One quick Dude Note: For those that don’t follow me on Facebook, I had a bit of a scare this weekend. Intense chest pain that landed me in ER. All tests came back negative. Good times. For those that sent me messages of support, thank you!!!!
I love being a celiac advocate for many reasons, but emails like the below are at the top of the list. So cool that people feel comfortable enough with me to send me their celiac stories. And this one is nothing short of exceptional.
It is a soldier’s struggle with his health and than even more of a struggle after a celiac diagnosis. His main message? “Don’t Give Up and Don’t Give In.
It’s a bit of a long read but I encourage you to stick with it. Enjoy.
I’ve been meaning to put this on paper for a long time. It’s a little wordy, but maybe you or some of your readers may find it of use. It’s a little summary of my experience with diagnosis of celiac disease while serving in an Army that didn’t know what it was or care if a Soldier had it. You are the first person I am sharing this with. You have my permission to use any portion of it you want, if you choose.
A Celiac Soldier’s Story
I have celiac disease. I’m sick and tired of being sick and tired, and have been for about 15 years. I was officially diagnosed in South Korea while serving with the United States Army during the summer of 2013. The struggle continues as I write this narrative, but eventually I’m going to defeat my foe. I have to win this battle because if I don’t, celiac disease will tell its good friends cancer, diabetes, Hashimoto’s, osteoporosis and all their friends to pay me a visit as well. I have concerns that some of them are either knocking at my door now, or have already moved in, but that’s a topic for another time.
My earliest recollection of significant digestive problems is from about the year 2000. I didn’t go to the doctor at that time, but looking back, I can see clearly that the real trouble started brewing around then.
The first time I actually walked into a doctor’s office to complain about stomach pain and an irritable bowel was at Fort Drum, NY while serving in a light infantry unit for the 10th Mountain Division. It was particularly tough to make that first visit because Soldiers aren’t supposed to get sick, ever. Not only are you supposed to be completely immune to anything that could be construed as a weakness, but if you do have to go to the unit medical station for some reason, you must have prior written approval from about four levels of leadership, and it’s not a very discrete process. Before you are even allowed to walk into a doctor’s office, you have to convince your supervisor that you are truly ill, as well as his or her supervisor, his or her supervisor, and well, you get the point. Celiac disease and its associated symptoms can be embarrassing for many people, so the military is an especially uncomfortable place to experience its wrath.
The first visit was a short one, as are most visits to a military medical facility. I should say the time spent with the doctor was short, the wait wasn’t. Military doctors don’t play around; they don’t have time to. I was asked what the matter was, and I responded that my stomach hurt way more often than it should, and that I had frequent diarrhea. The doctor pressed on my stomach a few times, then told me to drop my pants and bend over. I thought that seemed a bit aggressive, as we had just met, and I had never been probed in that manner before, but as I mentioned before, I was sick and tired of being sick and tired, so I complied. I will not go into detail about that process, but I will say that it was the most awkward experience I’d ever had in a doctor’s office until that point in my life. (I would later learn that a prostate exam is pretty mild compared to a colonoscopy and endoscopy.) After that it was off to the lab for some blood work. I have no idea what I was tested for, and I never heard another word about it.
I made a few more visits to military doctors over the next ten years, complaining of the same old stuff – abdominal pain, diarrhea, fatigue and nausea – problems some of you are all too familiar with. I was only able to see military doctors because, well, I was in the military and that’s just how it works. Needless to say, every visit was the same. The doctor pressed on my stomach, sent me to the lab, for what I never knew, and I never heard back. I did provide a stool sample once or twice, but of course that didn’t seem to matter either.
Fast forward to the spring of 2013. I was stationed at Camp Casey, Korea. It was a rough year physically and mentally, the roughest of my life. Celiac disease was raging like a wildfire out of control in my body, and I was crippled with pain almost around the clock. I had suddenly developed high blood pressure, my thyroid levels were ping-ponging up and down, I had developed migraines (which I will honestly admit I had thought were a product of one’s imagination), and I was gaining weight for no apparent reason. I know that a lot of people with celiac disease suffer from extreme weight loss, but this was not my experience.
