Starting Out

[HeatherMelissa]

OK, so my daughter was diagnosed Thrusday and I am feeling a little overwhelmed.......WHERE DO I START?

She is such a picky eater that I am going to try to adapt some of the things she eats to gluten-free.

Do I go on a major shopping spree (Lucky to have a Whole Foods literally around the corner)??

Do I buy cook books?

Is it safe to go gluten-free is you are not diagnosed? I would think so. I am currently pumping breastmilk for her so I want to go gluten-free and I have a 6 month old daughter that I am nursing.

When there is 1 person in the family that has celiac disease, does everyone make the change. Seems to be fair. Especially if i want to encourage my daughter to eat other foods.

UGH! Please give me your thoughts!

[AmyandSabastian]

Welcome to the group. I was where you were 8 short weeks ago, wow how times flys. I have a 7 month old son that has celiac disease. I thank god everyday that I found out so soon, he was regressing and losing weight and it could have been real bad if we let it go any longer. plus he was in so much pain everyday.

Step one is done sweetie, you have found the probelm, I promise it all gets better after this. The feelings you are going through are so normal and I still fight with them, as my husband and I are going gluten-free in 2 weeks. I am cleaning out pantrys and freezers and bawling at the same time. Some people suggest your house goes gluten-free and some do not. I chose to so I wouldnt have to tell my son no in his own house and also for the health of my family as my husband and I are in the middle of testing our selves.

Whole Foods is my savor!! I have to drive 2 hours to get to one and I do it every 2 weeks. Another savor to me is this board. This board is full of wonderful people that are so know so much about it. I feel so comfortable asking and talking about anything with them. They still help me through this journey daily. Now since I am so new to this I can't help you too much except tell you I am willing to listen anytime. I understand how hard this is and will be for life. Again welcome and good luck.

Amy

[celiac3270]

Hi HeatherMelissa,

The most important thing is that you found it! How old is your daughter? Anyway, I'm 13 and consider myself to be a semi-picky eater ....celiac disease makes you less selective, though....you have to try new things to eat . I didn't get any cookbooks cause many of the recipes are too complicated and requiring many obscure ingredients in addition to being more adult-friendly. If your entire house goes gluten-free, it might be a good idea to invest in a cookbook (for the adults, primarily and maybe introducing some new things to your daughter), but for just children I think it isn't necessary. By the way, it is not dangerous for someone without Celiac to go on a gluten-free diet. It is healthy for anyone -- with or without Celiac to avoid wheat, rye, barley, malt, debatably oats, etc....it's a healthy diet for everyone. You mentioned something about breastfeeding...just as a warning: gluten does pass through breastmilk.

My suggestions: gluten-free foods are expensive -- you can get fruits, fresh meat, potatoes, chips, etc. at a grocery store but when you get into brownies, muffins, breads, pastas, pancake mixes, and other things that you purchase at a healthfood store....that's when it can get really expensive. If money is not an issue, by all means put your family on a gluten-free diet. It would make things easier for your daughter and would help avoid contamination (I'll explain later, cause I'm not sure how much you've researched ). However, it adds up really quickly. You can get a tax break for gluten-free foods, but you have to keep a meticulous record and it doesn't seem worth the effort....I don't know much about it, but maybe Kim could explain it to you if you're interested.

If you don't put the entire family on a gluten-free diet, I'd like to make a suggestion that has helped me and would help your daughter, especially as she gets older. Once a child starts making their own food choices, they may not immediately know what is good or bad, so if you can, I'd recommend designating some cabinets in the kitchen or pantry as being just gluten-free. This shelf can be trusted as a gluten-free stock of foods where a child can mindlessly pick something out and also where parents, at the beginning, can find all the gluten-free foods....this reduces your chances of making a mistake.

Contamination is a BIG issue with Celiac. Contamination is when a gluten-free food comes into contact with a gluten food. Since the tiniest crumb of gluten can wreak havoc on the intestines, it is critical to avoid contamination. To do so, have a separate toaster or toaster oven for gluten-free and gluten-containing foods. In addition, pots and pans can retain gluten, even after washing. You should get new pots, pans, and cooking utensils.....at the very least, make sure you replace anything teflon or wooden (such as wooden spoons) as these two materials retain gluten more than others.

I have a list of gluten-free foods that I've posted too many times on this site, so I won't post it again. It contains a summary of what I think are the best gluten-free foods....and it's a good starter...you'll form your own opinions, but it's helpful to have food companies to build on. There are some really amazing gluten-free foods out there, but there are just as many bad ones.....the key is finding the good ones quickly with as little experimenting as possible .

Shopping spree?....first make sure you know exactly what you're going to get...what foods you need, what you have in your house that isn't gluten-free (and there's gonna be a lot...I can tell you that), and make sure you know all the bad ingredients. Natural and artificial flavorings are questionable, so you'll have to call any company that doesn't say on the packaging "gluten-free". Remember that wheat-free and gluten-free are different. Whole Foods really close? That's great!

