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.
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GDude,
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.
Best wishes,
Celiac Soldier
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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.”
Celiac Soldier
I feel his pain! While I am a civilian, I am a military contractor stationed in Japan. I also got my diagnosis here. Unfortunately, though, my doctors haven’t been nearly as knowledgeable. It’s been a huge struggle, physically and emotionally, with the military not really having the motive and ability to help people like us!
Hi Kari,
I’m so glad you got your diagnosis after all. As you probably now know, we are basically on our own. We can go to all the doctors and nutritionists we want, but celiac disease is a challenge we can become more educated on than most any other health care professional seems to be, short of maybe some of the true celiac specialists around the country.
Either way, you’ve got us, the rest of the Dude Crew. There’s enough quality material here to help us stay away from gluten, and as I mentioned before and maybe even more importantly, stay laughing.
Stay dedicated. Don’t cheat, ever! It’s never ever ever ever ever worth it!
Celiac Soldier
It’s nice to know there are others out there! The new doc I was assigned to tried to reneg my diagnosis for celiac as well as my allergy to corn, and it took months of working with Patient Advocacy to get a new doctor assigned to me!
I’m three years into being gf now and it’s gotten more manageable, but it’s so hard being in a remote Japanese town with a disease nobody knows anything about! We are trying for a transfer so we will see how it goes! We will definitely miss Japan but it’ll be nice to be able to shop in a real market again and see specialists who know what they are doing!
Kari,
Boy, do I ever understand your struggle. Rice should be gluten free, meat should be gluten free, vegetables should be gluten free, etc., etc., etc…. That’s our life right? Lots of “shoulds.” But are they really?
Best of luck on the transfer. I am somewhat familiar with the transfer process based on family hardship as a uniformed Soldier, but I’m not sure what it’s like for you contractors. I did learn over the course of my military career, that I never had to accept the first answer. The printed regulations can be your best friend. All too often, it is possible to call your commander’s bluff, if you are familiar with the actual regulations.
I really hope it works out, but if it doesn’t, I am confident you will make it through!
Don’t give up and don’t give in!
Celiac Soldier
I’ve never gotten very emotional reading about celiac or other people’s experiences with it, but this seriously wrenched my heart! Thank you, Celiac Soldier, for serving and protecting our country, all while living in your own version of celiac hell. And thank you, Gluten Dude, for sharing this letter. I’m a stay at home mom and student, and I always feel like such a loser when I’m locked in the bathroom or struggling to stay awake after I’ve been glutened. Knowing a decorated soldier shares the same struggles makes me feel more normal and not so “less than.” Thank you both!
Good morning Tina,
I’m so happy this touched you. I did not expect this type of reaction. Writing that piece was extremely emotional for me. I felt like I had to live through the whole thing again.
I think we celiacs too often allow ourselves to feel lonely when we have each other just a few clicks away on forums like The Dude’s. There is something about this disease that shames us, and we can’t continue to allow that. We deserve better.
Don’t give up, and don’t give in!
Celiac Soldier
Celiac Soldier
Thank you for your professional dedicated service! Also thanks for sharing your celiac story in such detail because it’s vital for others to appreciate the insidious long term progressive nature of celiac disease. It also helps each of us tremendously to know we are not in this battle alone. Much thanks always to GDude for providing this forum.
Sorry for your suffering because it took so long for you to receive your Dx. I understand your plight with the military red tape. (I take my Dad to VA, which provides very caring & professional treatment for him but with plenty of red tape.)
One of our Celiac NP advocates tweeted an article this morning which concluded, “patients must become their own advocates to receive the level of care that is necessary for their health”. If I had not been a civilian 50+ yr old attorney w/ a NP who knew me & cared and who sent me to a young knowledgeable GI Dr who listened, I’d have died before receiving my CD Dx. I stopped eating gluten 31 days before my endoscopy & still had enough villi damage (and 3 types of cancer) to receive my Dx after being undiagnosed for 22 yrs. My prior doctors and NP cared and tried their best but simply did not know that gluten was progressively causing all of my ailments, which is why your CD advocacy is so very important.
