There are so many people who have just been diagnosed with Celiac Disease or Gluten Intolerance. It can be an overwhelming experience at first. Having a place to turn to or someone to answer your questions makes all the difference in the world. Since I have been answering a lot of questions about being Gluten Free (GF) I thought I would just put it all here on my blog.
First of all: What is Celiac Disease? How is it different from Gluten Intolerance?
Since others have stated it so much better than I, I am going to just include a few links that I found very helpful. At the begining it is really good to read all you can about your diagnosis. You need to understand what it is and how it affects your body. These sites discuss how to get diagnosed as well as tests to have once you have been diagnosed.
Celiac disease-Sprue This has great definitions, symptoms, getting diagnosed and other things.
celiac.com This site has some great resources. I used the list they have of foods that are safe to eat and ingredients that contain wheat. Whey is good even if it looks close to wheat. Things to look for, malt, licorice, and graham flour are BAD!
celiac.com This site has some great resources. I used the list they have of foods that are safe to eat and ingredients that contain wheat. Whey is good even if it looks close to wheat. Things to look for, malt, licorice, and graham flour are BAD!
Allergen Free Candy This was the best site I found for a list of allergens in candy. This is super helpful so that you know what should be safe to eat when you just want something sweet.
I also recommend this website: http://www.glutenfreeliving.com - check out the pages on ingredients and labeling. This magazine does its own excellent research and debunks a lot of myths.
Buy some books that talk about Celiac disease. My friend gave me some and they were really helpful. I just finished the book, Celiac Disease: A Guide to Living with Gluten Intolerance by Sylvia Llewelyn Bower. It was so helpful hearing about other peoples journeys to health. You are not alone.
Where do I find Gluten Free food?
You must find where to shop and where to find Gluten Free (GF) food in your area. The stores in my area (Northern California) that carry GF foods are Whole Foods (lots of baking things), Olivers (all their GF things have purple tags-very helpful), G&G Market (slightly cheaper), Safeway and Trader Joes (they have a print out of all their GF food).
Remember that all stores will have food you can eat. If you stay on the perimeter of the store most of this food is naturally GF. Dairy, meat, fruits and veggies are all naturally GF and you have a lot of choices in the whole food category. Most of the items in a regular store that are in the middle of the store will contain wheat. Stores that sell Gluten free foods will have them all grouped in one section and/or all over the store. They might have gluten free flour next to the wheat flour, GF crackers next to the regular crackers, ect. I have found that they keep the GF freezer items together for the most part. I always buy the frozen pizza crust (Udi's is good) and then have it in the freezer until I want a yummy pizza.
How do I set up my kitchen?
Remember that all stores will have food you can eat. If you stay on the perimeter of the store most of this food is naturally GF. Dairy, meat, fruits and veggies are all naturally GF and you have a lot of choices in the whole food category. Most of the items in a regular store that are in the middle of the store will contain wheat. Stores that sell Gluten free foods will have them all grouped in one section and/or all over the store. They might have gluten free flour next to the wheat flour, GF crackers next to the regular crackers, ect. I have found that they keep the GF freezer items together for the most part. I always buy the frozen pizza crust (Udi's is good) and then have it in the freezer until I want a yummy pizza.
How do I set up my kitchen?
Then you have to figure out how to safely set up your kitchen. You really need to read every single label on every single thing in the entire kitchen. I found out that the Pam spray (only one kind) had wheat in it. All soup will contain wheat. Soy sauce, ice cream, Nesquik and so much more contains wheat. Read everything. I found it helpful to have the list containing ingredients that were safe/not safe on hand during the initial purge.
If it says it was processed in a place that processes wheat, you can not eat it. It is contaminated (I found out the hard way.)
All shelves and all utensils that might have gotten contaminated with flour need to be washed down thoroughly. Basically, empty every drawer and wash everything. Flour gets every where and on everything.
Get rid of all wood and stone ware (unless you put tin foil over the stoneware first, like a pizza stone) plus any utensil with scratches in it. You can not get them clean.
Since my husband and my kids could still eat wheat, I kept some regular bread, crackers, pasta and snacks for them. I put all the things containing gluten in a separate shelf in the laundry room. It is way safer to get rid of all gluten flour and replace it with gluten free flour.
I got NEW plastic containers for the main flours that I use. I labeled them with a sharpie.
You will need a new cutting board that is used for all GF prep. You also need your own colander. Parchment paper is great since you can use it on your old cookie sheets and your food won’t be contaminated.
If it says it was processed in a place that processes wheat, you can not eat it. It is contaminated (I found out the hard way.)
All shelves and all utensils that might have gotten contaminated with flour need to be washed down thoroughly. Basically, empty every drawer and wash everything. Flour gets every where and on everything.
Get rid of all wood and stone ware (unless you put tin foil over the stoneware first, like a pizza stone) plus any utensil with scratches in it. You can not get them clean.