I think it’s interesting to note that one of the primary factors in receiving my formal diagnosis was actually my rank with the Army at that time. You see, as a younger and lower ranking Soldier, it is much tougher to get appropriate medical attention because of all the levels of approval you have to get for appointments. But by this time I had three combat deployments to Afghanistan and Iraq under my belt, three years served as a Drill Sergeant, numerous military awards and decorations including the Bronze Star, Purple Heart, Army Commendation Medal (a few of these), Army Achievement Medal (a few of these) and the Army Good Conduct Medal (a few of these) as well as numerous others. The point here isn’t to brag about military achievements. The point is that I was respected enough by my senior leaders that I could just tell them I was going to the doctor, they would sign off on my papers, and off I would go. Unfortunately, lower ranking Soldiers don’t have such an easy road. This is something I hope will change over time.
It was after a few visits to have my blood pressure taken that I received an unexpected phone call. A little angel was about to enter my life. I don’t know if it was divine intervention, pure luck, or just a higher level of competency in the 2nd Infantry Division’s medical community, but I received a call out of the blue from Major Edward Bahk, Brigade Surgeon for the 210th Field Artillery Brigade. He must have either received some correspondence from another doctor I had seen at the unit, or stumbled across some test results while checking on the medical staff he oversaw at the time. Whatever it was, he wanted to see me. He could’ve easily avoided making contact with me, as I was none the wiser, but as time would tell, he was a fine Army Officer, a talented physician, and more importantly, a great human being.
Major Bahk simply told me that from here on out, he was appointing himself as my primary care physician. I was to run every little detail of my medical care though him, and he gave me his personal cell phone number to call him whenever I saw fit. Anyone who knows anything about the military would know that this is a highly irregular arrangement. One could easily draw similar comparisons to a traditional civilian medical situation. The doctor’s boss’s boss doesn’t just randomly call a patient from their cell phone and offer this type of scenario.
Over the next few months I personally ensured that the folks at Camp Casey’s Troop Medical Clinic laboratory had plenty of work. I submitted repeated urine and stool samples, and gave up at least 50 vials of blood. Having suffered from low blood sugar all of my life, I got used to passing out as they drained the blood from my body. I became a regular that the staff all knew. When I walked in for my daily or weekly blood tests, I would bring a Snickers Bar with me and ask for a can of Coke before they even got started. The problem was that I had to fast the night before the blood tests, so my blood sugar would be extremely low, and that made me prone to passing out as the blood left my system. As I started to feel woozy I would attempt to get the Snickers Bar or Coke down my throat to get my blood sugar up rapidly, but it never worked. I woke up a few times after passing out to find myself slumped over in the chair with chocolate drooled down my face, or a can of Coke spilled on the floor. Notch up another instance of humiliation for this celiac. I was used to it, and so where the lab technicians. I’m not even sure why they allowed me to attempt this futile strategy, probably because they needed a good laugh.
One sunny August afternoon, Major Bahk called me into his office to go over my medical records, as we had done a few times before. He sat me down next to his computer to show me lists of lab results, most of which I didn’t understand, but if he was talking, I was listening. He would actually sit there going back and forth from the computer screen to a collection of medical books he kept in his office. I recall the first day he mentioned me getting a celiac panel. I had never heard the word before, but he explained his reasoning and I said I could get to the lab the next morning.
Within a week of providing another six or seven vials of blood, Major Bahk called me back in to show me his computer screen again. It was reassuring seeing his name show up on my cell phone’s caller ID, but it also caused a little anxiety when he said he needed to see me. I headed over to his office right away. I pulled up a chair at his desk, and he pointed to an entry in a long database of lab results that displayed the word “celiac” with a few other terms, and some letters representing results. He told me the result was positive, but it was his next words that really caught me off guard, and gave me a bit of a scare. I needed a colonoscopy and endoscopy to confirm the blood test results. I’ve been blown up and shot at (I have shrapnel in my leg as a souvenir) more than a few times during my trips to the Middle East, but somehow that all seemed easier than getting a colonoscopy or endoscopy. What was an endoscopy anyway?
Camp Casey didn’t have the facilities for the procedures, so I had to go to a South Korean civilian hospital. That was an experience in itself. I will say that the staff there seemed highly competent, and there were a few people who spoke English there to help me, but it added to my stress never the less.