Welcome back in the land of the free & home of the brave, much thanks to the men & women of our military like you, and especially welcome back into the land of the living & healthy thanks to caring physicians like Major Bahk!
Hap,
Thanks for the encouragement. Insidious is the perfect word. And “patients must become their own advocates to receive the level of care that is necessary for their health” is perfectly stated. I hope Kari read that, and that it sinks in. It’s the ultimate reality I have learned to accept. It is soooooooo easy to let yourself sink into a sort of hole, and be depressed and feel sorry for yourself, but I’m not giving in anymore.
I’m so sorry for your cancer diagnosis. I lost my mother to cancer a month ago. I now know first hand what it feels like to watch that disease swallow somebody’s whole existence. I do know that in my mother’s case, she was already fairly weak overall, and she just didn’t have much fight in her. I sense that you are strong and that you will not give up easily!
Keep fighting!
Celiac Soldier
Great Celiac story! Reading this story shows just how far-reaching the lack of knowledge and compassion is surrounding Celiac disease. I am not in the military, but as a Celiac who suffered severely for 20 years before getting a diagnosis, I can personally relate to this story. Years of doctors, years of misunderstanding, lack of compassion, frustration with not being taken seriously and just told to go suck it up, it’s all in your head, it’s enough to make anyone crazy and depressed. Everyday I am so thankful and feel so lucky to finally know what was making me sick for so many years. If I had not found out when I did I could have died. Celiac disease continues to be grossly misdiagnosed and misunderstood, but for those of us who finally know what is wrong, the gluten free diet is truly a life changing experience and for me personally, I finally know what it is to feel healthy for the first time.
Celiac Soldier, thank you for sharing your story. I’m so glad you finally got the answer you were seeking no matter how difficult that answer was. Wishing you health for the rest of your years.
CD,
Thanks for reading, and for supporting GDude’s site. It is quite an experience having a condition that is so tough to deal with physically and mentally, but one that just makes people roll their eyes or have a confused look. But that’s okay, we’ve got each other, and hopefully as the number of diagnoses grows, public education and understanding will grow, and make us feel more normal and accepted.
I was at a big name restaurant the other day, and when I asked the waiter about the gluten content in a particular salad, he literally said, “I know there’s no gluten in it, because I made it myself and I didn’t put any gluten in it.” I was unaware til that point that “gluten” was a single ingredient sitting in a bottle on the kitchen shelves that could just be sprinkled onto a salad. Sheesh!
Keep fighting!
Celiac Soldier
Celiac Soldier… I’m Canadian, but I still thank you for your service. I can’t even begin to understand how awful it must have been to have suffered that long in a system that just couldn’t care less. Though we’ve all had to fight in our own way, no story is without pain. I’m sure you didn’t feel it at the time, but it takes a very strong person to endure what you did.
All of these stories we read (thanks to people like Gluten Dude who are in a position to share with all of us) serves a reminder for me that we can never take our health for granted, nor can we take the opportunities and help that we have received at some point in our journeys for granted. I thank God every day that I received my diagnosis when I did. Oh I certainly suffered before the diagnosis, I struggled for almost ten years, but my new doctor at the time knew to send me over to a gastroenterologist because my ‘ulcer’ medication wasn’t even touching the pain I was in, constantly. Who has peptic ulcers when they are 15???
When I was finally sent to get a colonoscopy and endoscopy (yes, very scary for me as well!) it was only after I woke up from the tests that I was told they didn’t even have to do the colonoscopy, the endoscopy showed more than enough for the specialist to be convinced. My bowels and intestines were screaming celiac. Yeah, after all the ‘cleansing’ the day before, I was a little miffed. Heh.
It has been 13 years since my diagnosis and I’m still learning. Back then I was so lost, I had just gotten married and had to find my own way to figure out what the heck celiac disease was, I know I missed a few things along the way. I didn’t even have my own computer, let alone the resources we have today. It’s a life long struggle, that not many understand so this also serves as reminder for me that I need to continue to fight harder for my own health and stop feeling guilty at times for my disease.
