I was visiting a friend a earlier today, and her parents happened to stop by while I was visiting. The mom asked how I was doing with my whole Celiac thing, and I told her I was doing well. It's weird because I rarely ever actively think about it, anymore. It doesn't occupy my waking thoughts, and I haven't dreamed about accidentally eating gluten, or Celiac Disease in any way, in years.
Why is this significant? Well... because after she asked how I was doing, I remembered that today is the seven year anniversary of my diagnosis. I was admitted to the hospital on Friday, July 12th 2002, I was (apparently) diagnosed on the 13th, and released on Sunday the 14th.
For several years after the diagnosis, I had wanted to write down the story of what led to being admitted to the hospital, and my experience in the hospital. One particularly crappy winter day I made the mistake of going shopping at a grocery store that was very near to a local business district where a lot of people do their Xmas shopping, and I ended up getting stuck in a parking lot for an hour, and I almost ran out of gas in the process. All this to pick up a few odds-and-ends groceries. For those who don't know, I
hate getting stuck in traffic of any kind. Thankfully I don't live in L.A. This ended up being a particularly stressful event for me, and by the time I made it home, I needed to do something to decompress, so I sat down at my computer for three or four hours, and hammered out a rough first draft of my Celiac Story. I had always intended to do a massive edit, and rewrite, and submit it to some publication (although I don't know which ones) for publishing.
I think I can literally count on one hand the number of people who have read this story. But because today was the anniversary, I decided to find the piece that I had written, and make it a blog post. I am doing so with a
huge caveat. As I said above, this is a very rough first draft, and I literally haven't touched it since I wrote it. One day in the future I intend to do some editing, and rewrite it from the perspective of
saying it, instead of
telling it, but that will have to wait. But for now, I give you the story:
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My Unusual IntoleranceBy Richard V. Wielgosz
Back in July of 2002 I had been feeling pretty poorly. For some time I had been very weak and always out of breath. If I told you how long I had ignored the symptoms in the hopes that they'd go away, you'd slap me, so I won't tell. Most people have a small amount of anxiety about going to the doctor; I guess my allotted amount was (is) more than small.
I'll begin by giving you some history. Many years ago in response to several great-aunts and uncles passing from colon cancer, I had altered my diet quite a bit. I never digested red meats very well so I removed those immediately. I started eating more green leafy vegetables and fewer white meats as well. In time I became a sort-of ovo-lacto-vegetarian, completely removing meats from my diet, and subsisting on grains, vegetables, and dairy products. I would use whey and soy supplements to get the proper amount of protein. It seemed like I had a great diet, so why did I feel awful?
When I awoke in the morning I could feel my heart thumping away at what seemed like an unusually high rate. After getting past my denial that this was going to go away on its own, I gathered the courage to put my index finger on my throat while looking at my watch and came up with an alarmingly high heart rate for first thing in the morning. Could it really be 105 beats per minute? I take cycling pretty seriously, and when I was riding regularly and was at my fittest I would awaken and have a heart rate in the high forties or low fifties. Something was
very wrong.
The doctor to whom I used to go had since retired, and I needed to find a physician who would take me as a new patient. My friend Sue is a health care professional and recommended a particular physician whom she knew was taking new patients. The next day I called his office and scheduled my first physical in about a decade. The appointment was on Thursday, July 11th, 2002. We talked about my family history for a while, he took the usual in office tests including an EKG, and scheduled me for some more cardiac tests. My cardiac rhythm look fine, just elevated. He was thinking that I might have some thyroid problems since other family members had been diagnosed with them. I left his office with some paperwork to bring when I went for the additional cardiac tests, and some directives for blood work.
I went for the blood work the following day on the way to work, which went normally until about noon when my phone rang and it was our receptionist telling me that my doctor was on the phone. My first thought was, "Uh oh, this can't be good." I took the call and was told that my blood count was dangerously low, that I was probably bleeding internally, and that I needed to be admitted to the hospital immediately. This is pretty scary stuff for a guy who has never been to the hospital for anything other than to visit sick family members and friends. Co-workers later told me that I turned a terrified and sickly shade of white. This is quite a feat since my skin color was already quite pale from being so anemic (which up until that phone call I didn't know), compounded with the fact that I'm Polish and British in heritage.
He told me to meet him at his office, and he'd call for an ambulance to bring me to the hospital. Ambulance? Was I really that sick? Come on, I knew I felt a little tired, but I was still working eight hours a day and was struggling through this problem.
