Trust your gut. Literally. Listen to your body. Do you need to take a nap after eating a piece of bread? Are you sent into the a fit of stomach cramps after a cupcake? Are things "unusual" in the bathroom after a bite of wheat? What symptoms do you have? Write everything down. Even the stuff that you don't think matters - everything in your body is all connected. It does matter. Everyone's symptoms are different.
Know thyself. Are you okay with going on a gluten free diet for the rest of your life without a confirmed diagnosis of Celiac Disease? I had the following tests done and my results were always negative: blood work, stool testing, upper endoscopy, colonoscopy, and allergy testing (skin testing). The only test left was the gene testing. By the time my doctor suggested it (a new one at this point - I saw four gastros in less than two years), I knew I needed to be on a gluten free diet and was rocking it for over a year and a half. She stressed to me the for the rest of your life part. "Forever is a long time at your age." (I'm 27 years young.) Honestly, the only thing a positive gene test would change would be to require all my paternal relatives to get tested as well since it is likely from my Italian side of the family. If the test were negative, I would still eat a gluten free diet. It cost thousands of dollars to figure out that I did not have Celiac Disease and only one week on a gluten free diet to realize that it solved all of my problems. (I started the diet on Monday and by Friday was back to normal. For more on how the gluten free diet flipped the light switch in my body, check out this NBC clip: http://www.nbcchicago.com/news/health/Gluten-Free-Diets-Help-More-Than-Just-Celiac-Patients-110238099.html) For me, I spent so much time, effort, agony and money and was literally wasting away. I had nothing else to try but a gluten free diet. It saved my life. I'm stubborn enough to stick with something and am passionate enough to do all the research and whatever it takes to keep my body going in a positive direction. Officially, my gastro wrote down "gluten intolerant" in my chart. I later found that there was a fancier name for it: NCGI - Non Celiac Gluten Intolerance. Yes, you can have gluten intolerance without Celiac Disease. The treatment is the same. The diagnostic tools aren't defined yet. Here's my simple test: do you feel better off gluten? If yes, then stay off it!!!
Remember: you need to be eating gluten if you want to have your doctor run tests! Do not start a gluten free diet unless you are okay with never having an official test done to confirm your diagnosis.
No cheating. When I told my dad that I was going to be gluten free, he asked if I could have a roll with dinner if I was gluten free all week. Nope. Not even a bread crumb. My reactions were pretty mild when I was cross-contaminated or ate the wrong food (why in the world would people put malt in cereal?) my first few weeks of going gluten free. After that, my reactions got more severe. Now, if I am glutenized, I miss a day of work, spend five days having my body recover, lose two pounds and get either a cold or migraine (my immune system goes into hibernation after a reaction...) My mildest gluten hangover is much worse than my worst alcohol induced hangover. I can't try a piece of my brother's wedding cake next month - not even a sliver. And when that bread basket goes around the table, I lean back in my chair and let people pass it over me so I don't touch it.
Have a "last meal". My original expirement was going to be one week off gluten, one week on gluten, then report to my doctor how I felt. It turns out that I felt so great off gluten that I didn't want to go back on. I knew I needed to try it again to make sure that no other factor triggered the radical change in my body. I only made it one meal on gluten. My "last meal" was ravioli from Whole Foods (finding some that were dairy free was a royal pain two years ago) and a (soy) ice cream sandwich. After that in June 2010, I never consciously ate gluten again. For me, it immensely helped to be emotionally ready to move to a life without gluten. Most of the time, I enjoy the diet. The negative feelings I have tend to have (and they are rare, but worth noting so you don't think the diet is all sunshine, rainbows and frosted cupcakes) are rejected (going to a party without anything but a glass of wine to eat), annoyed (why the bleep did you put gluten in this food?), sad (I'll never eat Jimmy John's again), and nervous (concerned about safe food options at unknown events).
Eating isn't as spontaneous. You will become a label sleuth. Gluten free means more than just wheat free. You need to be free of malt, barley, rye and most oats. Oats make the list due to cross contamination issues since they often share the same fields and equipment as wheat. Did you know that beer and soy sauce contain gluten? Did you know that companies like Bard's Beer and San-J offer even better alternatives than the original variety? When dining out, I use restaurant cards to inform my server and chef of my food intolerances. Almost all of my meals outside the comfort of my kitchen have been fantastic! Check out some tips and tricks on dinning out.
Gluten is everywhere! In your lipstick, shampoos, and even medicine! (Gluten and lactose are often binders on medicine - lactose is especially common. If you are considering a gluten free diet, call the manufacturer and ask if the product if gluten free. There's nothing worse than a raging headache made worse by ingesting gluten.) Companies are being much more proactive about labeling things as gluten free every year. At my dentist, the fluoride they used said "gluten free" right on the front!
You'll eat healthier. That's not to say that you'll stop eating bread, cupcakes, donuts, and cookies. There are plenty of those out there - and they taste wonderful! But they are pricey so you'll find yourself reaching more for fruit to satisfy your sweet tooth. I increased my vegetable intake a crazy amount after going gluten free. Diets like the paleo diet are great for meal inspiration. Paleo is also known as the caveman diet - so you eat what our foremothers and fathers could hunt and gather. It is naturally dairy and gluten free!
You'll try new foods. Have you ever tried millet before? Tastes great! (Yes, Mom, this is the same grain that you feed your bird. But mine is cooked!) I love using brown rice flour for coating chicken - it has much more flavor than wheat flour. The diet had me trying new things - like summer squash! (I know, not a radical thing for most people, but I never tried it before going gf.)
You'll be part of a growing community. When I first figured out I had NCGI, I felt like an impostor. Could I go to Celiac events and meetings? Was I any less gluten intolerant than other people since that had a biopsy test they could point to? The answer is no. No matter how you found out or what your doctor says, you can proudly wear the gluten free label. I am the co-leader of the Chicago chapter of the Gluten Intolerance Group. I "like" a lot of companies on Facebook and stay up-to-date with their latest products - and even snag some coupons! This week, I have pizza plans with two other gluten free gals. My life isn't slowing down on a gluten free diet!
You'll get crafty in the kitchen. There are so many recipes to try! With the convenience of fast food taken away, I learned how to cook great tasting meals. I normally cook 4-6 servings at a time and freeze the leftovers in individual portions so I can have homemade frozen meals at my fingertips. I work over 50 hours a week and have time to work, cook, clean, and enjoy my life! If I can do it - any one can! (I was a horrible cook before going gluten free - but an amazing baker. Now I can proudly wear my chef's hat and my baking apron in the kitchen.)
You'll use social media in new ways. I have a blog, facebook page, pinterest account and twitter account...in addition to a social media-free day job! It can be a lot, but I feel fantastic and inspired being part of this larger community.
What advice would you give to someone considering a gluten free diet? Anything you wish someone told you before you started?