I pray that your health will continue to flourish, and that complete healing comes soon. It’s a long road, but this community is a tight one, and we are here to support you!
And Gluten Dude, I’m not on FB any longer, I had no idea. Praying for your health as well, I’m glad to hear you are ok! I think your family has had enough trials for a while, yes?! Hope Dudette is doing well.
Christa,
You are sweet! And your disclaimer “I’m Canadian, but…” made me chuckle! I used to drive through Canada a few times a year and loved the people. Not to mention I’m a huge hockey fan, and you guys sort of own the world on that subject!
Luckily for me (?), I had bigger fish to fry than celiac disease during my service, so I sort of stayed distracted. It wasn’t til the very end when I had an easier job assignment that I started to suffer, and by then I was able to receive more attentive health care.
Ulcers at 15. What in the world were your doctors thinking? It’s amazing. You can go to college for 50 years studying high level science and medicine, but it sure doesn’t improve a doctor’s level of common sense does it?
You said it perfectly. “It’s a life long struggle, that not many understand so this also serves as reminder for me that I need to continue to fight harder for my own health and stop feeling guilty at times for my disease.” It just makes me want to cry when I hear another celiac talk about feeling guilty. Not wanting to go to dinner with our family, because we don’t want to make a fuss. Not wanting to go to a Thanksgiving dinner, because we don’t want special accommodations. We don’t want to be someone else’s problems. Sad.
Complete healing is something I honestly still fear may never come. I hate to say that, and I don’t really sit around feeling sorry for myself much anymore, but i’m still struggling. I am actually on day seven of an elimination diet. Yeah, the one I should have been on over a year ago. The first few days were tough, but I’m hanging in there, because I have to. In Afghanistan, we patrolled the mountains on the border of Pakistan. And there were many times I swear I prayed for death because I was so cold and so hungry. Little did I know I’d look back and think that was actually easier than dealing with the early stages of celiac disease after diagnosis. Amazing.
Best wishes, Christa. I’m so glad you are well on your way to being healthy!
Celiac Soldier
What a story! Thank you for your service. I am surprised you didn’t get a medical discharge! If Celiac is known before entering the military or one of the academies, there is no admission! Dr Fasano, MD, author of “Gluten Freedom”, mentions a patient wanting admission to the Naval Academy. Met all the requirements but was denied because of Celiac!
I have traveled with Celiac Disease, but I am not sure I would attempt a trip to Asia unless it was on a cruise ship. The cruise ships can handle the diet!
It takes awhle to heal and replenish all the nutrients your body could not absorb. Stick with it. It does get better. Sad, but the best tasting, safest food comes from your own kitchen.
Claire,
Serving was an honor. About the medical discharge, it is sort of surprising. I was actually working on my clearance papers to transition out at the time, but either way and like I mentioned, Major Bahk was amazing, but the Army simply had no protocol. You would think that when I was diagnosed, it would have automatically triggered a series of events to help me deal with the disease, and also provide my chain of command some heads up on what they needed to be aware of. But none of that happened. Looking back it was the strangest thing. I got my diagnosis, I walked out of Major Bahk’s office, and went on my merry way. I literally went back to my little Army barracks room and sat on the bed staring at the wall, no idea what to do. Going through that experience made me wonder, what if I had been diagnosed with cancer. Part of me thinks the exact same thing would have happened. I have some aspirations of advocating for some change with the military health care system – we’ll see…
Thanks for the encouragement! And you are darn right about the best food coming from your kitchen. It took awhile to learn, but I changed my whole way of thinking: it’s not “what CAN’T I eat?” it’s what CAN I eat?”
Strength and honor!