For those who have never had a colonoscopy, the night before the procedure provides lots of fun and excitement. Naturally, the colon has to be completely clean to allow the camera to see properly, and in my case perform multiple biopsies. The way this is accomplished is by drinking a whole bunch of a delicious cocktail provided by the pharmacy. The mixture I was provided actually didn’t taste too bad – it was sort of like lemon flavored Kool-Aid, but the challenge isn’t the taste, it’s the quantity. I was instructed to drink two gallons of the mixture before midnight the evening before the big day. Suffice to say that the mixture is quite effective at cleansing your system. If this should ever be your fate, my recommendation would be to set up a small table in your bathroom, plug in your cell phone and laptop, then sit back and enjoy the ride. It’s going to be a long ride, so you might as well sit back and log onto glutendude.com, start learning, and get to know your new friends. You’re going to need (1.) the knowledge, (2.) the support, and maybe most importantly (3.) the sense of humor.
One of the complications of my situation was that I had to conduct the cleansing operation in the Army barracks (a super small one room apartment with a shared bathroom), then wake up extra early to take a series of buses and taxis to the South Korean hospital which was a few hours away through heavy traffic, and with no stops along the way. I was actually advised by the gastroenterologist to wear an adult diaper and bring a few pairs of extra underwear and pants. Did I mention the humiliation in the life of a celiac? Luckily, I made so many trips to the bathroom the night before that I had literally nothing left in me the next morning. I earned high praise from the doctor performing the procedure the next day, in fact. She told me that I had one of the cleanest colons she had ever had the pleasure of viewing. I told her I simply did as I was instructed and drank every ounce of my two gallon cleansing cocktail. When I told her that, she gave me a somewhat confused look, then burst into laughter along with the operating room technicians. I asked her what was so funny, and she explained that “nobody ever drinks the whole two gallons – we only give patients that much in the hopes that they will drink half of it.” Wonderful.
The procedure went as well as could be expected. I had read accounts of some pain and abdominal discomfort in the days following, but the only issue I had was a little bit of a sore throat from the endoscopy. When I woke up, I asked the gal performing the surgery how I did. She remarked that I had gagged quite a bit during the endoscopy portion of the procedure. I said, “Well of course I gagged a lot, you rammed a giant wand down my throat half way to my stomach!” I didn’t get the same laugh from her as she got from me when I told her I drank the full two gallons of colon cleansing yumminess.
It didn’t take long after my trip to Seoul St. Mary’s Hospital to get the official word from Major Bahk. I had celiac disease. To make things worse, I was about to find out that the Army had no idea what to do with a Soldier diagnosed with celiac disease. They had protocol for everything else, just not celiac disease. As amazing as Major Bahk had been in getting the answers to my health problems, he was not a gastroenterologist, and he had performed his duty. I had an official answer to all of the problems I had struggled with for well over a decade. Now what?
For the next few days, I spent every waking moment on the internet looking for answers. What is celiac disease? What is gluten? Where is gluten? Where isn’t gluten? I wish I could say I wasn’t still trying to answer parts of those questions to this day.
I’ll never forget my first grocery shopping trip after diagnosis. I went to the single option that I had – the Camp Casey Commissary (the on-post grocery store). It was about the size of a Walgreens or Rite Aid. I spent a full hour pacing up and down the few aisles that were there, reading every label on the food items from top to bottom, googling every ingredient, and left the store with absolutely nothing. I had spent the better half of a decade training to be a physically and mentally tough, invincible infantry warrior, and I almost had an anxiety attack and burst into tears trying to buy something to make for dinner. Not only was I basically clueless about what I was looking for, but I was not compensated by the military to purchase my own groceries. Like other Soldiers stationed in South Korea without any family there, I had a food allowance automatically (forcefully) deducted from my paycheck so I could eat at the dining facilities on post. This was not optional, celiac disease or not. I learned quickly that using the word “gluten” when trying to select my food choices was pointless, let alone the word “celiac.”
After some research, I found out that a high level commander could authorize a Soldier to receive their food allowance in their paycheck and not have it forcefully deducted. That way I could potentially have the money to buy gluten free groceries. Of course I wasn’t surprised to find out that “Colonel So and So” did not authorize Soldiers to receive their food allowance very often, and either way it was a very long process that had to go through multiple levels of the chain of command. So what am I supposed to eat in the mean time? And how do I pay for it? What happens if I have to go on a training exercise and I can’t get to a grocery store? “Celi-what? Never heard of it. Get out of my office.” Not the Army’s problem apparently.
