Well readers, just one week after college graduation, a time when I saw no hints of storms on the horizon, the river called life hit an unexpected rough patch.
My master plan had gone off perfectly so far. The graduation festivities were beautiful. The delicious leftovers were almost gone and Mom and I had driven Granny safely back home to Indiana. All that was left was some blood tests ordered by my primary physician and my pediatric endocrinologist. The plan was that the doctors would quickly glance over my blood tests and then send me on my merry way in to the adult world with a clean bill of health. My pituitary problems that resulted from my brain tumor were well-managed, and although I hadn’t been making the healthiest eating choices amidst the stress of finishing college, I was still thin and even amidst stress, made far healthier choices than I did in high school. Given that, and just the fact that every other facet of my master plan had gone off without a hitch, I just didn’t expect this plan to go off script. But it did.
So on Wednesday May 23, just as I was finishing my breakfast and settling in to another lazy worry-free day, the phone rang. It was my physician who noticed that my liver enzymes were slightly elevated, and that I was anemic. I wasn’t surprised or concerned about the anemia. The summer after second grade when I had a big growth spurt and basically wouldn’t eat anything healthy, I became severely anemic to the point where I could barely function. I was sleepy all the time, had no appetite and when I started third grade, I was so skinny it frightened the teachers. With some medication adjustments and force-feeding, I returned to a healthy weight and felt well again. I don’t remember hearing anything more about my iron levels for years. Maybe it wasn’t tested or maybe it was tested and reported on my medical charts, but since I felt well and was gradually eating a much more balanced diet by middle school, nobody felt it was worth mentioning to me. Then in the fall of my sophomore year of college, the glands in my neck swelled up and got really painful seemingly overnight which had never happened to me before, so my parents wanted to get me to the doctor right away. But my primary physician wasn’t available, so the receptionist set me up with a different doctor in the same building. This doctor was amazingly thorough. In addition to the usual look at my throat and feeling of my glands, he also ordered a blood test to check for Mono, and iron I guess too, because he called me personally later that afternoon and told me I was mildly anemic. Like I said, by then I was feeling great and eating a very healthy diet, so I just made an effort to eat more high-iron foods like beef and spinach and didn’t think anything of it. Maybe I was just prone to being a little anemic.
But elevated liver enzymes? That was a new one. How could I have liver problems? I tried one sip of whine, at my brother’s insistence shortly after my 21st birthday, but it was so disgusting I spit most of it out. I don’t abuse painkillers either. Those were the only things I knew of that can cause liver problems. In a panic, Mom and I consulted the internet, but couldn’t find anything reliable or applicable to me so we decided it would be better to wait for the results of some more detailed bloodwork and a liver ultrasound ordered by the doctor. So Mom immediately scheduled an ultrasound for June 6, and took me in for the additional tests.
Then like clockwork on June 5, just after finishing breakfast, the phone rang again.
“Your blood results show indications of Celiac disease,” the doctor said, “It is a disease where your body cannot tolerate gluten, which just means you will have to give up wheat.”
She is a young and very compassionate doctor, and perhaps in an effort to soften the blow, she said “There are lots of foods that are gluten-free. I think even Snickers bars are gluten-free.” I laughed politely, because I do love snickers bars, but still my heart sank, and I apologize if it sounds overly dramatic, but I will be honest and say I felt my gluten abundant life flash before my eyes. What would become of our Christmas cookies, my dad’s quiche, my mom’s family-famous fluffy waffles, my double-layer chocolate birthday cake I look forward to all year, our Friday night pizzas, our comforting lunches of grilled cheese sandwiches or macaroni and cheese?
Mom and I had decided to have this conversation on speaker phone, and I will always carry with me the image of us sitting side by side on the couch with the phone between us. When she saw my expression fall, she tapped me on the shoulder and whispered enthusiastically “that’ll be so easy!”
“Yeah right,” I wanted to say, “don’t you realize how central a role bread products play in our family?”
“I worked with a lady who was gluten-free, and she brought the most fabulous cakes to work,” Mom said when she got off the phone.
“That’s great. But I cannot live on Snickers bars and cake. What are we going to do for actual meals?”
“There are all kinds of gluten-free breads and pastas made with other kinds of flour like rice and corn. And, some of your favorite meals like steak and baked potatoes? Naturally gluten-free!”
This is true. In my shock and panic, I overreacted and interpreted the diagnosis to mean I would never be able to eat anything delicious again, but when I found out I could still eat steak, a baked potato loaded with butter, sour cream, salt and pepper or even my dad’s amazing spicy spaghetti sauce over gluten-free noodles, I started to feel better. Maybe Mom was right and it would be easy.
And then I found some more information on websites for Mayo Clinic and the Celiac Foundation that had my heart sinking again. To start with, going gluten-free wasn’t as simple as just giving up the obvious wheat products like bread and pasta. Other grains like barley and rye also contain gluten, and products like sauces and salad dressings that don’t taste as if they would have gluten in them could be thickened with wheat. Some companies are transparent about gluten in their products, but others disguise it. In a Betty Crocker book on how to get started with a gluten-free diet, there is a huge list of unpronounceable additives that contain gluten. But the real kicker was when I learned that even trace amounts of gluten can be harmful, so people with Celiac even have to watch out for cross-contamination, meaning that if even a crumb of wheat touches a gluten-free item, it is no longer safe for people with Celiac to eat. In practical terms, this means that those warnings on food packages for items which seem like they would be gluten-free like Quaker oats which say “processed in a facility that also processes wheat,” must also be avoided by people with Celiac. And gone would be the days when I could just walk in to a restaurant and order anything I wanted. Fortunately, more and more restaurants offer gluten-free options these days, but people with Celiac are advised not to blindly trust even these items, because if the staff in the kitchen handles your chicken with the same gloves used to prepare bread items, your gluten-free meal has now been contaminated. And let’s say a restaurant says their caesar salad is gluten-free so long as you order it with no croutons. If the restaurant makes a mistake and brings your salad with croutons on top, people with Celiac cannot just pick off the croutons because it is impossible to remove every last trace of crouton crumbs. People with Celiac are supposed to send the salad back and ask for a fresh salad without croutons. Since customers aren’t allowed back in the kitchen to oversee preparation, people with Celiac are supposed to ask to speak with the manager or chef, inform them that they have Celiac and explain how food must be prepared. Actually, the most polite thing to do is plan ahead and call the restaurant to give them a heads up and find out if they can accommodate you, and try to go to the restaurant at a slower time of day.