Celiac Soldier
My son is in the Army. He refuses to acknowledge he needs to get diagnosed because he feels he would be forced to resign if it was found that he did have Celiac. He has migraines a lot, gains weight easily (that is what happened to me, too), lost most of his hair by the time he was 28, has had high blood pressure since about age 34, and of course suffers from the wonderful emergency trips to the bathroom most all of us experience. He was diagnosed with melanoma last year. Stage 1. They said they got it all. He has 6 years until retirement. I hope he can get diagnosed then. Hang in there, soldier. It gets easier. Not easy. Just easier. You made it through the Army, bless you. Now you can begin to get your life together. We have a lot more fighting to do for Celiac Disease patients. Glad to have a person like you in the ranks. I mean …not glad you got the disease!! Just glad we have another fighter who realizes while we have won many battles for Celiacs in the past 10 years, we still haven’t won the war.
Hi Deb,
That darn bull-headed Soldier of yours! I feel his pain. He’s given so many years of his life to the Army, and just wants to finish it out on his own terms. I don’t blame him one bit, and I don’t blame you for wanting him to get the diagnosis. Here’s a little heads up: tell him the VA will rate him for it. If he has questions on that, have him email me directly at celiacsoldiers@gmail.com. If you mention the VA rating, I bet he will listen. I would understand if he didn’t want to expose it to the military doctors before he is ready for retirement, but tell him he has to plan on getting the diagnosis right before retirement so the D.O.D. has it on record.
Thanks for the encouragement, and best wishes to you and your little Soldier.
Celiac Soldier
Hey CS. Thanks for the addy. I will pass it on to my “little Soldier” lol I have to laugh because he’s a grown man with a wife and 3 kids, and not a very “little” soldier at all. But because I am still Mom, I can’t help wanting to do anything I can for his health. I understand his reasons, totally, for wanting to hang on until retirement. Thank you for the info, and thank you for your service.
Celiac Soldier,
Thank you for your service, and I hope things get better soon. My daughter has struggled with regular medications that may or may not have had gluten in them, and I understand that frustration.
One thing I’d tell you, and any other member of the Armed Services in your situation, if you’re having a problem with the military medical process, the VA or with any kind of benefit process, you should put together as many details as you can, and contact your Representative or Senator’s local office. They have people who deal with constituent work who might be able to help you before you have to spend more hours with the VA. You may not have any luck with them, or they might not be able to help in a particular situation, but it’s another avenue to go to try to get help. And often they do have good people who understand what it takes to make the wheels move in the right direction. Just something to try. Good luck.
Chris,
Serving was my pleasure. Well, most of the time! Maybe “honor” is a better word – it was truly that!
I’m sorry about your daughter. “May or may not have” – that’s our life, huh? What a royal pain.
I am growing more and more discontent with this whole medicine thing. It’s so completely unacceptable. I feel a fire burning inside me to take our fight to the next level, and I bet the Dude Crew would be willing to help. In my case, I believe it is especially frustrating because I don’t have a civilian doctor to work with that has access to different brands of the same medicines. Sure, I could go try to pay out of pocket for whatever I want, but is that fair? Is it fair that your daughter’s medications “may or may not” have gluten in them? Me thinks not.
Well, thanks for the encouragement, and best wishes to you and your family. I can testify that a family’s support is so important in a celiac’s battle. I don’t know your daughter’s age or overall level of education with celiac disease in general, or finding the right medications, but if she needs help, you know she can find it here. I’m rapidly building a solid education on the subject myself, so I’d be happy to help her too.
Keep fighting for your daughter!
Celiac Soldier
p.s. Michael Weber has a lawsuit against the FDA regarding gluten in medicines right now. Most probably know that, but for those that don’t, google it. I’m not sure if The Dude has covered that lawsuit yet or not. I don’t want to hijack The Dude’s website with spam so I’m not including any links here, but you can find it on your own.
Wow, thank you for sharing your story!
Camille,
You’re more than welcome Ma’am. I’m so happy you read it. When I sat down to write it, I never imagined The Dude would publish it, or that anyone would care.
Keep fighting!