I drove to his office and the receptionist (quite unusually) let me see the doctor immediately. Again, a sign that things weren't good since normally the wait can be measured in fortnights. The doctor showed me some alarming things. The Common Blood Count (CBC blood test) showed that all of my levels were askew, the most notable being my red blood cell count which the test showed to be around seven. I later found out that a good red blood cell count should be between fourteen and eighteen. Holy dive-bomb Batman, what's going on here?
He was about to ambulance me off to the hospital to be admitted when I insisted that I would drive. I suppose it was silly, but something in me wouldn't let that happen. I would
drive to the hospital in my own car. I had been living with whatever this was for some time, and I was quite certain I could muster a fifteen minute drive to the hospital. He cautioned against it but I wouldn't have it. I was driving dammit.
I arrived at the hospital and they were expecting me. It was about 2:30 pm and they did the necessary paperwork and sent me to the ER for a blood transfusion.
A WHAT?! They're going to put someone else's blood in me? Don't people sometimes acquire deadly diseases from transfusions? The list of things that scare me seems to be growing. Despite that, I reasoned that this would be relatively safe. The likelihood of actually getting sick from a transfusion is pretty small. The fantastic nurses hooked me up to an IV and told me I wouldn't have my own room until they could find me one. Great.
To kill time I talked to the nurses and various other examples of humanity that walked around the ER. It was actually quite interesting and at one point one of the nurses came in to check my blood pressure and temperature and I asked her something I had always wanted to know. What happens if they infuse you with the wrong blood type? I asked and I don't remember all of the things that she said, but one of the things she did say was that I could die.
DIE?!?!?!?!St. Elsewhere did not prepare me for this.
Suffice it to say, I took a great interest in their cross check procedure before each following unit of blood was hooked up to my IV tube.
The wait for a room ended up being about twelve hours. They finally wheeled me up to the room as the SECOND unit of whole blood was dripping into my veins at about 2:30 am.
My first night in a hospital was very memorable. Memorable because I was awake for almost every moment of it. Between the nurses checking my blood pressure and temperature every hour, (standard practice I was told during a transfusion) and the incoherent man in the bed next to me crying and shouting out gibberish every twenty or thirty minutes, I got no sleep. By morning I was quite sleep deprived and was fed a breakfast of pancakes and some sort of sticky sweet stuff which was labeled "pancake syrup." It would later turn out that this was a terrible choice given my condition.
Shortly thereafter I was visited by a Gastro-Intestinal specialist for a consult. We talked for fifteen to twenty minutes and he told me he had me scheduled later in the day for an Endoscopy to check for the bleeding ulcer they thought that I had. Oh great, I thought. Now I get to have a camera rammed down my throat.
Throughout that Saturday various friends (thank you Lesa) and family visited me between cat naps, and finally a gurney was wheeled to my door with a sign on the pillow labeled "ENDO" in black marker. This procedure scared me a little. It's invasive and I had never undergone anything like it before.
They wheeled me down to a room where I was hooked up to various pieces of monitoring equipment and the procedure was explained to me by the doctor's assistant. They knocked me out and the next thing that I remember is waking up in my room and seeing my friend Mike. I have no memory of the procedure and can not even guarantee to you that it actually happened. All I had was some missing time. I could have been abducted by aliens for all I know. Before going under I asked the doctor to make a video of the procedure, but was told they didn't have the right equipment to do that. Pity, at least I'd have some proof.
The anesthetic they gave me for that procedure must have been pretty powerful. My memory of the first hour talking to my friend Mike is vague at best. I'm told I flirted with the candy striper, and introduced Mike to another friend three times. Wow!
I was later told that by this time the correct diagnosis about my condition had been made. The doctors however chose not to include me in this epiphany that day. One of my fantastic nurses asked me what I thought of my diagnosis and I told her that I was not aware that they had made one. She said they had, and that it wasn't a bleeding ulcer, and that they would tell me the next day. She would have liked to have ended my suspense and told me the diagnosis but the chain of command required that she leave that to the doctor.
The next day was Sunday the 14th. My GI doctor stopped in to see me while I had a visitor and told me that I had Celiac Disease, which is sometimes called Sprue. Celiac Disease is an intolerance to gluten, a protein found in many popular grains like wheat, barley, and rye. When ingested this triggers an autoimmune response in the body causing the immune system to attack and damage the small intestine. Continued ingestion of gluten over prolonged periods of time leads to severe GI damage resulting in many things, one of which is essentially malnutrition. I was not absorbing nutrition properly. Nutrients like iron to help build blood components (remember I had Anemia) and other unimportant things like protein and calcium (he says with dripping sarcasm). At this point it all started to make sense. With my friend Lesa I had gone over my diet counting things like iron intake, and based on our calculations, I should have been fine. This diagnosis made all the sense in the world. I was
eating enough good stuff, just not absorbing it properly.
