Wednesday, January 13, 2016

Eating to Live: A Gluten Free Road Trip Across the United States

A Brief History:
In January of 2014 I became very ill with varied and vast neurological, dermatological, and GI symptoms. As we sought to determine the cause of my illness, my symptoms increased and I became completely debilitated. The medical tests I underwent in Kampala (the capital of Uganda where my family and I serve as missionaries) were inconclusive. After several painful months, a medical doctor suggested that I may be reacting to some type of allergy (or allergies).

Over the next months I began an extensive elimination protocol that included diet and topical products. Nothing had positive effect until I removed gluten from my diet.

I didn’t even know what gluten was at the time but all of a sudden I was studying and reading and needing to get gluten out of my system because that diet was helping me function again.

In the months that followed we discovered many other food allergies and intolerances. Little by little my health improved as we adjusted my diet to continue a positive progression towards wellness.

Now, two years later, my diet is  gluten, soy, dairy, sugar and nightshade free.

I have not yet received the concrete answers that I long for in the medical world, but we will continue to move into further understanding of my illness and, even more importantly, how to manage it well.

In the summer of 2015, with only one year of restricted diet in my experience, our family flew to the United States to travel (by road) from Florida to Oregon over the time span of four months. This travel time would be our family’s furlough which meant we would be guests in other people’s homes many times and reliant on commercial restaurants to provide our meals when we weren’t with friends or family. I would not have my own kitchen for many months. With such a restricted diet and no experience with American resources in regards to that diet, our furlough schedule seemed like an impossible task.

It kind of was, as a matter of fact.

But we did it. And as I have gleaned much from others’ experience while learning to eat a whole new way, I hope to pay it forward with this post, sharing what I encountered and learned as I ate a restricted diet in a vagabond lifestyle. For those of you who also have a restricted diet and are traveling in the United States, I hope this can be helpful.

The Supplies—One Time Purchases
*Two coolers. One larger one for the bulk of cold groceries and one smaller one to hold my daily lunch and snacks.
 *One box with cookware. I bought a set of Tools of the Trade Stainless steel pans at Macy’s. The set has smaller sizes that compacted easily. My set also had stainless steel utensils. A similar set is here.
*Two sharp knives (I prefer Henckel knives)
*One plastic measuring cup
*Small cutting board
*Two mason jars w/lids
*Hot pads, dish towels and dish rags.
(Red is my color. At home where I share my kitchen with gluten eaters, all of my kitchen supplies are red. As we traveled I kept this same system. My hot pads, dish towels and dish rags are red. This alerts my family when they see a red item that they should not use it in the vicinity of gluten.)

My Grocery List:
 Grass fed ground meat
Free-range chicken
Applegate Bacon
Soy free eggs
Gluten free Oats
Microwaveable rice (packets, bowls or Boil in a Bag)
Prepackaged mixed veggies (carrots, broccoli & cauliflower)
So Delicious Unsweetened Cultured Coconut Milk
Udi’s Granola
Lara Bars
Olive oil
Maple Syrup B Grade
Sweet potatoes
Goat Cheese
Rice Cakes (Lundberg Thin Stackers)
Sea Salt
Black peppercorns with grinder
Coconut Aminos

Udis Pizza Base
St Dalfour Jam
Suja Essentials Organic Juice: I like Mango Magic and Carrot Crush
Against the Grain frozen pizza with Pesto and cheese (this one has dairy so I could never finish a whole pizza—two pieces was my limit-- but when I wanted some sort of new and different, this product fit the bill for me.)
Bottled Water
Ziploc bags—1 box gallon size; 1 box quart size
Ziploc Zip n Steam Cooking Bags
Aluminum Foil
Dishwashing soap—I did best with Seventh Generation Natural Soap
Plastic forks, knives and spoons
Paper plates, bowls, napkins and paper towels

How I did it:

I used plastic utensils and disposable plates and bowls. This was actually a VERY valuable facet of my supply. Nothing about my food was easy, but having safe, clean plates and utensils that I could simply throw away without washing was a gift I appreciated every time.

Bottled water was another very important thing for me. Faucet handles are touched often. I was more healthy when I used water from my own bottles—not because of the water but because there were fewer hands contacting the supply and thus fewer chances for accidental cross contamination. In my own kitchen at home this can be managed with everyone’s help. But as a visitor in other people’s homes it was not practical to ask our gracious hosts to live in such a meticulous way.

I chose several packable/freezable menu options and I kept it VERY simple. I did not veer away from the master list after our initial weeks in Florida. Once I knew the products that did not make me ill I stuck to them. Traveling did not allow me the privilege of experimenting. Many wanted to add to my very plain repertoire but change held great risk for me. I did not want to be sick while traveling and I did not want to be sick during the very few weeks I had with my family and friends. Simple and basic was my best choice.