Since my husband and my kids could still eat wheat, I kept some regular bread, crackers, pasta and snacks for them. I put all the things containing gluten in a separate shelf in the laundry room. It is way safer to get rid of all gluten flour and replace it with gluten free flour.
I got NEW plastic containers for the main flours that I use. I labeled them with a sharpie.
You will need a new cutting board that is used for all GF prep. You also need your own colander. Parchment paper is great since you can use it on your old cookie sheets and your food won’t be contaminated.
Definitely get a new toaster pronto. A speck of wheat bread can set off the autoimmune response and you're getting more than that from the toaster. (I've heard a celiac researcher say that even a microscopic amount causes harm.)
Gluten can be washed off any smooth non-porous surface with soap and water. So smooth ceramic, glass, and metal should be fine. Non-stick surfaces are controversial -- some people say they are fine, others say no. Anything with a texture or scratches, nooks and crannies, etc. can be a problem because they can't be thoroughly cleaned (ceramic plates with raised designs, colanders, waffle iron, panini maker, scratched-up old teflon pans or griddles, spatulas. There aren't any hard guidelines for these things, but if you are having symptoms, err on the side of caution.
I pre-scrub gluten off of plates and utensils before they go in the dishwasher because my dishwasher is not 100% perfect at cleaning and I want to get big chunks off before they get "glued" on there.
You should have separate butter and condiments, or make sure everyone in the house is capable of not "double-dipping" when they spread mayo or peanut butter on bread. Only a clean knife should go in the jars, not one that's been used to spread something on wheat bread. Squeeze bottles are useful.
Products: Remember that "wheat-free" does not mean "gluten-free" because there are non-wheat sources of gluten (barley, rye and oats). Even "gluten-free" does not yet have a legal definition (the FDA is working on it), and a product labeled gluten-free can legally be so heavily cross-contaminated with gluten that it could make a person with celiac very sick. So especially in the beginning, you may want to choose products that have a certification label on them, that state they are tested to less than 20 ppm gluten (parts per million), or that are made in a dedicated gluten-free facility. So if it's a product you eat often, it's definitely worth it to call the company and see what their policy is. You can find out a lot by just the reaction of the person answering your call - do they understand what you are talking about, do they have a clear, prepared statement and policy? It's handy to keep a record of those responses because it's hard to keep them straight after the first few.
Remember that everything that goes on or in your mouth must be gluten-free, including vitamins, supplements, medicine, lipstick, communion wafers, etc. Non-food products are not covered by the food allergen labeling law (the Food Allergen Labeling and Consumer Protection Act of 2004) and so they can have wheat that is hidden. You do not need to worry about other personal care products (lotion, shampoo) because the gluten molecule is too big to go through the skin.
What do I eat now?
For all those that love their carbs, you have to find a good replacement. I tried so many of the gluten free flours out there. So many had a nasty after taste or weird texture. The bread that you can buy is very expensive and not that great. It is very dense and turns to mush easily. I have found an awesome flour that I use exclusively now. It is bought through the Maninis Gluten Free company. This is a great flour that is made from ancient grain. It looks like flour and tastes like flour. You can order it online at their website. This makes great home made bread. It is fluffy and soft, plus it's delicious. It is actually less than $3.00 a loaf and that includes the flour, shipping and handling, and other ingredients. It can be substituted in just about every recipe you have. I use regular recipes from Pinterest and my own recipes and they almost always turn out great.
Dryers and Bryers has wheat free ice cream. Stay away from ice cream that contains cookies or something that has wheat.
See's Candy is safe, but read on ALL other chocolate products, even Godiva.
All Boar's Head deli products are safe. I have found that most prepackaged deli meat is gluten free. Just read the label.
Xanthan Gum, corn starch, and guar gum are all good, they are thickeners.
We found an awesome pasta, Bionature, hard to tell the difference with the real thing.
Snacks that are safe: Most chips (no Doritos), watch the seasoning on some. Popcorn is great, pudding, Jello, and Cheetos.
We eat a lot of cheese.
BeKind bars are the best bars that I've found, Four Kind if you can find them there are really good too.
Dinner:
We eat a lot of tacos. Most of the corn tortillas are safe to eat. Just make sure they are not processed in a factory that uses wheat. I shred the left over chicken or pork that we had for dinner the previous night and use it for the tacos. This is normally what I eat for lunch when I am home.
Any meat, use individual seasonings, a lot of the premixed kind has wheat it in.
Mrs. Dash is safe and really good.
If you want a good side, cook up so cauliflower, mash it like potatoes and add butter, garlic, parmesan, with a bit of salt and pepper (it's healthier than potatoes).
We also substitute acorn squash and spaghetti squash a lot for pasta/starches. The Bionature Pasta is great. So is the Quinoa Pasta. I found that the rice noodles are gummy and not that great. Maninis makes a fresh pasta found in the refrigerator section. It is a really good pasta and tastes like wheat pasta.
Some good meals that make a leftovers, which are really nice for the week's lunches, dinners are stew, chili, chicken and rice packets, and baked chicken with veggies and potatoes.
