pages, or the folder of small lists (i.e. one for snacks, one for medication, etc.) I'd recommend the big list which has it all compressed into one document with the same organization, but it's up to you.

Welcome!

[lovegrov]

These forums are invaluable but they can also scare people to death, in part because a fair percentage of regular posters are also people who are the most sensitive to gluten and who frequently have other health problems that complicate things. Untreated celiac is indeed a serious thing and getting used to the diet can be tough at first, but most people with celiac adjust well and are able to eat out and enjoy a fairly regular life. The most severe reactiosn you read about here and elsewhere are definitely not the norm.

richard

[KaitiUSA]

The info celiac3270 gave you is priceless. I wish I had that available to me when I was first diagnosed. It would have saved me alot of time and money.

Print out the forbidden and safe lists he gave you the link to. That will definitely help you out while you learn the ins and outs of celiac.

The brands he listed like Kraft are very helpful. Yes you still have to read labels but all you have to look for on those labels is wheat,rye,barley, oats because they will not hide anything even under otherwise questionable ingredients.

Richard is right about these forums scaring people. The more you avoid gluten usually the more sensitive you become when you have the slightest amount. Alot of people on here if you read the signatures also have other things as he mentioned. I have graves disease(hyperthyroid)...the longer it goes undiagnosed, the more problems arise. Alot of the health issues we have in addition to celiac are highly connected with undiagnosed celiac. Alot of people went undiagnosed for years until they got an answer.

The good thing is they caught this while your daughter is young..and she didn't go years undiagnosed

You need to throw out your toaster or get a separate one for her bread. It may seem hard and overwhelming at first but it is not and it gets easier when you learn what to look for and what gluten is hidden under.

Good luck and hang in there

[mommida]

My daughter is the same age as your daughter, she was diagnosed last July.

I would like to reccomend the book, Kids with Celiac Disease by Danna Korn. It can help with the some of the feelings that might be happening for you and your daughter. The biggest tip that came from the book and can't wait for you to get the book. Get your gluten free replacement treats! Children are given/offered all kinds of stuff, and society uses food for celebrations all the time. Pre-school and kindergarten be prepared to have cupcakes once or twice a week for birthdays at school. Some people might not understand if your child is excluded from the celebrations because of the gluten foods, it is like being punished. Make sure you have something gluten free that your child loves.

Laura

[mrsfish-94]

I have known for a year that my daughter might have Celiac. But I didn't take her off gluten until Feb of this year. And I wish I had done it sooner! She is doing so much better in everything. I was really stressed out that first month, trying to make sure I wasn't giving her ANY gluten or dairy. But what you must realize is...until you've gone a few months doing this...you may by accident give her gluten. And remember that is ok...to make a mistake. I don't know how many times in the last month I purchased something (without thinking to look) And had to take it back or just eat it myself. It does get easier with time. I will give you a few items that have saved my life these past few months.

Delimex Chicken taquitos

Ore-Ida Shoestring or Golden French Fries

Lay's Stax Original Potatoe chips

Pamela's gluten-free chocolate brownie mix (I make them as cookies and give as a treat)

Van's Wheat Free Waffles

Ener-g Rice Bread

Quinoa Flakes (makes the best "oatmeal like" hot cereal)

Taktinka (sp) rice spagetti noodles (she will never know the difference)

Del Monte Traditional spagetti sauce

I also purchased a Hot air popper to pop popcorn. That has been great! And the popcorn can be purchased for cheap.

I have learned to really cook. I get so excited now when I can cook something from scratch and know it is healthy and good for my daughter to eat. If you want some recipes or advice you are welcome to PM me. We are all here for you!

[debbie-doodles]

Thanks so much for the lists and the replys.

I'm going shopping in a bit to buy new pots and pans and utensils for my daughter, along with food just for her. I'm gonna mark her special, and safe, items with pink stickers so she can easily see that they are safe (also for babysitters and family members to be able to know at a glance) and keep her cooking suppies in a separate cupboard. I have printed off the lists and am making some of my own as I find new info. Anything else right off that I should think of and take care of?

Also, we have family dinners a LOT. I have explained Leah's situation to both sides of the family and they are going to be helpful and cooperative. But now after reading some more, I'm thinking I shouldn't let her eat off of their plates or eat food that was made in their pots/pans. Even if I check the labels of things they have made, couldn't it still be possible for cross-contamination? How careful with those kinds of situations should I be?

Also, what are some kid-friendly meal ideas that are quick and easy and can be taken on the go (or on vacation--we have one planned for 2 weeks away! yikes!).

Thanks for all of your help while I muddle through this.

[celiac3270]

In any processed food, there's potential for contamination, but I think with most of the companies you don't need to worry too much about it. However, this leads me to one important point, which is that if it makes you sick repeatedly, even if it claims to be gluten-free, don't eat it. Umm...if you see a product that is gluten-free from the ingredients, I wouldn't worry unless it explicitly advertises that it's made in a wheat factory--maybe then they're trying to cover their... butts (euphemism) because they have a great amount of contamination. I wouldn't trust anything made by Quaker even though they have a few gluten-free products, but I do trust FritoLays. I think it's a personal decision as to which companies you trust. And some people just don't trust any unless they have dedicated lines....

While on FritoLays, they have their gluten-free list on their website, I think it's under some nutrition section. Though they have a very extensive gluten-free list, if you want to be extremely careful, the products made on dedicated lines include Lays Stax (they're like Pringles), regular Lays, Fritos, and... anh...there's one more.

About cross contamination: it's not necessay to replace pans/pots unless they are made of some of the more porous or hard to clean materials...teflon is bad and should be replaced. Any wooden spoons or plastic spatulas, etc. should not be used for both gluten-free and non-gluten-free foods. But if steel pots/pans are cleaned very well they should be okay. And I wouldn't worry about plates, again, as long as they are cleaned well and there isn't residue or something on them .

For kid-friendly on the go.......McDonalds fries are gluten-free. If you get bread from Kinnikinick (sp?) or the Ener-G tapioca loaf, (those are the best 2 in my opinion) you can make PB & J or grilled cheese sandwiches. Kraft cheese read labels, Jif or Skippy PB is gluten-free, and most jellies are--I think Smuckers? There's probably one on the Delphi list I e-mailed you about a half hour ago.

-celiac3270

[debbie-doodles]

Thanks so much celiac3270! I got the list and have started looking it over. Of course now my head is swimming with so much info! lol!