Celiac Soldier
Thank you for sending in your story! My 12 year old son was just diagnosed. He’s passionate about military history and someday hopes to be a civilian engineer working for the military. I’ll be sharing your story with him.
Good morning Jenn,
You’re more than welcome. I’m so glad GDude keeps up this platform for us to connect. It was only a few days after my diagnosis in Korea, when one of my family members asked me if I had heard of the GlutenDude. I was still in my super angry reaction stage, so I said no and that I couldn’t care less – (sorry Dude, yeah I didn’t care about you). I was buried in my own misery. So my family kept sending me links to this blog, and articles from it, and I never read them. I don’t recall what it was that finally caught my attention, and it was probably mostly a product of accepting my fate, and not hiding from it anymore, but I finally realized I had no choice but to reach out and become part of the larger cause.
But I digress…
It’s strange having lived the Army life, and the front line combat side of it. I tell anyone I love to stay away from it, and that it’s not for them. But I am proud of your boy and I’m sure you are too. I just hate the thought of any other young man or woman facing the things we faced overseas. It’s a hard life, and it’s hard on the family. But it’s an American tradition, and one that I know we need the next generation to take on.
If you’re reading this website at all, that means you’re a fighter, and that means your son is probably a fighter too. It’s reassuring that wonderful folks like you are raising little fighters like your son.
I worked with combat engineers and also other types of engineers overseas, and my “little” brother is an engineer for a major defense contractor, so if your son has any questions or needs a little encouragement, let me know!
Have a wonderful day!
Celiac Soldier
Thanks so much for posting this letter gluten dude! And thank you celiac soldier for writing it!
I’m not sure why it’s so empowering but it really meant more to me than either of you might expect to read this story.
The incredible accomplishments you managed in such tough circumstances are truly inspiring. I’m currently struggling to have confidence in myself as a person, friend, wife, and employee. I’ve dealt with a lot of cognitive impairment, the last few years especially, possibly from a mix of celiac, thyroid, and hypoglycemia. I find it hard to trust myself while brain chooses to act as my enemy. I know i got through most of my life as a sick person by staying distracted and just having a mind over matter mentality, but it seems more difficult since I realized how far I could fall if I’m not careful. I really need to take a page out of your book and learn to soldier on.
Regarding the low blood sugar, you didn’t mention whether or not that had resolved, and I had a similar experience, so I thought I’d share. I was misdiagnosed with reactive hypoglycemia nearly 2 years before my celiac diagnosis and told to eat only complex carbs, which kinda helped for a minute, then made things much worse (maybe because I wasn’t absorbing complex carbs due to celiac). I did improve significantly after cutting gluten, but was still having a lot of trouble until recently starting a whole food plant based diet (forks over knives) recommended by my doctor. I can practically feel myself healing.
Also, 0 blood sugar episodes for the last month, even if I go without eating. That’s pretty significant for me! I tried many different things the last year since my diagnosis, nothing worked like this has. If it’s still a struggle for you, it may be something to consider for a while.
I hope not to stay off meat forever, because it’s delicious, but can’t ignore the incredible changes it’s made for my health. I promised 3 months to heal which are now up but I think my body still needs some more time. I’m going for 3 more, and may never be more than an occasional carnivore again(we’ll see).
Thanks do much again for your letter and of course your service!
Hi Gen,
“celiac, thyroid, and hypoglycemia” – you nailed it… I have been hypoglycemic and hypothyroid since childhood – maybe celiac was there all along. Thanks so much for commenting. I’ve just recently dug back into this article and realized I should’ve followed the comments and replied. I wrote the article to get things off my chest, and never considered that someone might comment. I apologize for not responding years ago. I had a friend ask about gluten issues, and remembered I wrote this.
I wish you and sonny boy the best. And as far as my service goes, I tell people, you’re welcome, and most if it was my pleasure, and some of it wasn’t :).
Celiac Soldier
Chad
Thanks for all of your thoughtful responses today Chad.
You are very welcome good sir I would like to reconnect to your website and write some more.
