Thursday, May 24, 2012

South Dakota: Traveling with Celiac Disease

In SD with the boys.  After 5 years of being their roadie, 
they finally let me on stage!

Four days before leaving for South Dakota with the boys, I found out that I had Celiac Disease.  What is a gal supposed to eat if your only options are gas station and fast food?  Here are a few tips that helped me while road tripping with 4 guys to South Dakota:

1.  Do your homework. When first starting your gluten free diet, research restaurants you frequently go to and find out what gluten free items they  have to offer.  I also downloaded The Gluten Free Guide To Fast Food onto my e-reader, which provided me a list of foods I could eat at some popular fast food restaurants. This e-book was a great help for those quick eating stops. There are also many apps to download.  Find Me Gluten Free is one of my favorites.

2.  Think ahead.  Plan ahead.  I knew there would be times where I wouldn't be able to eat what the boys were eating.  Many exits only have a few restaurants to choose from.  Stops such as Subway, McDonalds, and Quiznos don't offer a wide variety of gluten free foods to choose from, and I couldn't expect them to stop at Wendy's every time so that I could get a baked potato.  To help prevent the "I can't eat anything, but I'm so hungry, I hate being gluten free, I'm crying, and now I've made a scene" meltdown, I packed a cooler with lean lunch meat, string cheese, strawberries, and GF bread to make sandwiches and a quick picnic type meal.  I also brought heat and eat rice cups, applesauce, GF protein bars, apples, peanut butter, and GF cereal.  All foods that are easy to pack and easy to prepare in the back of a 13 passenger van.

3. Don't be shy- Request GF meals from the caterer.  The boys were playing for a weekend youth retreat at a hotel/conference center.  The conference center was providing three out of the five meals.  The two meals not provided were pizza and KFC.  (That's where my picnic lunches came in.)  Soon after we arrived at the hotel, I called the front desk and was able to speak with the chef who then told me the items on the breakfast menu that were gluten free and also offered to prepare me a meal that was GF.  They were so much more helpful than I thought they would be.  I felt silly asking him if he could read the ingredients listed on the sausage box, but he was very patient and understood my needs.

4.  Use this opportunity to educate others.  When being diagnosed, I didn't want to be labeled "one of those people."  You know, the one who makes a scene at restaurants because they have to tell the waitress EXACTLY how to prepare their food.  Or the ones who freak out if a crouton even slightly touches their salad.  Well, I have come to the conclusion that I will be "one of those people", but this is also a great opportunity to educate others that Celiac Disease isn't an allergy, eating gluten free isn't just a trendy diet I'm trying out, but that it is a real autoimmune disease that can potentially lead to life threatening diseases if not treated.

I hope these tips help you as they helped me on my travels with the boys.

No More Mama's Noodles?????

For years I've had tummy trouble.  Ulcers starting in 8th grade, caused by cheerleading try-outs, piano recitals, pharmacology, and nursing boards.  Then since high school, I have always felt bloated, had stomach cramps, heartburn, and would get sick in the middle of the night for no reason.  It finally came to the point where I would tell Andrew my stomach hurt, in which he would respond, "What's new?"  (Thanks, for the sympathy pal!)   He really did feel bad for me and encouraged me to see the doctor.  If you know a nurse, who have come to realize that we are the worst patients.  So I waited a few more years.

After I had diagnosed myself with gallbladder trouble, IBS, chronic appendicitis, and many other diseases, I went to a wonderful gastrointerologist.  After telling him my GI history, he asked me if I had ever been tested for Celiac Disease.  I had been to a GI doctor when I was in high school and remembered him doing some nuclear test that looked for an egg shaped something, I had had 2 upper GI tests, but I didn't think I had been tested for celiac.  He ordered some blood tests and told me he'd call with results in a week.  After a week of waiting and looking up what Celiac Disease was (an auto-immune disorder where the body attacks the small intestine if gluten (a protein found in wheat, barley, and rye) is ingested, resulting in malnourishment, GI discomfort, and can ultimately lead to cancer), I received the call at work that I had tested positive.  Normal is below 20, moderate chance is 21-30, almost positively for sure you have it is >30.  Mine was 72.  The nurse told me to go ahead with my normal diet and scheduled an EGD for the next week..   My first thought: "But what about Mama's noodles and rolls?  And Monical's pizza?"  I immediately texted my praying friends and family with a text that read, "Please say a prayer.  I tested positive for Celiac Disease.  Please pray that it is a false positive so that I can still eat my mama's noodles.  Thanks."  Maybe a little bit of a selfish prayer, but you haven't had my mama's noodles!   My second thought: "I'm going to eat anything and everything that has wheat until my EGD when they give me the for sure positive."  I gained 3 or 4 pounds in those two weeks of waiting.  I ate cookies, pizza, pasta, breadsticks, cake, etc.  I also had some belly aches those two weeks.  My third thought: "I can't cry.  I'm at work.  I have 6 patients to take care of and some blood to hang."  That week, I had also taken care of a 19 year old with newly diagnosed crohn's disease and was going for his first colectomy, a 24 year old with a small bowel obstruction and colectomy, and a 50 year old man with a colostomy related to an intestinal disorder.  Celiac disease would not be the end of the world.

The day finally came when the office called said it was a for sure.  Start a gluten free diet today.  (I was actually on my way to get chicken noodle soup and a bread stick.  I ended up getting a chicken salad)  And this is where my story begins.....The Life of a Band Wife....Who Happens to Have Celiac Disease.