I was released from the hospital on Sunday as well. I was thrilled to be out of there. I found the experience to be very stressful. Thanks to the four units of whole blood I was given, my blood count was now at a respectable level, and I was released with a prescription for time-release iron tablets (two or three hundred Mg's per day for a month), and a follow up appointment one month later.
I was somewhat familiar with gluten intolerance because I had seen the products labeled "gluten free" at my whole foods store, but never in my life did I think I would ever have to eat in that way. However, considering that I was terrified that I had something like colon cancer that was going to kill me, I was thrilled to have Celiac disease. All I had to do was avoid gluten. Easy, right??
Anything that can be made out of normal flours can be made out of various gluten free flour combinations. So now when I go shopping I reach for the rice pasta instead of the whole wheat pasta. I have found that food I eat now is every bit as flavorful as "normal" food, but texture has changed. Gluten gives flour the ability to be stretchy and gives it the that wonderful flaky texture in pastries. I'm perfectly happy to trade those things to feel good.
OK, maybe it's not as easy to eat gluten free as I implied two paragraphs ago. In practice, for me it wasn't too difficult, but for people not as careful as I am, it can certainly be challenging. Gluten is often hidden in many store bought prepared foods, and in places you'd never imagine. It can often be found in those mystery ingredients on labels called "natural flavors." This requires people with Celiac Disease to be vigilant, lest they ingest gluten, that poison to their GI tract.
Has it changed my life at all? Absolutely. Going out to eat is sometimes difficult, so I don't do it as much as I used to. I cook more than ever, and if friends want to go out to a restaurant and I don't feel like playing "quiz the chef," I simply eat first and enjoy a drink with them over dinner. Fortunately the chefs in most restaurants are very accommodating and do their best to help you enjoy your meal. However, you do need to be your own advocate, and if the restaurant is not very accommodating, either go to another restaurant or wait to eat until later while your friends enjoy their meal. If you're unsure about the contents of the food it's always best to not eat. I simply do not, and will not take risks with my health. I don't ever want to feel like I did three years ago, again.
Looking back I find that my experience in the hospital was nothing but positive. Sure it was scary, but they correctly diagnosed me in two days. I'm very lucky. I have friends in the Celiac Support Group of the Mohawk Valley (CSGMV) who went misdiagnosed or undiagnosed for decades.
Another gift that I was given by being in the hospital was to be able to spend time with my great-aunt Bertha. She was admitted around the same time as I, and was in the room directly across the hall from me. Getting to spend time with her showed me how much of a remarkable woman she really was.
The hospital staff was amazing and I owe them my gratitude for their wonderful care. I know all of that stuff about nurses being like Florence Nightengale sounds like a cliche, but for me it's not. They were awesome.
Celiac Disease is one of the most misdiagnosed diseases in the world, and undiagnosed this can lead to many other serious complications including colon cancer. Remember those relatives of mine who died from colon cancer? I strongly believe they had Celiac disease and were completely unaware of it.
People with Celiac disease commonly exhibit weight loss, anemia, fatigue, skin rash, depression, and those ugly GI issues no one likes to talk about, but not always, and that is why this is such a difficult diagnosis to make accurately. Once suspected, a simple blood test is often enough, but combining that with a biopsy of the small intestine is the strongest diagnostic method.
As I said earlier, for me this kind of change wasn't a big problem. For many people however, it can seem overwhelming. Thankfully for those people there are resources like the local CSGMV and national resources like the Gluten Intolerance Group. These groups can help you manage the change to a gluten free lifestyle, but remember that you need to be your own advocate, and be vigilant. Phone or email companies if you want to be sure a product is gluten free. This is the best way to be sure. Recently, a food labeling bill passed congress and was signed into law that will make labeling on food more clear, and I believe it will be fully enacted by 2008.
If you are exhibiting any of those symptoms and don't feel well, ask your doctor to test you for Celiac Disease, it might change your life.
Find the Celiac Disease Group of the Mohawk Valley on the web at
www.csgmv.orgThe Gluten Intolerance Group can be found at
www.gluten.netCopyright Richard V. Wielgosz