Feel free to e-mail or PM me with any questions you might have .... Jessica (angel_jd1) has a site, USA Silly-Yaks, which has a lot of recipes, gluten-free restaurants, and a message board. I believe there was one post on gluten-free baby food (you have an infant?). You can find the site at: Open Original Shared Link. It's very helpful, but you have to become a member (free) to view anything: links, downloads, recipes, message board, etc. Most importantly, read these boards often, ask questions, and you'll soon find you know a lot more. I've been gluten-free for...exactly 5 months and I know MUCH more than my doctor about celiac disease... ....good luck and ask a lot of questions!

-celiac3270

[Boojca]

First, for amyandsebastian, I must say I laughed when I read your post. I remember the first day you posted to this board, so lost and confused. And now you are handing out advice like a pro! See, it really didn't take long did it!?

Anyway, everyone here is great heathermelissa and celiac3270 and Amyandsebastian are right: ask questions. That's what we're all here for, and the support is incredible. My 2 1/2 year old son was just diagnosed in June and I can honestly say I have no idea what I would've done without the internet and these message boards (I belong to the USASillyYaks one that celiac3270 mentioned as well...just an FYI you do have to become a member to view all the links, etc. but it doesn't cost anything you just need to register) I can only imagine, in terror, trying to find all the information I have now pre-internet. Ugh.

My best advice? Get a mainstream productt listing. You will be amazed at what is out there that's gluten-free and "normal". I highly recommend buying the one from CSA Celiac. It's $20 well spent. There is also a link to a free one, put together by a support group in Wheaton, IL, in one of the forums here. The foods & shopping one I think.... that one is free and is GREAT. And, there is yet another one available at Delphi forums. I don't know the url for that though, maybe someone else does? I have all three, and there are things on each that are not on the others so it's been a great resource to have them all.

Hang in there. I know it is overwhelming but believe me, and AmyandSebastian, it does get better and easier. Especially with support like this message board!

Bridget

[flagbabyds]

Welcome to the boards! You have found a place of support and much use.

I must say that your daugghter is lucky to be diagnosed young. I was diagnosed @ 20 months old and I an the only person in our Bay Area CA R.O.C.K. group who doesn't remember what gluten tastes like and I don't get cravings. I personally don't agree wtih Coutler about cookbooks. They were my moms savour! I love to cook and make complicated recipes but I guess he doesn't they would probably be good to have around because you can always make something gluten-free in less that 5 hrs and you can usaually adapt recipes pretty well from your old cookbooks that are non-gluten-free and just substitue the all-purpouse flour with A Gluten Free Pantry gluten free flour blend and then put 1/2 teaspoon of xantham gum for every cup of gluten-free flour. My mom uses Betty Hagman's first two books the most, "The gluten Free Gourmet" and "More from the Gluten Free Gourmet (my mom is quoted on the back of this book) A good book for kids is "Incredible, Edible, Gluten Free Foods for Kids" these recipes are simple and more sweets and treats for your kid and when she gets older she will probably be able to make most of the recipes by herself because they are really simlpe. A really good book, but labor intesnsive recpies, Cooking Gluten Free. It has the best recipes but they take a while. If you are looking for an elegant dinner for relatives that your daughter can also eat, use this book. If you get a bread maker (which I would reccomend) Betty Hagman's book The gluten Free Gourmet Bakes Bread has tons of bread recipes and it is really good bread. My mom makes me homemade bread and I will give you the recipe as she types it up .

If you are not going to do the whole house gluten-free then You will probably want to set aside a gluten-free pantry, drawer, counter, and toaster. I was lucky because we remodeled our house after I was diagnosed. I have my own fridge that holds all my gluten-free flours and other things I don't want my sisters to contaminate.

maybe you would want to clean out a pantry( probably the one that didn't hold the wheat flour because that would be a pain to celan but maybe the cupboard that held the crackers because they were in boxes) and really scrub it and then put all her gluten-free foods there so she will know what is hers. You're probably not going to be able to bake with Gluten flours anymore because flour is so "Poofy" she probably has a chance the inhale some and then she will get sick. you can still eat gluten containing foods just not in the 'gluten-free Area' as we call it in our house.

You are very lucky to have a Whole Foods near you! First of all, are you doing no dairy too? just wondering. If you aren't then you have it a tiny bit easier. If she likes Yogurt then Yoplait is gluten-free. If you are doing no dairy then Silk Soymilk is gluten-free, all flavors. Block cheese is always the safest. You can go to the gluten free mall, there is a link on this site somewhere. It has lots of gluten-free products.

It is really up to you to make the whole house gluten-free but if you are giving her breast milk then you need to go gluten-free too. Gluten can be passed through the milk and as soon as you eliminate that source of gluten she should start feeling better. How old is she? I know I am asking a lot of questions but i hope that is OK. You may want to find a R.O.C.K. group around your area. It is Raising Our Celiac Kids and is a support group for kids and parents. Ours is very useful for the parents and then the kids just play and eat good gluten-free food.

It can not hurt you to go gluten-free if you are not cecliac. IT is a good diet for everyone healthy and easier on the gut.

