[If you have a weak stomach, this first post may not be for you, but feel free to read the rest. I'll get the bad stuff out of the way and then talk about more productive stuff going forward, I hope.]
My name is Mark, and on June 6th, 2011 I found out I had celiac disease. This is only 7 days later, so I still remember my reaction. My instantaneous reaction was, "That's good news, what a relief!" If I had to guess I would say that is not a typical reaction to someone finding out they have celiac.
To understand why I was in the vast minority here you must first understand something about my family. My mom has quite a few health problems. She has lupus, diabetes liver disease and colitis (which runs in our family). For most of my life I have had unusual BM's. It has basically just been that I've gone a bit more frequently that most other people, and gone in smaller amounts each time. However, probably since high school I would get diarrhea whenever I was under a high amount of stress. I had always thought this was simply just stress related and was nothing really to worry about.
Over the past few weeks I have been planning a pancake fundraiser which is something I've never done before. I was having a lot of stress about it and was also under some stress at work. This lead to me getting sick enough to actually have to stay home. I even lost around 10-15 lbs. After the 3rd or so time of having to call in sick I decided that I needed to go to the doctor. I went to the doctor and we talked about my family history and since my symptoms sounded a lot like colitis the doctor's best two guesses were either IBS (which is like saying "something's wrong with your gut, but we have no clue what it is") or colitis. However, they took some blood to test for a slew of things just to make sure it wasn't one of them.
I went into the doctors office that first day a bit bummed out cause I was fairly certain that it was colitis. For those who aren't aware, colitis is nasty stuff. If I had colitis it would mean that my diarrhea wasn't just a symptom - it was a foretaste of what the rest of my life would be like. It meant that diarrhea wasn't abnormal, but rather normal. It meant the pain I felt in my gut, the urgency to have to go to the bathroom, the pure liquid stools were no longer a rare occurrence but rather they are now what it means to be me. Since my mom had colitis pretty bad I could also see what the future held. That some day, around 10 or 20 years in the future, I would get cancer in my colon. I would then, most likely, have to get my entire colon removed and would have my small intestine empty directly into a bag that would attach to my side. This bag would leak frequently, it would limit my flexibility, it would be an issue when I carried things, it would be an issue when I slept, it would be an issue on trips, it would change my life in many complex ways. And that's all assuming that they had gotten all of the cancer.
So when I first started having symptoms, when I first went to the doctor, when she agreed with my suspicions, when she referred me on to a specialist - during all of this I had the terrible scenario above in my mind. It reminded me of an old saying from India:
If I have been brought into this world, then I must live.
If living is poisonous, then I must drink it.
In laymen's terms the above scenario is what it means to be me and I just have to deal with it. This is the hand that God had dealt to me, this is my fate, this is what living now means for me.
Now, given all of the above, one can easily see why celiac wold be, for me, a great relief. In fact, I was living on cloud 9 that whole first day. It meant that the pain I had, the symptoms I had, and even the resignation I felt towards it all did not have to be! This was no longer the 'norm' for me, it was no longer my fate, I was not doomed to this symptoms! I could take action to change them all! I am glad that I found out in the early morning cause it made my whole day fantastic. I felt as if I had been pardoned from a life sentence and instead given a simple fine and probation. A great load had been taken off my shoulders, and I felt free.
Day 2, however, was a bit of a mix of emotions. By day two the overwhelming relief had lost it's edge and I was able to give some thought to what celiac would mean for me. My realization was rather slow. I had learned, at that point, that I basically wouldn't be able to have foods that contain wheat, barely, or rye. Over the next few days it began to sink in exactly what foods that would be entailing. It started simply with me having a slice pizza and realizing I wont be able to eat it any more soon, or having a doughnut and wondering if it's my last, or smelling bread and understanding that smelling is all i'll be able to do. Surprisingly these weren't that shocking to me. I happen to know a lot about cooking and I felt semi confident that if I desired I could mimic a lot of these things.
The shocks more started when I began to put this in a social context and realized that when I go to someones birthday party I wouldn't be able to have birthday cake. If someone served cookies and milk I wouldn't be able to have one or possibly both of them. Most types of breading have flour in them so basically everything deep fried - cheese curds, chicken, tenderloins, chicken nuggets, fish fillets, country fried steak - would all be off limits to me. If I got invited to olive garden, old chicago, applebees, mcdonald's, steak and shake, culvers, hamburg inn, or even a pancake breakfast I would be hard pressed to find anything I could eat. If I running late for work and don't have time to pack a lunch I can no longer just grab ramen. For crying out loud I cant even buy a can of tomato soup from a store (they have flour in them for some reason, it's weird) and even if I could I couldn't put any of the crackers that I so loved into it. Dorito chips themselves would be fine since they're made with corn, but the delicious powder that coats the chips (and your fingers if you eat them) contain wheat. So I cant even have those unless I wash every chip before hand which would just make them disgusting and soggy.
Of course, these realizations were all just part of me being a negative-nelly. When put in a larger context this disease may quite possibly end up giving me a longer life span. I currently weigh 350 (when i'm hydrated and not spending all day with my good friend, the john) and that is entirely too much. For a guy my height with my build I should probably actually weight about 150 to 200 lbs less than that. The types of foods that I can still eat are the various leafy greens, all the different vegetables, all the different fruits, the vast array of spices and seasonings (that don't have wheat, rye or barley), distilled spirits, and anything made using flours from rice, potatoes, or other similar starches. Basically it sounds like a pretty healthy diet. If I toss in some exercise (which living in iowa city there is a gym on every block), then I stand to lose a ton of weight over the next few years and to likely get in good shape. Since my bad eating habits have infected my wife, i'm sure my good eating habits will infect her, too, as well as our upcoming baby (december 24th due date, huzzah!).
At the end of this month I have an appointment with a gastroenterologist who will confirm the diagnosis, determine the extent to which i've damaged my small intestine, and probably check for cancer (if you don't treat celiac, thats what happens). After that I will likely see a dietitian to help with figuring out meal plans to adjusting to the celiac life style.
The point of this blog is to keep you guys up to date with how it's all going for me, and also to probably post some of the new recipes that I find that are celiac friendly.
Thanks for reading!
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