Thinking about going gluten free?

A lot of people have been asking me if the gluten free diet is right for them.  Their doctor may have recommended it or they just don't feel great.  Here's my advice and nuggets of knowledge for people before venturing into the gluten free diet, a gluten free introduction before Gluten Free 101, so to speak.  Remember: I am not a doctor or nutritionist.  I am a very well read gluten free blogger with a Bachelor's degree in Theatre and Creative Writing who is passionate about helping people.  I literally read every book the Chicago Public Library had on gluten free within my first three months on the diet.  My gluten free diet started in June 2010.  I have been lactose free since spring 2009.

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.

https://pinterest.com/windycitycookin/

https://www.facebook.com/WindyCityCooking

@windycitycookin

What advice would you give to someone considering a gluten free diet?  Anything you wish someone told you before you started?

Again?

I had an absolutely lovely Easter with my family: made gfdf chocolate chip pancakes (Bob's Red Mill) with a side of bacon for breakfast, had a turkey sandwich (Udi's whole grain bread) with veggies for lunch with my dad's side of the family, and had a fruit smoothie (mixed by my younger sister) and lamb, asparagus, fruit salad, and spinach salad with my mom's side of the family. Everything I ate was delicious and I survived another holiday without a gluten reaction! (I got sick somehow during Thanksgiving.) I was riding my wave of confidence with the food and made myself a single serving of leftovers to take to work the next day for lunch.

Someone once told me that I was lucky that I was gluten intolerant and didn't have Celiac disease - my reactions were less serious, she said.

I happily ate my spinach salad with lamb for lunch (I'm currently addicted to spinach...). About fifteen minutes after I finished eating (so about forty five minutes after my first bite), I started getting cramps. A few minutes later I started overheating and ran to the bathroom. I kept trying to convince myself it was only cramps, but then an onslaught of my classic gluten symptoms came back: dizziness, overheating, abdominal pain, "bathroom issues", nausea, chest pain, extreme body pain and fatigue, loss of color in my face, and more. I told my bosses I was going home. The simple "gluten" reasoning paired with my change in appearance sufficed. When glutenized, it is really easy to look at me and see something is horribly wrong -
I barely even recognize myself in the mirror. I somehow managed to gather my things and hail a cab. The whole ride home, I was writhing in pain. I was so uncomfortable in my skin and was debating just getting out of the cab because of the pain, but an ounce of common sense kicked in and decided that being miles from home on Lake Shore Drive was a bad idea. I was blacking out and fading in and out during my ride home. After somehow managing to get to my room (my arms started tingling like they fell asleep), I curled in a ball and was nearly crying from the pain. I eventually uncurled and took some ibuprofen and tried to make myself comfortable with a heating pad in an upright position. My body temperature couldn't regulate, so I was alternating between two pairs of socks and wrapped in a blanket to pushing the blanket away and rolling up my pajama pants. About ten tall glasses of water, many trips to the bathroom, and several bad daytime tv shows and movies later, I was feeling better. My appetite was gone and I felt dehydrated, but my gluten hangover symptoms were showing signs of fading and I was asleep by 8:30.

I had a horrible and violent reaction. Without eating gluten. I somehow fell victim probably the smallest trace amount of cross-contamination from my leftovers.

At times, I crave wheat. I think it won't be so bad - I could survive the pain. But every reaction I have had since going gluten-free, the reactions are more severe than ever before.

Last year, I had a few similar situations. It took me a while to put together that all the days I stopped for a bagel for breakfast, I made the familiar trip into my boss's office to say I was going home sick. Not eating breakfast was always able to get me through the day back then. Nowadays, a few of my co-workers only know me gluten-free. They never saw me with the drained face or the pained and panicked expression that was all too common before. Obviously, they were concerned. The next day, I was back to my go-get-em self and felt alive. My appetite still isn't back, so I am trying to listen to my body and whatever it craves (gluten and dairy free, of course), it gets.

I'm extremely thankful to be gluten free, but I could really do without the reminders of how drastically my life has changed since a year ago when my gluten reactions were at their most severe!

Sick

I've been quiet here because I've got sick.

Two years ago, I always made 2-3 pounds of meatballs at a time. They were one of the few things I knew how to make and they are one of the easiest things to freeze and defrost. I'm still in the habit of making meatballs like this. I'm a busy girl and being gluten and lactose intolerant, I need the convenience of already cooked food in the freezer. After making the two pounds of meatballs and eating three with gluten-free noodles, dairy-free Teeze, and organic cherry tomatoes, I started to feel sick. Not wanting two pounds of meatballs to go to waste (because surely I did not glutenize myself), I figured I would have some more meatballs with lunch the next day.

Total Crash.

I felt nauseous, had chest, stomach, and abdominal issues and felt utterly exhausted. Having meatballs for dinner and lunch the next day brought my body to a grinding halt. It took me five days to recover. And on day five, I had a migraine. The second one since going gluten free (compare that to the four to eight migraines I had a month on average the past two years). I lost two pounds and I could feel my body was weak (maybe because part of my gluten reactions mean I have NO appetite so eat about a third of what I normally do). And then I got the common cold. I made chicken broth that became a simple chicken and rice soup (I made the rice with broth rather than water). I have been drinking an insane amount of juice and water and I even ate an entire box of gluten free crackers in one sitting. I'm finally starting to feel better now.

But what did me in? I used an onion spice mixture that was made in the same facility as wheat. Every other ingredient had been tried and tested in my gluten free kitchen. I even made chili with the ground beef with no gluten reactions. Moral of the story? I need to be more careful with "same facility as" products. I am extremely sensitive. I have had great luck when going out to eat at restaurants with my friends. It is rather embarrassing to get sick in my own kitchen.

Gluten Hangovers

Hangovers suck. But gluten hangovers? Hundreds of times worse! I have had a few gluten hangovers from being accidentally glutenized. Deli meat. Italian sausage. Oats in hamburgers I had in freezer. Twice.

There's really nothing I can do besides stop eating whatever caused the reaction and wait. The next several hours, I am on the verge of vomiting, so I just stop eating for the rest of the day. The day after I have gluten, I probably have less than 500 calories. It is a very unhealthy practice, but juice and gluten-free crackers are the only things I can stomach during that time. And then I lose two pounds that will take another month to gain back. My appetite usually fully returns by day three and then I make up for lost time.

One of my gluten-free friends was glutenized over the weekend. We were sending e-mails back and forth and I realized that there's nothing I can do or can offer him. Drink plenty of fluids? Eat what your body wants? Rest? Take it easy? Throw some inspirational quotes out there? This too shall pass. Or: If you are going through hell, keep going. I think that advice is identical to a traditional alcohol-induced hangover.

What gluten hangover tricks help you?