Gluten Free Travel

Let me start by saying that road tripping on a gluten-free diet is challenging. Difficult. Hard. Not easy. Not fun. But it can be done.

Step 1: Plan ahead. Pack lots of your favorite gluten-free snacks in your backpack. Download the 'Gluten Free Me' app. Be prepared to cook a lot. When we travel, my family likes to explore new foods and new restaurants. We have a standing rule to not eat anywhere that we can eat at home. No chains. No fast food (except those rare times when Bill doesn't want to stop for a meal and wants to keep driving and get miles covered). We look for local hangouts, diners, local cuisine, and Mom&Pop places that are filled at lunchtime with a non-tourist crowd. We like to immerse ourselves in the local culture, both overseas and within the US.

Step 2: Know your standby go-to places where you know you can eat. Defying our no-chain rule, there are certain chains that are gluten-free friendly. Chipotle, Noodles and Company, and Mellow Mushroom are consistently edible. I wish I could say we never ate at these chains while traveling, but I would be lying. At least we ate them instead of giving up and eating my beloved wheat.

Step 3: Explore local grocery stores. My mom and I never tire of wandering, photographing, and picking out samples of local brands. We randomly found the most amazing little grocery store outside Glacier National Park. It was small. It was locally-owned. It was the most disorganized grocery store I've ever seen (Ummmmm, Hello? Do you really need 3 different freezer sections, 4 meat sections, and 2 dairy areas, none of them within sight of each other?) BUT it had the biggest selection of gluten-free foods I have seen anywhere, including halibut fish and chips, cinnamon rolls, and fresh breads and rolls. It was fabulous. I completely filled the refrigerator and freezer in the camper. I even met the owner while I was perusing the aisles, and was able to discuss the pros and cons of the various brands he carried. Amazing experience.

Step 4: Take the time to cook. Part of why we planned an RV trip and not a hotel-based vacation was so that we would have our kitchen with us. On days when we didn't need to cover a lot of territory and drive long distances, we had the time to cook. We grilled out. We made pancakes. We baked muffins and brownies. We ate cereal out of cups. We enjoyed just being together, sharing meals together as a family, 3 meals a day, with no TV or cell phone or schedules to distract us. It was glorious.

And lastly,
Step 5: Be flexible. Know that no matter how hard you search, you may still be stuck eating your protein bar and almonds for lunch while your family eats a sandwich. It's going to happen. Accept it now, and focus on the fact that you are exploring a new place that may become your new favorite place. Enjoy the ride, and thank God for creating such an amazing world for you to explore with the people you love most.

A Gluten-Free Update

I have now been living this gluten-free existence for 2 months. I still hate it. I still hurt. I still have headaches. I still have numbness and paresthesias (fancy word for nerve pains and tingling). I still have a pathetic immune system. BUT, on the bright side, I DO have a smaller body. I have lost 23 pounds. My pseudotumor is slowly improving. My energy level has improved a wee little bit, and I have found a few acceptable fake-flour substitutes.

So far, my family's favorite fake breads have included:
1. King Arthur Flour GF Muffin Mix - to make chocolate chip muffins
2. Pamela's Baking and Pancake Mixes - the best pancake mix we have found so far
3. Cup4Cup - a bagged all-purpose flour that literally lets you use your old recipes and substitute their fake flour mix for your old all-purpose flours. Thus far, this has been the most consistently successful flour mix. We have used it to make a fabulous chicken and sausage gumbo (a proper roux requires flour and oil), Disney Fort Wilderness and Wilderness Lodge cornbread, and other random family recipes. Nothing has failed yet with this mixture.
4. Duncan Hines GF Devil's Food Cake Mix - my 40th birthday was a few weeks ago, and a friend kindly made me an adapted version of her very yummy chocolate cake using this mix. The cake was shorter than usual, but it tasted just as good as it always has.

So there you have it - an official 2 month update. Nothing else has caught fire. I still dream about yeast rolls. My children still fuss about not having our old favorite frozen foods in the freezer, and I spend hours more in the kitchen than I ever have. But I am walking. I am not blind. And I think this new life just might work out.

Now to keep working on finding the perfect hamburger bun...

I've Lost My Mojo

I am a scrapbooker. I am a photographer. I document life. These are my hobbies. They make me very happy. But sometimes I have to walk away from it all. I have weeks and months where I can't stay away from my desk, and I can't stop creating. And then I have weeks and months like I have had recently. I have lots of new toys to play with. I'm always taking pictures of something or other (just find me on Instagram if you need proof of that). I am surrounded by inspiration online and in magazines and catalogs...but I just don't have the desire to create. This has happened before, and I know it will happen again. It frustrates me, because I WANT to want to create, but I don't. I avoid going upstairs to my desk. I pile my new toys on the stairs. I find other ways to occupy my time (I mean, hello! Have you ever seen me blog this much EVER???) I immerse myself in life.

I may not be actively creating, but I am still always learning. The last 6 weeks or so have been rough...total life upheaval rough. Immune system shutting down. Pseudotumor cerebri. Changing MS medications again. Having to give up my very-favorite food cold-turkey. Major life changes. I tell myself it's ok not to be crafting and 'making pretty stuff' (as Heidi Swapp calls it). I am reading. I am researching. I am studying. I am pulling out my med school textbooks for the first time in years. I am learning how to transition my life and my family's life to this new reality. I am trying to relearn how to cook (Think about it...how many of your go-to recipes require flour? I had to relearn how to make a roux and gumbo this weekend! I can't even go to a deli and get a sandwich or soup any more, because they both contain wheat. This has not been easy or fun.).