Before we spent days in the car I would:
*boil 8-10 eggs
*saute’ 1 pound grass fed ground meat in olive oil with onions and garlic then freeze in Ziploc bags
*boil a whole chicken with onions, garlic and fresh cilantro or basil, debone and freeze chicken meat in Ziploc bags
*fry one or two packages of Applegate Bacon

We chose hotels across the country that had microwaves and refrigerators. I carried one glass microwaveable bowl (medium size) and would microwave my evening meals and breakfasts. When we stayed with friends and family I would use the oven for GF pizza or baked sweet potatoes and restock my meat supply if needed.

Car snacks/lunch:
I layered my fruit of choice and cultured coconut milk in a mason jar and added granola as I ate it for a snack in the car.
Lara bars
Goat cheese and rice cakes
Soy free boiled eggs with Applegate bacon
Apple slices

Dinner and Breakfast Menu:
Microwaveable rice with grass fed ground meat topped with chopped avocado.
Baked sweet potatoes topped with cooked chicken and goat cheese
Microwaveable rice, steamed veggies (seasoned with Coconut Aminos) and chicken 
Udis pizza base with olive oil, black pepper, ground meat or chicken, fresh basil leaves, and goat cheese (best when I had access to an oven but in a pinch I could microwave this too)
Soy free eggs scrambled or fried when I had access to a kitchen.
Oatmeal with bananas

Restaurants that Worked:
Outback Steakhouse—we chose this establishment when I was in need of a solid meal while traveling. We ate at many Outback restaurants across the country. They advertise their gluten free offerings and the staff consistently took my orders seriously. I always ordered the petit sirloin with no seasoning, cooked on foil (grills cross-contaminate) with a side of steamed broccoli and a baked sweet potato dry.  I recommend speaking to the manager when ordering. I ended up talking to them anyway when the steak wasn’t prepared correctly, so starting with them helped tremendously.

Chipotle—due to my extreme restrictions there was not much on the menu that would work for me when it was all said and done but the staff of every single Chipotle was FANTASTIC. So kind. So thorough. At least one member of the serving line knew every ingredient in each dish.  (No nightshades=no Mexican food. Please feel free to spend a moment in silence over that horrific loss. Thank you.;))

Noodles and Company Clackamas Town Center, Portland Oregon—This was a surprise for me! I accompanied my husband to this restaurant and had no intention of eating, but the staff was so in tune with safe food prep for allergies and intolerances, I decided to try. I chose every ingredient individually (they had several gluten free noodle options),  they cooked my dish separate from others in a stainless steel pan and I was served with such grace and kindness. Amazing service and a fast food dish that did not make me sick at all.

Bonefish Grill Pompano Beach, Florida—Kind service and thorough staff. I spoke to the chef on each visit and my food was exactly to order.

Andina’s Portland, Oregon—Fabulous food for our entire party and very kind concerning my restrictions. A wonderful experience!

Living 360 Organics LLC Midland, Texas:  I was encouraged by a visit with the owner of this establishment who generously talked me through the menu and showed me where we could change or eliminate unhealthy-for-me ingredients. I enjoyed smoothies here on several occasions.

Fit2Go Midland, Texas: Jeff and I happened upon this place and I enjoyed one of their wonderful packaged meals but the best part was conversation with the owner/manager.  He understood my restricted diet experience and the moment of sharing about cooking this new way made me cry sweet tears as I left. My husband and I were very encouraged by the personal care this business offered. If I lived in West Texas I would utilize the Fit2Go products often. (They offer pre-cooked and packaged organic meals that you buy and microwave at home or at your office.)

Most helpful:

*Folks who allowed me to take care of my own food, but graciously fed my family. When generous kind people cooked for me, I often became ill. I also get sick when I cook sometimes too, but I can confine the variables when I do it and more readily pinpoint the problems (and avoid them in the future).

*Gift cards to Sprouts, Natural Grocers and Whole foods. We never knew which store we would find in a given town but each are spendy and the gift cards helped SO much.

My favorite of the stores was Sprouts (less expensive in my experience.) I shopped at Natural Grocers the most and enjoyed the experience every time. Whole Foods was awesome but so expensive. The staff of every one of the stores I visited was extraordinary. May be silly, but in those stores I felt ‘among my people’ and I met much encouragement.

*Fridge space for me alone. This was not always possible, but my food was most safe in its own fridge. This happened at both of our parents’ homes and I did best in that situation.  (We certainly did not expect this in any of the places where we stayed, but where it was offered I can now look back and see a positive difference.)