Deb,
I’m a celiac living on post here at West Point- was diagnosed by an army doc two years ago, our new active duty radiologist is also a celiac and is still on active duty. I believe one can get a waiver to stay on active duty as long as one can perform his duty. Celiac will prevent entry into military however.
Thank you, Jane, for your insight. My son mentioned that it has to do with his job. He is a Chinook pilot, has been for 9 years, and so his job would not allow for him to be totally GF. That is why he does not want a diagnosis at this time. He also just got to CW3 5 months ago, and he wants no reasons for them to let him loose with only 6 years left to retire. I suppose he just doesn’t wish for anything to ruin his retirement plans, understandably so. He sees me still alive, so probably figures he can hang tough for a little longer lol
Hi Deb,
Tell your son I am very thankful for his service as a rotary wing pilot – I have spent a lot of time on Chinooks, and that is not an easy aircraft to pilot, so he is very gifted.
I’m not totally up to speed on current Army regs, but I thought I read you could get booted for having celiac disease.
Anywho, send your son my best, and I am happy to help if I can in any way with the learning experience.
Celiac Soldier
Chad
First, thank you for your service to our country.
Next, I think I must be a little extra emotional lately, or maybe it’s lack of sleep with a new puppy, but your post had me in tears. It could also be the frustration I have over the disregard for my well-being I feel that I am getting from my GI doctor over this past year. He took over for my doctor, who left, and scheduled my diagnosive endoscopy after I had been back on gluten for only 9 days (was g.f. for 3 years.. both myself and my previous GI doc suspected Celiac). So he has dismissed it, due to a not surprising negative result, and won’t consider the symptoms, and the health history.. as the diagnosis is the “golden standard”. Forget that I am still having health concerns, that could be related. Forget that I have pain and symptoms of pancreas issues.. I’m too young, a woman, and I don’t drink heavily, so we aren’t even going to consider that as an option. In the meantime we “could” do a stool sample, but why don’t we just wait and see. Well.. for what? It’s been a year now.. what are we waiting for? I still can’t absorb fat, my stomach still hurts, I still get pain in my shoulder blades.. back.. (my gall bladder was tested.. it’s functioning at the low end of normal, no stones, no sludge), and most days I just want to quit on food, because I am tired of feeling like garbage.
But he’s the “best GI doctor” we have, and who else would I possibly want to go see? (sigh)
Anyways… I loved your Dude Crew comment. Like, majorly loved it. I’m going to think of us as The Dude Crew from now on. I love that.
Keep on keeping on. B
Hi Beth,
It’s been years since I revisited this site. I stayed away too long. Thank you for reading my story. I wish you the best. Let me know if I can provide any support or help in any way, been learning about this disease for a long time now.
Celiac Soldier
Chad
Celiac Soldier,
Welcome to The Dude Crew where everyone searching for answers to pain & humiliation with diagnosis and peaceful healthy food, is family. There is no discrimination or borders with CD, but full disclosure: I am Canadian, eh? Although I am a civilian with universal healthcare, it was 16 years for my diagnosis, from my pack of specialists so I also have a personal relationship with a few friends of CD.
My blue chip fortune 500 employer was also unaccommodating & unforgiving of my sudden doctor appointments & tests (ultrasound, MRI, endoscopy & colonoscopy) during working hours on short notice in prime vacation season at month end. And no they absolutely do not want you at work sick, but they do not expect you to ever call in sick either. I was cross-examined (ironically by a diagnosed Celiac) who told me to take vacation time for my medical tests after being made to feel like a hypochondriac by explaining in detail all the tests and exactly why I would not reschedule due to my symptoms as I needed a diagnosis….It was frowned on when I called in sick the day after the colonoscopy….some vacation! The point being military or private sector, employers do not get it!
