Congratulations! You've just been diagnosed with Celiac Disease! What are you going to do next?
I'm going to Disneyland! Oh wait. Crud. I've gotta stop eating gluten.
When I was first diagnosed my doctor explained a little about what Celiac Disease was, told me that the only treatment was to cut wheat, barley, rye, and oats out of my diet, and gave me a few recommendations. Still, I felt really lost and just wanted somebody to take my hand and tell me what to do. If you are anything like me, you're probably feeling the same way and you don't know exactly where to start.
I decided I was going to write a letter to all those newly diagnosed with Celiac Disease or gluten intolerance and give copies to my doctor to hand out when he had a new patient. Then I realized a blog would be better, and easier to update.
So here it is, exactly what you should do to get started on your road to living Gluten Free. I'm not a professional, this is just what I did and what I've learned through trial and error.
1. Start a food diary.
Get a small notebook and write down everything you eat. Every little thing. Also write down how you're feeling. Here's my example (The food list is pretty accurate, but I just made up the symptoms. I feel good most days.):
The reason for a food diary is so that if you do have symptoms you can go back and see what you've eaten the days before. It will help you know what to leave out of your diet. For example, if you see that you tend to get cramps every day after you eat something you'll know that you should probably avoid that thing. People with Celiac Disease can also be sensitive to other kinds of foods. I can't handle too much high fructose corn syrup. If I have more than one soda I start getting cramps. I learned this from watching my food diary.
2. Read labels.
At this point you are going to feel incredibly overwhelmed. Gluten hides in some pretty devious places. I recommend getting a book that lists all the different names for wheat, barley, and rye. The book I got was Gluten Free Diet by Shelly Case it has a list inside of all the different names for products with gluten in them. An example is Malt Extract. It's made from barley. It isn't one of the allergens required by law to be listed on labels, so just reading the allergy alert isn't enough. Check the box of Rice Krispies, you'd think it's gluten free since it's a rice cereal. You'd be wrong. They use malt extract as a flavoring. That's Barley Malt Extract.
Another thing to watch for are things that have been manufactured in a facility that also makes products containing wheat. Avoid those things at first, and then slowly add them back into your diet one at a time. Some of those products I have a reaction to and with others I'm fine. Another reason why a food diary is so important.
3. Go on a very basic diet.
This is the worst part but it doesn't last long. I promise.
Eating gluten free is about adding things in slowly. In order to do that you have to basically start out with nothing suspicious. At first I ate a lot of salads with no dressing. It sucked. You'll need to eat only things that you know are absolutely safe. Head down to your local health food store and see what they have. Get some gluten free bread and some gluten free cereal. If you can afford it get a rice cooker. Buy a new toaster. They're cheap, and it's impossible to get all the crumbs out of the old one. Believe me, I tried.
Avoid as many processed foods as you can. Go for simple recipes with few ingredients.
4. Clean out your cupboards.
Even though less than half the people in my house have Celiac Disease, I got rid of all the wheat flours and baking mixes. The chances of cross contamination is too great. If I make cookies or a cake they'll be gluten free. We do have 'regular' bread and cereal, but I'm very careful when those are out to make sure that any crumbs get cleaned up. We have two toasters, a dedicated gluten free one and the old 'regular' toaster.
At my house we have two of a lot of things. Anything that needs a knife dipped into it has two versions. Peanut butter and margarine are a few examples. The gluten free stuff has a big "GF" written on the lid in permanent marker and the other stuff has a big "X" on it. Then there is no way that I can accidentally put the wrong cream cheese on my toast.
The peanut butter in my house.
If I can get something in a squeeze bottle instead of a jar I will. Jelly and mayo are easy to find. It might be a little more expensive than in a jar, but it is worth it for us. I only have so much fridge space after all.
5. Add new foods slowly.
This is where life starts to suck less. Now you get to start adding foods back into your diet. The key here is to go very slowly. No more than one new food a week. I know that sounds horrible, but there is a good reason. You have to watch for symptoms of a reaction. Personally I can eat something with gluten once and not really have much of a reaction. It's the second time that kills me. The first time is doing the damage, but the second time is when I feel it. Kind of like when you get a paper cut. The cut isn't so bad, but if you get lemon juice in that cut you really feel it.
Your body needs time to process the new food. If you have a reaction and you've only added one new food to your diet it's pretty easy to tell what is causing the upset. If you've added a bunch of new things it'll be really hard (if not impossible) to tell what it is that can't be tolerated.
This is another time when the food diary is important. Make sure you're writing down quantities too. Just like me and the high fructose corn syrup, we found out that my daughter can't handle large quantities of milk. She does okay with hard cheeses, but doesn't do well if she has more than a glass or two of milk a day.
6. Live your life!
This is all going to take some getting used to, I'm not going to lie to you. The good news is that you are going to start feeling better, life will be good again!
Do your research, be careful what you eat, but don't hole up in your house and refuse to join the world. I know it feels like you can't eat anything, but the gluten free diet is honestly not bad. New products are coming out every day, there are tons of easy recipes, and the best part is that you'll be healthy and feel better.