Most difficult:

*Communicating accurately what foods others could buy and prepare for me. There were several important reasons why a secure list was elusive. First I was brand new to America’s resources specific to my diet. I couldn’t tell others something I did not know for myself yet. I was trying many things for the first time and I would learn about the products as I used them. Sometimes I initially felt a product did well for me but found over time that certain ingredients were causing problems (carrageenan is in so many GF products and it causes very bad reaction for me) I hated to ask folks to spend such big bucks on products I might not be able to eat by the time I reached them. Secondly, my restrictions also involve prep spaces and equipment. The consideration of those issues is mind boggling. If someone purchases a safe product but cooks it in an unsafe pan (cast iron, non scratch surfaces etc) or even sets it on an unsafe service (kitchen cabinet with bread crumbs) I can still get sick.  I have picked up gluten from silverware drawers, faucets and handles on the oven and fridge. Shared kitchens really cannot be completely safe. I am so new to all of this myself I cannot direct others successfully. And it seemed unreasonable to ask someone else to attempt a task I have not yet mastered or even understood completely.

*Ordering with such precise detail in restaurants and sending food back when it was not safe for me. Did you know that managers and chefs will come to your table when you send your food back? I did not know this and I do not enjoy the attention all of that entails. When I was desperate for protein and food, I had to do this in order to get something I could eat. But Jeff and the boys ate my food often when I couldn’t face the whole ‘send the food back’ thing.

*Offending others by not eating when gathered for a meal. Some said it outright and others refrained from comment but we knew as a family that I sometimes caused offense by my dietary constraints. This brought me MUCH stress and grief. The last thing I ever want to do is offend or deny a hospitable offering in my direction. My heart broke every time.

*I found as we traveled that I approached most meals already sick. I felt ill most days of our furlough. I could function but I was actively working to keep the most debilitating issues at bay. This was very discouraging as we were all working so hard to keep me well.

*Coping with the ‘surely a little won’t hurt you’ mentality. The gluten protein itself stays in your system for several days but the antibodies that cause damage have a half-life of up to three to four months according to Dr. Peter Osborne from the Gluten Free Society. Healing a system already damaged by gluten can take months to years depending on the person. So if your system is healing from gluten ingestion already and you ingest more on top of that, you are lengthening and inhibiting the healing process. The negative effects build up. The only way to be away from gluten is to completely remove it for an extended time. Soy, sugar and nightshades are the same for me in that even ‘a little bit’ can cause painful and complicated problems. Dairy is the only component that I can exercise some freedom with. The occasional gluten free yogurt or cheese is okay. But only in small quantities.

What I would do differently next time: (aka Why it’s important to listen to my husband:))

*Buy the Yeti cooler Jeff suggested. I lost some (very expensive!) food along the way because the blue ice thawed or hotel fridges were subpar.  

*Print and laminate cards with my specific dietary needs. There are pre-printed cards here. But Jeff suggested making my own, so that in restaurants I can hand the card to the wait staff and chef. I’m doing this now.

*Get our own furlough house with my own kitchen and have all my friends and family come to me;)

Overall, I am very proud of myself. I pushed into extremely challenging spaces and regrouped and continued on when I became overwhelmed.

I met love and concern everywhere. I am so grateful for every caring, patient friend and family member that listened, sympathized and prayed with me over this very long stretch of travel. My life is rich with amazing people.

And in those few places where I was judged with disdain or contempt for being so fastidious, I offer a deep prayer that they will never understand what I am dealing with. May they eat all they want with abandon always. I wouldn’t wish this stuff on anyone.  

I had so many comments on how I looked as we traveled across the US. I was both praised and disdained for my weight. Sometimes in the same sentence. I’m not sure what to say about that exactly, except that its occurrence was notable. Appearance and weight command much attention. And while we can all talk a mature game that there is not ONE way to look, our most popular visuals train to honoring one size over others.

Here’s the thing-- I am sick. And that is the reason for my current weight. I’m not so sure that my personal weight loss should be held up as something for others to attain to, especially considering how it came about. Sustaining good health is my goal right now. For me, this is what my best health looks like. But maybe not forever. (Listen, if sugar stops debilitating me and my body reconciles with gluten and nightshades it will be salsa, chips and ice cream for days! Also fajitas.)

Somehow, I would love to learn better words and ways to encourage those I speak with. Complementing anyone on their loss of weight also mildly insinuates that any weight gain is negative. I do not want to contribute to that whole quagmire of defeat.

There is SO much that is beautiful in each person, right now, and size is not the determining mark of character or value. I want to see and speak to that beauty and strength in people I encounter before I speak of the physical attributes I see. I need to do this when I look in the mirror too. If I don’t rehearse delight in myself with more pounds, I won't  be consistently free of self criticism with less pounds. It’s a heart and soul thing. At least this has been my experience.