Lettuce wraps are a great substitute for sandwiches.
Chex cereal (Rice and Corn chex) are gluten free. Some corn flakes are too. Rice Crispies makes a GF Rice Crispies.
All oatmeal is contaminated with wheat in the oat fields. Only buy the GF Oatmeal that has been grown in special fields and tested to make sure it is safe.
I always have rice cakes on hand. They are good with cream cheese or nut butters. I finally just bought the Costco size individual packs of cream cheese so that I could throw one in my lunch with a few rice cakes.
The pasta I mentioned above makes a great macaroni and cheese!
Energy Bites These are awesome! My girls absolutely love helping me make them and they love to eat them too. They are healthy little bites of oatmeal, nut butters, coconuts, craisons/raisons and any other add ins you want. Perfect for a snack or a substitute for a sandwich.
Brazillian Cheese Puffs Ok, these are the best thing ever!!!!!! They are little puffs of bread that is crunchy and salty and amazing. I make these 3-4 times a week for dinner. Every person that tastes them asks for the recipe. I don't mind not eating rolls if I can have these. 
Coconut Chocolate Pie This is one of the first pies I made when I was gluten free. I love that the pie crust is coconut. It is amazing and tastes just like a Mounds Bar.
Have fun experimenting with your meals and snacks. Just because you can't eat most of the fast food and processed food out there doesn't mean you have to eat nasty tasting stuff. I think I actually eat healthier and better food than I used to now. You'll start out with a handful of things and soon end up with tons of stuff that you know is safe to eat.
Please be aware that many chapsticks and lipsticks will contain gluten and can make you sick. Be aware that anything you put on your body(ie. lotion) and comes in contact with your hands and thereby your mouth can and will make you sick. Read all labels of everything!!
What do you do about the rest of the family?
I did get rid of all the gluten in the house that would be used in main meals. Since my family isn't gluten free, I have a section set aside for their snacks and pasta. I am very careful to clean up the table after they spread their gluteny crumbs all over it. I normally just put the washcloth straight into the washer after I know it has wheat on it. All the meals that I cook are gluten free and my family eats them along with me. There are times, like at breakfast, that I'll get my own meal while they eat wheat toast or cereal. You'll find what works for you.
Getting a Good Doctor
Find a good doctor that really listens to you and is doing all the tests to see that you are as healthy as you can be. My doctor didn’t do a biopsy and by the time I realized I should have had one it was too late. He didn’t do any tests to see if my body was deficient in vitamins or minerals and such. I finally found a great doctor that is doing all the tests to see where I am. She had a plan to follow up with me in three months with a biopsy to see if my intestines are healing. Ask around and find someone good. This is your life we are talking about.
How do I eat out safely?
Always take food with you if you don’t know they have something gluten free. I always carry BE Kind bars (these are really good!!) with me. I take a bar or fruit to church each Sunday since there is rarely something I can eat. Don’t be afraid to go places or have people over. I find it is much easier to have people over to my house. I can prepare safe food and once they learn how to make GF food, they can help bring stuff too.
I have figured out that all restaurants with a cook that is not professionally trained is a dangerous place to eat. I have gotten very, very sick even after asking a bunch of questions and getting something simple to prepare.
Places that have a professionally trained Chef will understand how to safely prepare your food. Applebees, Outback, Mary's Pizza and Flavor are four safe restaurants to go to in Santa Rosa. The Cheesecake Factory and PF Changs can easily make you GF amazing food. Always ask to speak to the manager about your food before ordering. They should know what is safe and what is not. Beware that most of the steaks (besides the very expensive ones) all come preseasoned and are contaminated with wheat. I find that I rarely eat out now and that I normally will try to do so on a night that I don't have to work, just in case I get sick afterword.
I love ice cream and have gone to most of the stores around here. The frozen yogurt places are great since there is no risk of contamination if it is GF to begin with. Cold Stone made me sick once when they mixed my ice cream on the counter used to mix other ice cream. If it says cake batter or that it contains cookies, it will have gluten in it.
Now What?
Dive into this head first with a smile. Things will be different but not bad. Your attitude will make all the difference in the world. Little by little you will find a bunch of people that live GF and it is like being part of your own special club. I thank God every day that I was diagnosed. I finally feel healthy and good. I don’t remember ever feeling this good. It is like a new lease on life for me and for you too. Embrace it and have fun with it. Experience the joy of having your first really good GF cookie or peice of bread. I get so excited when I find a new really great recipe.
About six moths after diagnosis you should ask your doctor about getting your antibodies rechecked (the tTg-IgA test) to make sure you are not accidentally consuming gluten. Thereafter, celiac experts recommend that your antibodies be checked annually. You may want to ask about annual thyroid testing and getting a bone density check. Most celiacs have low bone density at diagnosis. It's good to see a nutritionist. A registered dietitian is best, if you have access to one, and ask about getting tested to see how you are absorbing vitamins and minerals.
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