May is Celiac Awareness Month and many bloggers are promoting awareness by sharing their journey through disease, diagnosis, and recovery. I would like to join their ranks and share my story as well.
Celiac Symptoms in Teenage Years
My journey of noticeable symptoms started when I was in high school, although I wasn't diagnosed well into my 20's. Every day after lunch, much to my struggle to stay awake, I would fall asleep, like clock work in my French class. I was blessed to have the same French teacher my entire high school career, and she was wonderful enough to let it pass some days, to just let me sleep. I had an A in the class, was on top of the material, and fought like the dickens to keep my eyes open. It wasn't until years later after diagnosis that I realized that this was a side effect of my anemia due to the malnutrition that was taking place in my body.
During high school I had a number of chronic yeast infections. Every time they would test me for diabetes, as my grandmother was diabetic. And each time, it would come back negative. I just chalked it up to being "normal" for me. I'm sure after a while my doctor was tired of seeing me.
Chronic Fatigue In College
In college, I worked my butt off to get good grades. I often was taking a class load of 20 credits, while often working 20 hours a week on top of it. In general I felt okay, but was often plagued by headaches and a drastic need for a nap. Then halfway through my college career I started to have abdominal problems. (Though I must admit I had gastric pains my freshman year, the typical Celiac cramping that feels like you're having appendicitis.) I started to have larger than normal bowel movements, something that typically happens to Celiacs. It was rather embarrassing, and my roommates didn't seem to understand what my problem was. I started going to the bathroom on campus as much as possible, because there was greater water pressure and less chance of their being an issue with the toilet. And I just assumed that I wasn't eating enough fiber, so I started eating shredded wheat and oatmeal as much as I could, thinking that would alleviate the symptoms.
And towards the end of my college career, the anxiety disorder started to kick in. It was during this diagnosis that my physician's assistant (I swear the best doctor I've EVER had) noticed that I looked rather pale. She had the lab draw some blood and test my iron and hemoglobin levels. She was rather socked at the results, as was I. She said that my ferritin was so low that I shouldn't even be able to stand up or walk. She was amazed at all I was doing. From there she sent me to a hemotologist, where I would get daily (painful) iron injections, because it was obvious that for some reason my body was not absorbing the iron from my diet. I went through a series of other tests during this last semester on campus, and I seemed to be nauseous all the time. I would throw up bile, and getting through my classes was becoming a chore. Again, I was blessed with great, understanding professors at Central Michigan University. It wasn't until the end of my stay there that the hemotologist directed me to see a gastroenterologist. Since I would be going home to do my student teaching, I would wait to see one back home.
A Celiac Disease Diagnosis
What happened then was rather surprising. My mother had been an employee at Ingham Medical for over 15 years, and knew all the best doctors. She went with me to my appointment, and at this time she told the gastroenterologist that my dad and my grandmother both had celiac, and she figured that this is what was going on with me.
What! My dad had been "sick" all this time and I never knew about it. How was this possible? For starters, neither my dad nor my grandmother every talked about it or followed the dietary restrictions that it required. I later found out that my dad was even discharged from the army because they could not accommodate his dietary needs. When I learned more about what Celiac truly was, it made me concerned for my dad's health and I pushed him all the more to stick to the diet, and now he is much more careful about it. I've kind of made it my mission to alert others as well. I'm the (newly elected) President of my local Celiac support group, and I help to organize an annual Gluten Free Fair in Lansing, MI.
And because of my my own lack of knowledge of my family history, I make sure to let everyone know about Celiac, and the genetic component. That if you have celiac, someone else in your family HAS to have the genes for it, and they should ALL be tested.
Passion for Celiac Disease Awareness
Sometimes I think about how my life had been different if I would have known at an earlier age about the likelihood that I had Celiac disease. At the very least I would have been spared from some of the diseases symptoms, like the joint pain that my mom just assumed was growing pains, the many cavities due to the lack of formed enamel on my teeth (I really did NOT like my dentist), and the embarrassment I incurred during my college years. I may have chosen to be a doctor or another health profession instead of going to school to be a teacher. I often think it's neat that my birthday is September 13th, which is National Celiac Awareness Day, recognized for the birthday of Dr. Gee who was one of the pioneers of the disease.
So if I seem to go on and on about Celiac at times, or I seem to think that everyone should be tested, don't get frustrated with me. It would be my honor if I could help you understand the causes of some of your illnesses and I could lead you on the path to recovery. I know that not everyone has Celiac, but maybe if you know more about it, maybe you can help someone else out who may be experiencing some of these same symptoms but seems hard pressed to figure out why.
And I want to make sure that I point out that I have a great dad and that I in no way hold him responsible for his lack of Celiac adherence. It's more so the medical field that failed him, who failed to help him understand the severity of the disease, that it was genetic, and that he had to be keeping an eye out for certain symptoms in his children. I love you dad, and I'm so glad that you are making the choices now to follow the diet that is prescribed for you and are on the road to health and wellness.
Labels: Living Gluten Free