For the next few months, I fought the same battle every other person with celiac disease or gluten sensitivity does. I made enough mistakes that it didn’t matter whether I successfully ate an actual gluten free meal or not. I continued to be just as constantly sick as I had always been, the difference was that now I knew why, I just didn’t know how to fix it. It became easy to understand why some people just give up and choose to enjoy all the foods they want, and just deal with the pain and misery that comes with it.
The one good thing I had going for me was that I was at the end of my military journey, and was scheduled to officially separate from the Army and return to my home in the United States very soon. I had lived the Army life traveling the world training and fighting for so long, all the while unknowingly with celiac disease, but at least there was a light at the end of the tunnel.
I’ve been in the U.S. since October of 2013. I maintain a gluten free home as well as I can, based on the information available. I still make an occasional mistake, but it’s not for lack of education. When a celiac makes a mistake, it’s usually because they trust another person or another company that says they understand. But almost every time, they don’t understand. Somehow, the celiac is made to feel like they are just an inconvenience to everyone else. Either that, or that they want gluten free food because Gwyneth Paltrow said it’s the thing to do. I know a lot of this is just in my head, but it seems real none the less. Frustrating.
Currently, one of my (our) most important battles is with our society’s healthcare system, and the use of gluten in medications, or on the machinery that processes certain medications. Your pharmacist doesn’t have the answer. The company that makes the drug doesn’t have the answer, or they won’t give it. There are a few exceptions to this rule, but there are far too many pitfalls out there, and it is absolutely unacceptable.
I receive my medications through the Veteran’s Administration, but I know for a fact the problem is pharmaceutical industry wide, not just in the VA. My primary care physician understands. When he processes a prescription for me, he enters it into the system as “use gluten free formulation only.” I recently discovered that this request from my physician is completely ignored by the pharmacy technicians processing the orders. I have now received at least five different medications or vitamins/supplements from the VA health care system in a bottle that has “use gluten free formulation only” right on the label – only to find out that when the VA pharmacy processes the order, they simply pluck whatever one drug option their current contract calls for off the shelf and throw it in the mail to me – gluten or not. They don’t know and apparently they don’t care. I have spent countless hours on the phone with multiple departments of the VA to address this issue.
I have personally had a VA pharmacist tell me he can’t tell what contains gluten and what doesn’t, and that it doesn’t matter, because the VA can only carry whatever drugs it negotiated its most recent contract for. Not only have I personally spoken with all the manufacturers of the prescriptions I need, but the pharmacists have as well, and all they can get is the same blanket statements we’re all too familiar with: “while we attempt to provide our customers with blah blah blah, we can’t guarantee blah blah blah.” So basically what the drug companies are telling us is that they can’t really tell us what may or may not be in the products they are producing and feeding us. The CEO of a pharmaceutical company earns millions or tens of millions of dollars a year from the sale of his or her products, but he or she can’t (won’t) tell us exactly what is in them. Really? If I was to try and sell a product to a major pharmaceutical executive, and he or she asked me what was in it, and I replied that I am not really sure, or that I simply can’t say for legal reasons, would they purchase it from me or feed it to their family? A human being only has so many hours in the day to try and fight this battle without help from Washington. And it’s killing us.
The fact that celiac disease can slowly kill you by leading to all sorts of other problems is well documented. We need help. I am aware of the popular websites that list supposedly gluten free drug formulations, but I have become more and more skeptical due to my own lack of trust of the major drug manufacturers. Not to mention there is always the little bit of fine print that says that their suppliers can change ingredients without letting them know at any time, so ultimately they can’t be responsible. Go tell your employer that you “can’t be responsible” and see how that turns out.
The emotional ups and downs of a life with celiac disease can really take a toll on the body and the psyche. How you deal with the physical side of things is pretty straightforward (not to be confused with “easy”), but dealing with the emotional impact of such a difficult disease requires a lot of reaching out, and connecting with those who have lived the life.
I strongly encourage anyone who may find this Celiac Soldier’s story, to continue reaching out. Don’t give up and don’t give in.
Keep fighting the war on gluten. I know I will, and “I’ve got your six.”