Well if you have any questions you can e-mail me or PM me whichever you choose.

[Boojca]

I've actually found the bread mixes are probably easier to make without a bread machine....there is no kneading and then second rise to deal with. I'd spend my money on a good Kitchen-Aid stand mixer, which has been my lifesaver as the dough for gluten-free anything is much thicker, therefore harder to stir by hand or even hand mixer. The bread I've made I mix in the stand-mixer, dump into a bread pan, cover it and let it rise for 45 minutes, then throw it in the over for 30 minutes. Whalla, bread.

[dkmb]

A good way to decide which cookbook is right for you is to check some out of your local library. If they don't carry them, they should be able to do an inter-library loan from another library system. Our local library charges a $1 for each book to do this.

You can also get used books on Amazon or from Ebay.

I have also made breads from the mixes and found them very easy to make, more like a quick bread than a yeast bread process. They tend to be more expensive for the mix though than the fresh bread. Our local Whole Foods carries Food for Life breads for around $2.50 a loaf.

DK

[gZimmiZ]

Dear Heather Melissa, Overwhelmed! That is exactly how I felt when my husband and almost 19 year old daughter were dx within 2 months of each other this past May '04. The learning curve is steep, but worth it. Danna Korn's book Wheat Free Worry Free is a good place to start.

When you asked is it is safe to go gluten-free without being dx yourself, I thought of a question to post for others to answer. Should Heather Melissa get tested immediatly before going gluten-free so her blood work will be reliable?

Should everyone go gluten-free? I find it hard to eat anything not gluten-free infront of my darling husband and daughter. Our older child (21) insists on eating only gluten-free infront of them also. Somehow food just doesn't taste good if someone you love can't eat it. On the other hand, they tell me that It doesn't bother them to watch others eat, but I just can't do it.

Cookbooks? A great place to start. I am only starting so I am using many mixes for bread I find online that are recommend by other Celiac's. I did buy a bread machine after reading reviews from other Celiac's also.

I live in Central California and haven't found a support group and Whole Foods is 60 minutes away, so online boards have been a life saver.

We visited Encinitas and found a large health food store with a fresh bakery inside with gluten free cookies that tasted like homemade. Everyday I find something to feel encouraged about. God Bless You, ZimmiZ

[Kim]

Welcome.

Contact the University of Chicago Celiac Disease Program -- they send care baskets to newly-diagnosed patients. I think, at least at first, it's easier to use mixes than cookbooks. It's overwhelming enough to go gluten-free and I think learning to bake from scratch gluten-free can be difficult and probably best after being on the gluten-free diet for a little while.

Also, it's best that you and your husband get tested before going gluten-free in order to get accurate results.

Best of luck. Kim.

[HeatherMelissa]

OK, I am feeling much better now. We are going gluten-free, all of us. Not sure if we will be getting tested anytime soon. My daughter that has Celiac is 2.5 and has Down syndrome. So, that increased her risk. But, I want to go gluten-free because I am pumping breastmilk for her. She is extremely anemiec and we can't get her to take her iron drops. I also have a 6 month old. Maybe when I am done with the milk thing, I'll get tested. Husband is not 100% gluten-free, flour tortillas are a huge staple in his diet. He usually only eats these after work and Gabby is already asleep. As for Gabby, she only eats about 5 different things, and I want her to try anything, so gluten-free it is! I think her pickiness has a lot to do with the Celiac? Maybe afraid to try anything knowing it would hurt her?

We went browsing at Whole Foods and I feel much better now. I am sure I'll use a lot of packaged stuff holy expensive!!) until I feel more comfortable baking again. So all week, I have been slowing but surely cleaning out the fridge and pantry and making a list of what I need. I feel much better now.

I would like more information about cross contamination as my husband thinks I am over reacting. I'd like to give him some hard core proof!!! I guess because she doesn't have a lot of the typical signs (although she does have a few) he doesn't think she has it that bad.

OK, off to more posts!

[MichelleC]

HeatherMelissa...I fully agree about baking, I think Molly posted it. I use Bob's gluten-free Flour mix and Xantahn gum and have made choc hcip cookies that were among my best ever and brownies that are exactly like my old wheat flour brownies. Not real healthy in general, but a good treat when the kiddos need one!

Good luck!

Michelle

[celiac3270]

I think, at least at first, it's easier to use mixes than cookbooks. It's overwhelming enough to go gluten-free and I think learning to bake from scratch gluten-free can be difficult and probably best after being on the gluten-free diet for a little while.

I agree with Kim.....mixes are really great, but also simple. I think I don't like gluten-free baking because it often requires so many ingredients that I've never heard of or don't have in the kitchen. Mixes are great cause they already put all the obscure ingredients in for you . Try Pamela's Pancake and Baking Mix....it's great....pancakes are amazing........the great thing about mixes is that all they ask for are simple ingredients such as an egg, water, oil, milk, etc.

If your entire family is going on the gluten-free diet....you should get tested now.......while the results will be accurate.

-celiac3270