I wanted to cry as it occurred to me that (a) our family, especially my dad and grandma, loves to go out to eat on weekends, the busiest time; (b) sometimes we plan ahead, but other times, my parents like to just drive around and pick new places to try spur of the moment; (c) most of our family likes to keep our order simple, and we get all embarrassed just when my sister with no dietary restrictions makes a complicated order with substitutes and everything. Dietary restrictions which would require the manager coming out to talk to me would be far worse. And (d), we have all watched too many of those “dirty secrets of restaurants” shows where waiters admit spitting in people’s food when they send it back, and as a result, we never, ever, send food back. Well, my dad has once or twice, but when he did, I remember us all getting nervous and giving him a “what are you thinking?” lecture. And let’s say I ever got in a situation where a restaurant doesn’t like dogs but has to grudgingly serve Gilbert and me because of the ADA laws, AND at the same restaurant I also have to send back a contaminated salad. That could be the perfect recipe for spit (or worse) in my food.
Did I also mention that this disease is about more than just a little stomach upset (which I never had by the way)? I had more subtle symptoms like frequent headaches and fatigue which I always overlooked. In people with Celiac, gluten destroys the villi which are the carpet-like fibers in the small intestine that absorb nutrients from the food we eat. The only treatment is a gluten-free diet for life. Left untreated, Celiac can lead to liver damage (which I was just beginning to have), and scarier stuff like cancer. If you follow a strict gluten-free diet for life, all sources said the small intestine would heal, but if you stray, even on Christmas, your birthday, your wedding day, damage begins again. I have even heard that after being gluten-free, the body overreacts to gluten, so one speck of gluten can set the healing back three months or more. I remember logging off the internet and coming out of my room somberly for a drink of water, sure that the carefree life I had been so looking forward to after graduation would be hellish now.
But unbeknownst to me, while I was upstairs researching with my computer, Mom was downstairs doing research of her own. That’s when she found out that Celiac runs in families! I won’t get in to the details, but she said that her and Dad, my siblings and two of my aunts had the classic symptoms. Even if they got tested and didn’t officially have Celiac, my parents both promised they would go gluten-free with me because even if gluten hasn’t caused damage for them, they are definitely sensitive to it. And there was a high probability that other members of the family would test positive for Celiac as well, so by us going gluten-free, we could be a positive influence for the rest of the family. Even if they weren’t sensitive, it warmed my heart when they said they would go gluten-free anyway because we are a family and families suffer together. But since they are sensitive, that was a moot point. Although it didn’t eliminate my anxiety about future social situations, not by a long shot, you cannot imagine the euphoria of finding out you won’t be navigating these rough uncharted waters alone.
Even so, I wasn’t eager to go gluten-free immediately. The good news was the doctor said I should still enjoy my glorious gluten (well, those weren’t her exact words but that’s how I interpreted them), until I saw a gastroenterologist who knew more about celiac and could do a more definitive test, a biopsy of my small intestine, the only way to diagnose Celiac with absolute certainty.
The soonest my mom could get me in to a specialist was July 18, but I thought I might still be able to eat gluten even after that because the biopsy is a procedure that involves sedation, not like a blood test that can be done same-day. (If I had been allowed to schedule the appointment, I would have gone with the doctor who couldn’t see me until September). But instead of the carefree blogging I had intended to do, I found myself spending the next six weeks obsessively reading up on Celiac disease, perusing blogs and Facebook pages for information and coping advice, and of course saying yes to gluten every chance I got. I am sure I gained weight those six weeks as I loaded up on ice cream cones, ravioli, Papa Murphy’s pizza (at my insistence even when it was way too hot to be using the oven), as well as items I loved but wasn’t sure about like my favorite caesar salad dressing and store bought guacamole. In my paranoia, I was sure I would find out that everything I loved had gluten lurking in it.
All too soon, it was July 18, and I had a foreboding feeling that I was sitting down to my last piece of peanut butter toast made with oat nut bread, and I was right.
The doctor’s first words when she entered the exam room were “you definitely have Celiac. We looked at your blood tests and there is no question.” I guess there is some antibody that my physician didn’t know as much about that confirms Celiac if it is elevated and my levels were off the charts. She still wanted to do a biopsy to see how much damage had been done, but when we asked if we should wait and have the biopsy before going gluten-free, she basically said “are you crazy? No, you should start going gluten-free now.”
At my insistence, Mom and I went to Chipotle after the doctor’s appointment where for my last gluten meal, I ordered one of their amazing burritos, made on a flour tortilla of course. It was the one thing I hadn’t had the chance to get one more time in that six-week period. When we got home, I savored a Blue Bunny ice cream cone, and dug out one more of my sister’s fantastic chocolate chip cookies which she made for my graduation. And then it was time to resign myself to the necessity of leaving the familiar river I loved and accept the newer, healthier route.