My Celiac Story
It’s been over two years since I finally found out what was destroying my body from the inside out. I had a history of stomach problems and when my symptoms became bad enough to feel justified going to the doctor, was told that I had gastritis, which is essentially an enflamed stomach lining. Antacid medications were prescribed and I was sent on my way. The medications seemed to work at first, but eventually my symptoms came back. Each time my “gastritis” came back, it was worse than the time before. I felt bloated, my head hurt, I was nauseous, and my insides felt like they were on fire. My skin also reacted by producing patches of red, itchy, flakiness. Around 2003, the symptoms began to include mindcrushing migraines. To combat the migraines, a neurologist put me on an antiseizure medication and told me to stop eating yogurt, bananas, chocolate, and to eliminate caffeine from my diet. I did as I was told but my stomach problems and migraines continued.
By the Spring of 2006 my health had deteriorated to the point that my body finally had enough. What felt like another attack of “gastritis” quickly evolved into fever, and sharp, stabbing pains on the right side of my abdomen. I ate antacids like candy to no avail, and had to sleep sitting up otherwise I’d wake up choking on stomach acid. I was admitted into the ER and went through a battery of tests, which indicated inflammation in my stomach (a shocker!) and small intestines. They attributed it to gas, gave me yet another script of antacid medication and sent me on my way. The medications didn’t work at all and I continued to get worse.
By June of 2006 I began to lose weight. In addition to the pain, headaches, nausea, and bloating, I began to experience new and disturbing symptoms. I could no longer look at computer screens without feeling dizzy, and everything that moved produced a visual tail. I started to feel like I was losing my mind, or tripping on some kind of hallucinogen.
Food began to scare me, since many things I ate made my symptoms worse. In the course of three months I dropped from an unhealthy 212 pounds to 165 pounds. I still sought out the help of doctors, now mainly gastroenterologists, who once again put me through a variety of tests. I had an MRI, CAT scan, at least 20 different blood tests, an endoscopy, a colonoscopy, parasite tests, and neurological tests.
Nothing produced answers. Frustrated physicians began to blame me for my symptoms, telling me that I needed to seek the help of a psychiatrist or a counselor. There was nothing more disheartening to be told that all your physical symptoms are in your head, that the pain and discomfort you are feeling are not real. I’ve got to admit that I did a lot of praying during those months.
By the end of October 2006 I began to experience excruciating pain when I had a bowel movement, which was often accompanied by fresh blood. I again returned to the hospital, only to have physicians shove their fingers in my anus, which was extremely painful due to my rectal tearing, as well as a bit embarrassing as I’m sure those of you who’ve had the same procedure know, and told that there was nothing wrong with me. It wasn’t until I brought in a picture of my toilet bowl filled with blood did my gastroenterologist begin to explore possible dietary causes of my symptoms. One of which was a test for gluten antibodies. I asked him why and he informed me that I may have something called Celiac Disease. Celiac Disease, he said, was an autoimmune condition created by the body’s inability to digest gluten. Gluten was a protein found in wheat, barley, rye, and possibly oats.
Although my test came back “inconclusive,” I decided to try and avoid eating gluten anyway. What could I lose? I was desperate. I had taken every medication given to me, as well as put myself through a variety of herbal dietary detoxification regimens, and stupidly enough, even fasted. Nothing helped. However when I eliminated gluten, I quickly noticed results. Within three days my rectal bleedingstopped, and in a few weeks I was having painfree bowel movements! However, gluten had taken its toll on me. When I visited my mother for Christmas of 2006, she began to cry as soon as she saw me. The last time she had seen me I was over 200 pounds, so seeing me at 145 pounds must have been quite a shock! We cried together and I told her not to worry, because I felt that I had finally found out what was killing me. As I avoided gluten my health began to slowly improve.
Once I started researching gluten and Celiac Disease, I found that my negative physiological reactions to nongluten foods were caused by a condition called “leakygut syndrome.” In people with Celiac Disease, gluten creates an autoimmune condition where the body begins to attack the villi (hairlike structures lining the intestines used for moving food particles and facilitating the absorption of nutrients), eventually flattening them. As conditions become worse, the intestines become severely inflamed and eventually begin to tear and create fissures. My intestines had been so damaged by my disease, that large, undigested food particles began seeping through the cracks in my intestinal walls into my blood stream. Once there they were attacked by my immune system and labeled as “intruders.” If you don’t know how the immune system works, once it identifies something as an enemy, that information is communicated to the rest of the body. The result was that I began to have allergic reactions to many of the things I ate, but especially nuts, seeds, and dairy products.
Severely damaged intestines also produce neurological conditions. Not only did I have a hard time looking at computer screens, something of a liability when in graduate school, but when I closed my eyes I saw what looked like strobelights flashing in my peripherals. Stores with a lot of visual congestion, like bookstores, made me dizzy. I was also seeing trails. When I moved my arms, even slowly, a visible trail resulted. It was worse with cars, birds, and anything else that moves. But worse than all of that was
the fogginess I felt in my mind. It was so hard to concentrate on anything that I suffered chronic headaches from the strain of trying to focus my attention. To sum it all up, it completely SUCKED!!!
It’s been over two years of healing now and I’m still not feeling as good as I did before I became ill. Some days are much better than others, but in general I always feel a little bit off. However, I feel unbelievably better than I did when things were at their worse, so I’m extremely grateful. I’m sure it took many years to have led to how sick I became, so it will most likely take quite a while to repair the damages. I eventually accepted the reality that there was no magic pill to make me instantly better. I realized that the rest of my life would be somewhat of a dietary challenge, especially when it comes to traveling. But as some wise person once said, what doesn’t kill you makes you stronger. I’m sure as new glutenfree products are introduced and awareness of Celiac Disease increases, living with dietary restrictions such as mine will get easier and easier. I just hope that I’m able to help as many people as I can have an easier time adjusting to glutenfree living.
Travis Sky Ingersoll
Great Resources and Links:
Check out my Gluten Free Cooking Blog. It has tons of useful information, recipes, product sampling, restaurant reviews, and tips to living a gluten free life. And it’s FREE!
http://www.travsgoneglutenfree.blogspot.com
Here’s my ever-growing list of used and approved Gluten Free cookbooks, GF products, and related products:
Trav’s Gone Gluten Free’s Amazon Store
Helping Hands Books is a social venture aimed at contributing to youth development:
http://www.helpinghandsbookstores.com
Miranda Jade
From our home to yours, Tina Turbin
If you have any questions or suggestions just email me at info (at) GlutenFreeHelp.info.
I know exactly what you are talking about. When you go shopping or out to lunch or dinner you constantly have to ask if it hasn’t got whatever it is you’re allergic to in it, what the alternatives are and then resign yourself to the fact that it could be another rather boring meal. That sounds like a nightmare. Fortunately, things are getting better. At least in Toronto. my hometown. In the past few years, I have discovered quite a few eateries that specialize in gluten-free cuisine. Hibiscus Café is just one of them, but it is my favourite one. A range of dished is not wide, but it sure tastes great. I hope that this information will bring you a new more positive look at living a gluten free life.