A last, very loving, word:
I have the best husband and kiddos in the world.
My diet has changed many things for them too especially as we traveled.
Thank you Jeff, Kinley, Alex, Isaac, and Silas--
*for your patience as I checked out of moments we are used to being family time on furlough (meals in fun restaurants)
*for allowing me hours to peruse Whole Foods products
*for driving extra miles on unknown roads and freeways to find stores that had safe food for me (after already driving SO VERY MANY miles to reach our day’s destination)
*for making yourself dizzy reading product labels to find safe things for me to eat
*for celebrating every tasty treat I uncovered
*for loading and unloading all my extra cooking and food supplies
*and for comforting me when the smell of Rosa’s Fajitas made me cry.
I love all of you so incredibly much!

Bonus info unrelated to travel:
My favorite Gluten Free Personal Care Products
This is still in process for me. I have tried several brands, but most often I am dissatisfied with the scents.  I’m still on the hunt for sweet smelling products but some that have been great are:

Andalou Naturals Aloe Mint Body Lotion

Andalou Naturals Clarifying face moisturizer and overnight repair cream

Andalou Naturals Age Defying Shampoo and Conditioner (the smell is not bad or good, but the product has been great for my hair)

Red Apple Lipstick—this product and service is unmatched in my experience so far. Very personal, kind and thorough and the products make me smile every time.  I have four lipsticks (Berry Blast, Gypsy Soul, Beachside and Rallye Balm),  one lip gloss (Magic Momint) and I love their mascara too. I highly recommend this company!

 Afterglow Makeup—expensive but I reacted badly to the less expensive options (Bare Minerals works for so many!)

Many blessings to all who made it through this lengthy read!
And to those coping with a restricted diet, Steady On.
May you meet mercy and caring help more often than not and may you have the good humor and grace to endure when you don’t.
Peace and healing to you all!

(No one is paying me for my recommendations here. Just offering my humble opinions!)


Barbara said...

Good morning, Cheryl! Just read your blog post. Thank you so much for sharing your journey into a new way of eating. Not to wish such restrictions on anyone, but for someone newly diagnosed with similar allergies and intolerances, you story would be so very valuable.

I am going to share your post with a young man who, until recently, was living on the streets. He has Celiac's Disease. Even the tiniest amount of gluten makes him break out in itchy sores all over his body. He is now in the discipleship recovery program at Hiway 80 Rescue Mission in Longview and is doing much better. He is definitely able to make wiser choices about what he eats. And, the Glenwood ladies' bible class has been helping to supplement his diet with gluten free items purchased specifically for him. He too is learning as he goes along--trial and error as some brands of items that say "gluten free" still cause him reactions.

Thank you for the recent picture of your beautiful family and for the warm note.
Much love,

P.S. Hugs to all the Cashlings!!!

Sherilyn said...

I read every word! You will help many people with your sharing. My heart goes out to you in this battle and I pray for you daily. I don't even pretend to know or understand what you are going through but I DO know how difficult it is to not be able to eat even a few items such as lettuce and numerous fresh, uncooked fruits and veggies, among other normally healthy things. I have felt like a misfit on many occasions when these items were offered at a meal and I had to say "no, thank you". I have been (nicely?) ridiculed for my choice not to eat the foods that cause pain and illness in my body. It's almost like they think I don't eat those foods because I don't like the taste, even when I explain the problems they cause for me. I have found that the person is more understanding and will back off faster if I simply say "I am allergic to lettuce (or cabbage or apples or oranges or whatever is being offered at the time). And the "weight thing" is a whole issue in itself!!! Whoa!! I won't even go into that on here except to remind people that weight should not be mentioned. Just keep your observations and comments to yourself! Thank you! Terrible comments were made to me when I was over my recommended weight. Now that I've lost 63 lbs in the last 7 years, the comments have changed but are still hurtful. "I just can't get over how good you look!" (So I looked horrible before?). Haven't you lost enough weight? You aren't going to lose any more, I hope! (So I look that bad now?!) (My appropriate weight is between me and my doctor and if she says I need to lose more, I will......12 more pounds!) Anyway, I say all of that to say that I pray for you daily as you make this journey to hopefully better health. Hang in there! You are doing a great job. The light has come back on in your eyes and I'm so thankful for that! You are beautiful regardless of your physical weight.
Love and hugs, Mom

Anonymous said...

I just read your blog and you are such a brave person to attempt all you have to do to keep yourself healthy! I have type 2 diabetes and read labels but don't have to avoid a lot of the things you have to avoid. Makes my label reading easier-carbs, sugars and protein. We each must do what is best for our bodies and we are all different. As you have found out, cutting certain things alleviates a lot of problems and it is worth not having some things to feel better and function as you want to-sorry about the Mexican food. You are so blessed by your family who help you in many ways to find what you can/can't eat. I have people say "Oh, you can't eat sugar"-well I can but it is in controlled portions, knowing my blood sugars and what I have already eaten that day. They say "A little won't hurt"-well it can under certain circumstances. After I lost 30 lb. people to me it was time to stop loosing weight-my body found its weight and it keeps me healthy. God bless you on this journey as you take care of yourself so you can spread the Good News.