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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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TCA

List For The Newly Diagnosed

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I've seen a lot of posts lately asking how to get started. Why don't we make a thread of things to do to get started post diagnosis? That way we can direct new people to this thread to see the great ideas. All you old pros, add your info in. I'm still relatively new to this (9 mos.), but these are some tips that would have helped me:

1. Take a breath!!! You're not going to be able to do this overnight, but it will all come together. We're all here to help, so try not to panic!!!

2. Buy some gluten free treats that make you feel like you can eat!!! I highly recommend Enjoy LIfe snickerdoodles, Chebe breads and pizza crust, Cause you're Special (glutenfreegourmet.com) and Pamela's brands (on sale now at amazon .com), and Tinkyada pasta. If you don't have a good health food store near you, glutenfreemall.com is a good place to start and order from.

3. Go through your pantry and call the 1-800 #s on the backs of the package to see if they're gluten-free. Ask the manufacturers for gluten-free food lists. Most are great about this and will also send you coupons. The web also will have some companies' lists. This takes some time, but it helps you identify what you're already using that could be gluten-free.

4. Do the same with your med cabinet. Call about any drugs you take. This is sometimes harder to get info on, especially with generics. Vitamins, pain killers, cold meds, topical meds, everything has to be checked.

5. Move on to your health and beauty supplies next. This may not seem like a big priority, but it really is. Especially anything that goes on your hands. My daughter was VERY sick over some curel lotion we were using, then touching her bottles, etc. Unilever, lubriderm, and suave are some good companies for listing gluten ingredients, so that might be good to start with.

6. You don't have to throw out all your pans, but do be careful. I didn't realize this was an issue for months and months and got glutened several times. I wouldn't use cast iron, wooden spoons, colanders and scratched teflon pans. Other things will probably be ok if you wash them good and use the dishwasher!!!! Some people have used the self clean option on their oven to clean their cast iron.

7. Remember that a lot of pet foods have gluten. Wash your hands thoroughly after feeding animals. Be careful about the animals (dogs especially) licking you or the kids in the mouth or hands.

8. Be aware of Cross Contamination:

*Be careful for to have separate containers of Peanut Butter, jelly, butter, mayo, etc. Bread crumbs in common containers will cause a reaction. Squeezable condiments are great. We keep mayo, mustard, ketchup, and jelly this way.

*Make sure you thoroughly wash your hands between handling gluten and gluten free foods. Purell WILL NOT remove gluten, things have to be washed with gluten-free soap and water.

*Do not cook gluten-free food in a toaster that is used for gluten products.

*Glues often have gluten in them, so avoid using the paper towels with glue on them and be careful when playing with arts and crafts, washing hands thoroughly afterwards. No licking envelopes, stamps, etc. No playing with the paper towel roll.

*DO NOT fry things in oil that has been used for things with gluten in them. Major source of contamination.

9. Stick with brands you know are safe:

These companies do not hide gluten and always list Wheat, Oats, Rye, or Barley if they use them:

Aunt Nelly's

Balance Oasis (Balance Bars)

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbell’s

Cascadian Farms

Celestial Seasonings

ConAgra

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hillshire Farms

Hormel

Hungry Jack

Jiffy

Klodike

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Marzetti

Master Foods

Muir Glen

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Sara Lee and their subsidiaries (Kahn's, Ball Park, Jimmy Dean, etc...)

Seneca Foods

Smucker

Stokely's

Sunny Delight

T marzetti

Tone’s

Tyson

Unilever

Wishbone

Yoplait

Zaterain's

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And envelopes--DON'T LICK THE ENVELOPES!!!

(Great thread, T--I am SO impressed you are taking the time to do this when you have so much on your plate already!)

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Yes, I think reitterating number 1 is important - I am one of those people who has to have things done her way and done NOW, but I've come to realize after (trying to) be gluten-free for a month now, with no improvement, that this is a very slow learning process. I jsut now realized I've been using lipstick with wheat in it every day, not realizing I was poisoning myself more! :P

I have determined that it took me about 5 years to get diagnosed, so it will probably take about half that time for me to really figure out all the sources of gluten in my life :lol:

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WOW thank you for compiling that list of tips! :)

As a newbie just dx last week, this list has helped me think of things I wouldn't think of before. I never thought about envelopes, lotions, and make up! Yeesh!