Having reservist family who have completed 3 tours in the Middle East, I had to share with you, his strategy regarding food as a vegetarian who turned carnivore for the tours to survive…….He would take the bus and tour the camp by “country” and trade rations till he found the ones with that suited him best! (I think he mentioned the Brits having some of the best.) I thought this was odd but genius when I found out his civilian wife did the elimination diet for 2 years to heal her body and identify her major environmental allergies and the one to food—ALL MEATS. Little did I know 10 years later I too would be doing the elimination diet to heal and identify safe foods, and yes I come back to basic bone broth after a glutening so I can heal and be nourished.
Now, I am not sure what it would take or if it is possible but…..I thought I would share given your mention of meds, a pharmaceutical manufacturer who was the first to certify GF with the Canadian GFCP as pharmaceutical manufacturer in Canada, Mint Pharmaceuticals Inc.
So, Celiac Soldier, I hear you and feel your pain in a very personal way. Do not give up; get healthy & go kick celiac ass! You will do it just like surviving Iraq, one step, one hour, one day at a time. Oh, and I got your six in the Great White North!
Thank you soldier your service. You are important…..and not forgotten.
Need helps support or just want to talk…..the Gluten Crew is on duty.
Till next time,
Donna
Just dug back into this article, as a friend had expressed some concerns. Thanks so much for the detailed response. I poured my heart and soul into this writing. Hope all is well..
Celiac Soldier
Chad
Thank you for writing this. I am a former Marine and I went through hell and humiliation. I wasnt diagnosed until after I got out. There are still so many days I have a hard time not beating myself down for “being weak” lately it’s been really hard and I just want to give up but then I realize I need to know how to combat this to be an example for my baby boy in case that he has it too. I just appreciate hearing that I’m not alone and to keep fighting. Although I’m young this Devil Dog is worn out.
Hang tough Ames. You’re anything but weak.
I search high and low for encouragement when I’ve been “glutenend” my search always brings me back to this website. There’s not another community like it.
Thanks to Celiac Soldier for writing his initial letter and then replying to so many comments. He (I believe he’s a he,lol) articulated well and incited many emotions and struggles: “shame”, ‘self advocate’, and now you Ames saying “being weak”. A good friend told me “It’s okay, to not be okay.” I still lie about being sick sometimes, but that truth is mentally liberating when I choose to accept it.
What also resonates with me is that Superman has kryptonite and I have gluten. Neither has the ability to make him or me inherently weak.
Hi Shawn,
I want to offer my sincerest apologies for not replying to this years ago. As I have mentioned in other replies, I just never expected anyone to care or respond, and I mostly did it to get a lot of these things off my chest.
Your comment: A good friend told me “It’s okay, to not be okay.” I still lie about being sick sometimes, but that truth is mentally liberating when I choose to accept it.
That couldn’t be more true. It’s taken me years to accept that philosophy. Your comments are deep, and intelligent… thank you.
Best wishes,
Chad
You’re a good man Chad.
Thanks that honestly means a lot to me.
Ames,
My sincerest apologies for not replying previously. As I had mentioned in previous comments, I just didn’t expect anyone to read it or care what I wrote. As an Army Soldier I would normally say Hooah, but I will show you the honor of telling you Semper Fi. I served side-by-side in close combat with some amazing Marines. Unfortunately during our time the military taught us that we weren’t allowed to show any weakness although that is a wormhole in itself. You definitely need to show your baby boy your strength through this affliction but obviously through all of life‘s other afflictions, many of which as you well know could be much more complicated. Don’t give up Devil dog, and don’t give in. I pray you see this message at some point and stay connected to the crew. We got your six.
Celiac Soldier
I’m surprised he was allowed to stay after the diagnosis, because I can’t join, or even get drafted.
Hi Joseph,
I had read similar regarding celiac disease preventing a person to remain on duty or join. Having served in the capacities I did, I would have to agree this policy is not only sensible, but mandatory. It’s a hard truth about war – no guarantees if and when, or what you may ever have to eat in the most extreme circumstances around the globe. I could go into very detailed stories, but the point is that any person who requires any type of special assistance or provisions is likely to get him or herself or others killed. I can say that, because I lived it.
Best wishes
PS – without wars, the military was a very boring place for me, and it was the only reason I joined.