Not Just an Intestinal Disease

Celiac Disease has the following stigmas; one, that it is purely an intestinal disease and two, that it is just a severe allergy. Both are quite simply, untrue. Celiac is an auto-immune disease with symptoms that affect a wide variety of body systems. From dental to psychological to gynecological...this disease can quite literally take hold of your life. Celiac Disease has been linked to other conditions including autism, diabetes, and other auto-immune conditions. A Celiac diet is very different from an allergy diet. Some food allergies are mild and the food can be consumed in small portions; this is not, at all, true of a Celiac, gluten free diet. Severe allergies with small consumption can cause anaphylaxis and death. In contrast, Celiac disease isn't likely to directly cause death; more likely than not it will cause intestinal cancer, typically lymphoma.

These stigmas have caused a whole lot of misunderstanding about the disease. From my personal experience, Celiac has caused all types of symptoms and complications. Successfully coping with the disease and the diet is dependent on having a good understanding of what is going on in your own body.

As I have mentioned in a previous posting, I am convinced that my Celiac disease became active when I was fourteen. I had been having chronic sinus infections and eventually had to have surgery. That surgery, I believe, is what triggered my Celiac to become active. I didn't have intestinal symptoms until six years after that surgery, but my life became very different in other ways.

I did continue to struggle with other health problems, to say the least. After my sinus surgery, instead of chronic sinus infections, I had repeated bouts of strep throat and eventually became a carrier. These bouts went on until I had my tonsils and adenoids out at sixteen. After my strep, I had repeated cases of bronchitis until they removed my lungs. Ok, they didn't remove my lungs, but there was still a pattern! In addition to my sinus infections, strep and bronchitis bouts, I also began suffering from endometriosis and hypoglycemia. I saw many different doctors for the endometriosis, all of which, wanted to perform surgery, as this is the only way to officially come to a diagnosis. However, I put off the surgery until I was twenty-one and had a doctor who I completely trusted and who I was comfortable with. In high school it wasn't long before the school nurse and my mother got to know each other quite well. It even got to the point that when I got sick they would send me home without permission because they knew my situation. There were other little problems I had as well. I could not grow my nails out, they would break and flake off. My hair was damaged and brittle and wouldn't take color very well. These things seem very little in the grand scheme of things but they were very bothersome and frustrating for me.

When thinking about those days, nothing sticks out more to me than the mental or psychological problems. Part of the reason I am convinced my sinus surgery made the Celiac active is because afterwards, for the first time in my educational life, I began to struggle with most every subject. I remember countless occasions from the eighth grade through college when a teacher or my parents or someone would get on to me saying things like, "you're smarter than this" and "you're just not applying yourself". And on most of those occasions it wasn't that I was not trying, it was that I really did not understand. I know this doesn't explain away all the things I did growing up, but nothing frustrated me more than everyone assuming I was lazy or didn't care. To be honest, by the end, after years of going through that frustration, I began to not care anymore.

In hindsight it's easy to say we should've known something was going on. But even eleven years ago not much was known about Celiac, and the fact that I had no gastrointestinal symptoms makes the thought of reaching a diagnosis back then unlikely. I have noticed that since starting my gluten free lifestyle I retain knowledge and can problem solve much better than I ever could before. It seems incredible to me that something as simple as a grocery store doughnut could cause such a wide variety of health problems from brittle hair to cancer. My doctors have told me on more than one occasion that I am stricter on my diet than I need to be. After thinking back on my teenage years in the manner I just described, I think anyone would be just as strict!