So that's where I am. Not crafting. Not recording memories. Not playing with paper and glue. Not giving up. I am going to fight this disease. My doctors said I have to give up wheat and gluten. I may hate it, and I may complain about it to anyone who will listen, but I'm going to do it, because if it works, then just maybe I'll have a functional immune system again. I may have lost my crafty mojo, but it will come back...just as soon as I find a good substitute for hamburger buns so I can enjoy a good red meat fix again.

Day to Day Change

Unfortunately for my family , this gluten-free lifestyle change affects them, too. We are a busy family. We homeschool. My husband works from home. We are always together - for better and for worse. To make sure our children do not become 'THOSE Homeschoolers' (you know the ones I mean - the cliché, grind your own grain, sew your own clothes, remove yourselves from society homeschoolers), we let them participate in several extracurricular activities. First and most importantly, we are active in our local church. Second, we are all active Girl Scouts (yes, even my husband). And third, we are active in sports, which I count as the Girls' PE. They average 1-2 hours of dance or softball 4-5 days per week.

This schedule does not allow for many home-cooked dinners around the table. We eat out a lot. Our main Family Meal is usually lunch, and dinner can be anything from a cup of cereal in the car to Moe's burritos or Chick-fil-a en route from ballet to Wednesday night services. It just depends on the day. All of this to say, not only has this gluten-free thing changed WHAT I can eat, it has also changed where and when we all eat.

So what are we doing? How are we handling this acute change? As best we can. I've given away most of my favorite baking mixes and go-to quick meals. I've stocked the pantry with just about every rice flour and potato flour and almond meal I can find, and I am slowly relearning how to cook. We are eating a lot more cereal for dinner, and my Girls are getting much better at fending for themselves. If I have a meeting or something else going on, my husband takes them to our favorite restaurants where I'm afraid I couldn't resist the yeasty goodness of the fresh baked bread. We are eating at home more. We are eating much later at night (you can still only do so much when everyone is gone from 4-7:30 every night). We are waiting for dance and ball to be over so that we can figure out a new schedule that works for all of us.

In the meantime, we are praying daily that this works and that my immune system decides to function and fight disease again. Because really? As much as I like bread, I like being not-sick and spending time with my family even more. Our God is a good God, and I truly believe He can do this for me. All I have to do is wait and hope. And if He decides to make me stay this way, I'll gripe and moan and complain for awhile, but then I'll suck it up and just deal.

Man Shall Not Live By Bread Alone...and Neither Shall I

After I saw the Heme/Onc (short for Hematology/Oncology) guy, I walked out the door not expecting to hear from him until my follow-up appointment in 6 months. It was lunchtime, and we were hungry, so my husband and I decided to grab a quick, yummy brunch of deliciousness at our local Waffle House. Their pecan waffles qualify for my select life list of very favorite foods. If I had known this would be my last time to ever have them, I probably would have ordered a dozen and eaten until I couldn't stand up any more.

Remember how I talked about Zebras and Interesting Patients the other day? Remember how I said you don't want to be one, but that I am one? Well...after I left my Heme/Onc appointment, my doctor spent some time researching what could be causing my immune system to shut down. He was unable to find a link between this and my MS, but he did find ONE STUDY being performed at BMS looking at a possible link between my particular immune problem and wheat allergies. Has this research been completed? No. Has this research been published in a reputable, peer-reviewed journal? No. IT'S STILL ONGOING, and there is no way to get me into the actual trial. So what does my hematologist decide? He wants me to try a wheat-free (aka gluten-free) diet. It will be our own, personal experiment. I literally felt Life As I Know It come crashing down around me.

I received this life-altering phone call around 4:30 on a Monday afternoon. I was not pleased. But God has a serious sense of humor. A very dear friend of mine has Celiac Disease, the only absolute medical indication for a gluten-free diet. Gluten-free can completely cure Celiac and eliminate its long term side effects. She has been gluten-free for several years and has been wanting me to experiment with the diet almost since the day she started it. Obviously, since bread is my very favorite food (I have literally lived on bread alone for months at a time while travelling overseas), I do not want to give it up. I like bread. Bread makes me happy. Anyhow, back to God's sense of humor...this friend was sitting next to me at my kitchen table when I got the call from my doctor. I instantly went into mourning. She became almost giddy with excitement.

After my initial shock and despair wore off, I went into my typical OCD, Type A mode. In the last 3 weeks and 4 days since I got this unpleasant news, I have read more books and cookbooks and websites and blogs on gluten-free cooking than I can count. I have dreamed about bread and pizza and fried chicken and yeast rolls and icing cake. I have fixated on finding acceptable substitutes for my favorite foods. So far, I have found a good pancake recipe, a decent oven-fried chicken recipe, and several awful bread recipes...complete with some flammable loaves. I'm a work in progress, and I know God has a plan for this. Right now, the risk of blindness and herniation and a nonexistent immune system are good motivators.