I am trying to research everything in between running after my spirited 15 month old... it is so helpful to read things like this!

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does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?

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does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?

Hi Jacklyn--welcome in! :)

Off the top of my head, Dove Products will clearly list any gluten ingredients. Several people here use their shampoo and soap. I use ShiKai shampoo and conditioner (their bath products have gluten). Crest and Colgate toothpastes are gluten-free. For makeup, I use Bare Escentuals. A lot of their makeup line (but not all) is gluten-free. Same with Neutrogena. You can go into the Product forum and do a search for Neutrogena and there is a gluten-free list there. Always read the labels and if in doubt, call the company. ;)

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does anyone know offhand certain health and beauty products that are gluten free...such as soap, shampoo, makeup and toothpaste?

Just got word that SMASHBOX is all gluten free.

Aveda products almost all HAVE GLUTEN, so beware of those.

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This is a great thread, I just wish it would have been around when I was first diagnosed because it would have helped a lot :D

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In CANADA all Colgate-Palmolive products are gluten-free.

TCA, may I add something to your list? I think you and I have both done this.

10. Make a Print out for your pantry door (and Gramma's pantry door or whoever might be taking care of your gluten-free child -or you should you need taking care of).

My print-out is in two columns.

Gluten Free? Yes and No. Under the YES are lots of things like fresh fruit/veg, snacks that Ty likes - including brand names and flavours if applicable. Under the NO column is cereal, pancakes, cookies, breaded anything, soup, gravy, etc.

I also have a section in a box that says to check labels on these "friendly" companies that will not "hide" WROB/M. And it also says to beware of Hydrolysed plant protein, natural flavours, etc. if it's not one of the friendly companies. I have this in a word for windows file and have emailed it to a couple of aunts and cousins looking for gluten-free info.

Does that make sense?

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Guest nini

great list!

oh yeah, feel free to contact me for the Newbie survival kit, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit" I will send it to you asap.

my best tip would be to tell people to relax. there is a learning curve with this and you cannot be expected to learn it all in the first few months. Just do the best you can, stick with minimally processed, naturally gluten free foods at first until you get the hang of things. Don't panic if you don't feel better right away, in many people, the healing process takes a lot longer than your Dr.s will tell you. They will expect you to feel better within 3 months... this just isn't realistic. Minimum of at least 6 months, average of 2 years, and sometimes longer... but each step you take toward healing is a step in the right direction and it does get better!

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Can you tell that my job was in technical training before I started staying home? :P It just hit me last night that I just can't stop!!!! I'm so used to writing manuals and procedures and teaching classes that I don't know when to give it a rest. I hope all the old pros will add more info in. My post was just a start. thanks for those who have.

If anyone wants a list of kid foods, feel free to PM me. I have a list I keep on hand for my son.

Also wanted to remind new folks that you might also have trouble with dairy to begin with and have to eliminate that for a while too.

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Thank you all for your help! This is a wonderful thread. :D

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I am not even a month into this new journey of life. THANK you greatly for the supportive words as I am still in the panic mode. Almost afraid to put anything in my mouth. I love your list!

Thanks for sharing.

Dr.Mom

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Guest laferriere

Thank you so much for this- it's very helpful especially to those of us just learning and still frustrated. I always use cast iron. Gluten apparently sticks to this? For the lady who needs new lipstick, I researched and use Lancome "Rouge Absolu". It's expensive but very nice and worth the peace of mind for a "lipstick addict" like me!

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Thank you so much for this- it's very helpful especially to those of us just learning and still frustrated. I always use cast iron. Gluten apparently sticks to this? For the lady who needs new lipstick, I researched and use Lancome "Rouge Absolu". It's expensive but very nice and worth the peace of mind for a "lipstick addict" like me!

Cast iron is very poruous and traps food molecules. that's how it gets seasoned. I had been cooking gluten-free on mine for months before I knew this. The old fashioned way to clean cast iron is to burn it, but someone on here had the great suggestion of the self cleaning setting on the oven. Thanks for the lipstick tip.

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Thanks so much for posting this! I just now found it!

dionnek....which lipstick were you using that is NOT OK??

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Thanks so much for posting this! I just now found it!

dionnek....which lipstick were you using that is NOT OK??

