As I started to re-read it, I got goosebumps with the very first sentence. The beginning of his paper has a whole new meaning now. Nothing to do with celiac. Those who have been following my blog know that we almost lost him to a car accident six months ago. Gluten???- after what he went through - What we all went through - The challenge that goes with a gluten free diet pales in comparison. *By the way - We moved him back to college a couple weeks ago for his final senior year. He not only healed completely - (minus the teeth implants still in progress :) - but took up running - and working out. Sometimes its the fight we are forced to face that brings out a strength in ourselves that we didn't know we had. The beauty of it is overpowering sometimes.
Hug those you love - E-v-e-r-y day you can.
Back to his high school paper - Copied Below:
(please keep in mind that this was his perspective - not completely factual:
He included oats as a gluten grain (which is due to contamination. GF oats are available)
He stated that it took weeks for test results (it was several days)
He stated his sister and he tested positive (actually - K's was negative and his was
inconclusive. Both agreed to try the diet. He remained gluten free as positive
results made it obvious that he needed to be gf.)
His statement about his last sandwich - of course it wasn't. All the homemade and store bought bread available now means sandwiches are still a part of his life.
Referring to the endoscopy - Of course we know its not painful :)
Stomach VS Self
Almost no one realizes it, but virtually any aspect of life can be snatched away at any given moment. It is especially difficult for children to consider such a dismal truth, with their blissfully naïve lifestyles. Whenever someone mentioned how astonishing it is that people take life for granted, I used to underestimate the profound truth of that statement. I would consider the
fact that many people are starving in the world, that homelessness is an issue, and other predicaments on such a larger scale, but I did not think about how that statement could possibly apply to me; I appreciate my home, family and available food. But taking life for granted does not only concern worldwide issues; it can also mean not fully appreciating things that you do not even realize can be taken away. Due to a fairly common, yet particularly unheard of disease called Celiac Sprue, I learned this lesson quicker than I would have liked.
I am not sure when this all began, exactly. That is, I do not know when I developed the disease. I do, however, remember when I discovered that I had Celiac; it was towards the end of the summer before the seventh grade, a time during which children are meant to frolic through life without a care in the world. The frolicking and joy would continue, but the carefree lifestyle, especially concerning food, would not. For the past several years my mom was dealing with various health problems, and after numerous tests, she was diagnosed with Celiac Disease. While we were glad to find a reason for her problems and a way to maybe make them go away, the diagnosis of an unfamiliar disease was not good news. Most doctors are fairly uninformed of Celiac, but the main idea is this: anyone with Celiac cannot and should not eat anything with gluten, a protein found in wheat, oat, rye and barley. As awful as this restriction on her life sounded, my mom knew that going on a gluten-free diet would improve her life, and my family and I supported her throughout this pivotal time in her life. If a person with Celiac eats any such food, long term medical problems may occur, such as osteoporosis and/or various forms of cancer. Some immediate effects of this disease are as minor as irritability and stomach aches. Once my mom realized that Celiac was a genetic disease, she informed her relatives, and most importantly, her children. My sisters, K.... and T........, and I were given blood tests during mid-summer of 2002. The results came in several weeks later.
My mom selected an ironic and somewhat cruel location to break the news to my sisters and I; we all went to get lunch at the St. Louis Bread Co. Since a place such as The Bread Company would obviously not have many wheat-free products my mom ordered a soda while I ate some of the last glutinous food in my life, oblivious to the life-changing blow that the upcoming report would deliver to my gut. As it turned out, the blood tests for my sister K..... and I came back positive, while T...... was negative.
I did not pick up on the full impact of the news at first, but I did know enough to feel a great disappointment swell up inside me; life without wheat seemed impossible at the time. I looked down at the sandwich I was currently eating, then looked up at my mom and asked, “So this means no more sandwiches, huh?” The first several weeks were difficult, since it seemed as if every time I looked at an ingredient list, the words “wheat flour” or “wheat gluten” were staring back at me with malevolent self-contempt. But after some research and appeals for help, a beacon of hope shined down upon the A....s household. Around the same time my mom was diagnosed, the Bi-State Celiac Support Group formed, (because I was one of the co-founders, hee hee) and a website titled St. Louis Alerts was created to share information concerning gluten-free food. As time passed, awareness grew, and gluten-free food became easier to come by.
Despite the new found plethora of edible food, I still missed gluten dearly. Even to this day, I have to fight the urge to pull into the parking lot of Krispy Kreme whenever I drive by and the “Hot Doughnuts Now” sign is lit up. The craving for glutinous food was worse, however, before I decided to volunteer for a biopsy; I was strong-willed enough to stay away from glutinous food, but none of the wheat-free replacement foods seemed to satisfy my taste buds. My mom explained that the blood test was not one hundred percent positive, and that the only way to be completely sure was if I had a biopsy. A biopsy consists of doctors sliding a tube down my throat, weaving it through my insides, and scraping off a tissue sample from my small intestine to test it for gluten-related damage. Although I would be asleep during the test, it sounded
like a painful procedure. But I wanted to be sure that I had the disease; I knew I would not be content with living a life of uncertainty. For accurate results, doctors recommend that the patient eats gluten for two weeks prior to the test. This was some of the best news I had heard in a while, and I soon put into action my plans for “Gluten Tour ’03.” My plan was to eat all the glutinous foods I missed the most while I had the chance. This included Quizno’s sub sandwiches, Taco Bell, snack cakes, and of course, Krispy Kreme doughnuts, fresh off their magnificent conveyer belt. After about two days of pure wheat-enhanced bliss, I felt absolutely terrible. My stomach and head exacted their revenge upon their master, for I had betrayed them. Since I could not remember the last time I was so extraordinarily ill, I concluded that it was a result of my ravenous gluten intake, and I decided that the biopsy would not be necessary. Besides, I did not think that I could survive twelve more days of such torture.
It has been over four years since I have eaten any wheat, oat, rye, or barley, and at this point life without gluten is a lot easier than I ever thought possible. But if you asked me six years ago how I would survive without eating wheat, I would probably have responded with something along the lines of “That’s a dumb question, why would I not be able to eat wheat?” It really does take the absence of something as common as wheat to realize how much it can be missed. But once that initial sorrow is overcome, all of the wonderful aspects of life can be appreciated once again, and a new sense of fulfillment and contentment can be achieved.
My son quesioned his need to be gluten free once again once he started college and found the temptation to indulge in regular pizza, subs, etc too strong. His occassional cheating appeared to cause no 'issues' (according to him). He chose last summer to complete a gluten challenge (although I now question if it was long enough)? A month long gluten challenge still resulted in negative blood tests and biopsy. His G.I. took twelve samples - yet - nothing! The fatigue, mood change, bloated belly - and MORE overpowering fatigue is what gave him reason to remain gluten free even though he was still in college - and even though the tests were negative. After a few weeks on the challenge he said he was looking forward to being gluten free again.
Coming Soon - "