It was Clinique lipstick - some of theirs are ok but almost all of the ones I had were not. Also one Maybelline (they wouldn't really say one way or the other, just sent me a list of ingredients and of course I didn't have the packaging anymore since I always throw that out right away (and am newly diagnosed so had bought the lipstick before even hearing about celiac), so I just decided to through out all maybelline lipstick and start fresh. Bought Nuetrogena now.

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Is this true about a cast iron pan and the self cleaning oven? Has anyone tried this that is very sensitive to gluten and had no negative effects?

I gave my pan to my daughter but would love to get it back.

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I'm sure this has been posted before, but sometimes I like to be away from my computer!!! and still want a resource. I found "gluten-free living for Dummies" and actually really find it helpful. (except for her rant about the caveman diet). She gives tips on everything from keeping your kitchen free of cross-contamination, the diagnostic process, recipes, eating out, dealing with manufacturers. I recommend it to all new people (and it probably could be helpful to veterans in some ways too!) (and I don't work for the company.)

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Really?? No envelopes!?? Would that include touching the backs of stamps as well??

I also beg to differ on some of the foods in these lists....the chips like doritos and lays...

a doc last night said not to have anything like that until your intestines are heal because the oil from the coats the intestines and makes it even ahrder for things to digest.....just my two cents.

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They will expect you to feel better within 3 months... this just isn't realistic. Minimum of at least 6 months, average of 2 years, and sometimes longer... but each step you take toward healing is a step in the right direction and it does get better!

I've read this so many times but once again it's so encouraging to hear again. I'm not even 3 months into it, and my digestive symptoms have mostly healed (yeah!!), but I just can't shake the malaise and fatigue. (I have to remind myself that Enterolab even says the anti-gluten antibodies stay in the system for 1-2 years after cutting out gluten, and you should expect symptoms for at least that long)

So to all newbies out there to reiterate, please do NOT lose hope! You WILL HEAL. Just take it ONE day at a time, even one MEAL at a time, and eventually this will all be behind you.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverence."

-James 1:2

Christian

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Don't panic if you don't feel better right away, in many people, the healing process takes a lot longer than your Dr.s will tell you. They will expect you to feel better within 3 months... this just isn't realistic. Minimum of at least 6 months, average of 2 years, and sometimes longer... but each step you take toward healing is a step in the right direction and it does get better!

Good to know. And good to read over again when feeling lost and frustrated, to help keep the hope that it WILL happen and that this is worth it! :)

And thanks TCA for taking time to make that list....great thread.

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Here's my 2 cents:

1. Be aware that (like any permanent, life-changeing event) a diagnosis of celiac can cause you to go into a tailspin. There's definitely a grieving process that goes on - denial, anger, and depression all take a turn before acceptance. And even after you feel like you've accepted things, every once in a while it will hit you and knock you over for a day or two. That's normal. If you can't seem to get through things on your own, try seeing a professional grief counselor. (I know that sounds funny . . . and you might feel funny going to a grief counselor because you lost your bread :D . . . but sometimes we can't handle things on our own. Especially at first.)

2. Sit down and make a list of all the things you CAN eat. Make sure it includes things you like to eat. We ate homemade tacos (with fried corn tortillas) almost once a week while I was growing up. We also ate homemade chili a lot, as well as spanish rice and chicken fried rice (with a soy sauce that just happens to be gluten-free), baked potatoes, and homemade burgers (which we never ate with buns). Maybe my mom "just liked" these things because (sub-consciously) she realized that they didn't make her feel funny. But the point is that she had already gravitated toward meals that were naturally gluten free, which made it much easier to compile a list of gluten-free menu items.

3. When you're ready to try baking something with replacement flours, start off with a recipe that's been tried by more than one person. Check out a gluten-free cookbook (like the Gluten Free Gourmet books by Bette Hagman) and read through all the "Tips" and information they include. Lots of people have been working on gluten-free baking for years now, and there's no sense in re-inventing the wheel! Once you've got the basics down, go ahead and experiment with modifying your own recipes . . . it will be easier to do this if you've already got an idea of how the gluten free flours act in other recipes.

4. Find a friend to cook with. It makes a big difference to have a cooking buddy . . . it makes the whole thing more of an adventure and less of a trial.

Hope these help!

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