Mary & Joe's Personal Stories
We’re about as different as night and day and so are our roads to diagnosis. I am a 26 year old who was diagnosed with IBS in the mid-90s while Joe, 29, visited gastroenterologists since he was in diapers. Between the two of us, we’ve battled celiac disease for over 40 years without diagnosis.
I like to call myself a certified “carb-aholic”. If it contained starch, I’d crave it! My typical diet revolved around pastas, breads, pizzas and desserts. For years, I’d blamed my severe bloating and subsequent constipation on my diet and figured that if I increased my fiber and water intake, all systems would function appropriately. Yet, there were other times that within 30 minutes of consuming food, I’d felt as though there was a trap door between my stomach and my bowels. There was no clear pattern to my digestive system and after series of tests (like the enjoyable barium enemas), the only diagnosis my primary care doctor could give me was IBS. I was told to increase my fiber intake and was sent on my way. The bloating and constipation would continue until some random trigger would help to alleviate symptoms. And so, for years, I continued thinking I’d be living with this the rest of my life with no relief.
Early in 2004, I switched medications and thought that my acute GI symptoms were a result of that change. I put off setting up an appointment with a GI until my pants couldn’t fit anymore. My energy was non-existent and, at the end of a day, I felt like a slug. I’d wake up in the morning with a flat stomach and by the end of each day, it looked as though I swallowed a beach ball. I was losing weight yet was increasingly hungry. I’d eat, feel discomfort, hear my stomach growl, eat more and continue to bloat. The constipation had become so unbearable that I’d come to rely on laxatives. My abdominal pain so excruciating that I had to walk bent over. When the pain ceased, I had nausea. It was a vicious cycle that just didn’t make sense.
I went to a gastroenterologist who recommended the TTG test and, when I went to the lab, they thought it was a test for my triglyceride levels. Once corrected, my doctor wanted to schedule me for a colonoscopy/endoscopy series. Immediately following the procedure, he informed me that my small intestine was scalloped, my villi were destroyed and that I’d be in for a huge lifestyle change.
My gastroenterologist informed me that I was his first celiac. I had asked him about my next steps: where do I go to buy food, what tests do I get, is there a support group and so forth. Unfortunately, he just didn’t know how to answer the questions. He knew enough to diagnose me but didn’t know how to help me live with the diagnosis. That’s where my advocacy for change set in. Since that day, I’ve vowed to change how others learn about celiac disease. I searched the Internet, called tons of health food stores and just taught myself whatever I could. I have become my best resource.
I’ve been gluten-free for a year now and, although I still have residual GI issues, feel great. My energy has returned and I’ve learned as much as I can to make the GF lifestyle more manageable. I truly believe that celiacs need to rely upon one another for support and to advocate for change within the community.
I have been dealing with symptoms of celiac disease since I was only a few months old. Starting in the 1980s, I visited a GI doctor at Thomas Jefferson in Philadelphia on a monthly basis. He and his colleagues did not discuss the possibility that Celiac Sprue disease was the real culprit behind my GI problems. My father had always attributed my problems to colitis or IBS.
I’ve never really enjoyed pasta as much as Mary. I’ve always been a meat and potatoes type guy. For years, I would eat certain foods and, immediately thereafter or within a short period of time, I would be in the bathroom. Somehow I have managed to cope with this for almost 29 years.
After Mary found out that she had celiac disease, our entire family began trying to understand what this disease entailed and where to buy this specialized food. Through the help of the Internet and research done in libraries, our family was able to identify stores in the immediate Delaware Valley that carried gluten-free foods. It was a major learning curve for all of us.
Several factors convinced me to get tested for CD via a TTG test. While working on a project for one of my MBA classes, I interviewed a storeowner of one of the first gluten-free food stores in Milwaukee. She told me that the incidence rate amongst siblings was ten times greater than for someone else in the family to have the disease. Before speaking with her, I did not know the likelihood that I could have this disease. After I saw a news report on the Flyers owner, Ed Snider, and learned what a large array of symptoms can accompany CD, I decided that I should be tested and was more open to the possibility that I may have been living with CD for my entire life.
Our mother was tested before I was and we were all relieved to find that she does not have this disease. Soon thereafter, I was tested and my scores were off the charts and were much greater than the scores of Mary’s TTG test. I was not really convinced that I had it because I thought I did not eat enough gluten the day prior to my testing. So, I did a second blood test and came back with the same results: scores off the charts. I was then scheduled for my endoscopy to confirm that I do indeed have celiac disease. Within the last week or two, I had this procedure done and it was confirmed that I have this disease.
Fortunately, my sister has blazed a trail and we both understand what choices we have for food in the local stores as well as also via the Internet. In the near future, I will be seeing the highly respected physician, Dr. Alessio Fasano, to help put me on a path towards healthier living. My greatest challenge is my sweet tooth and being able to give up the foods that I have enjoyed throughout my life. Thankfully, I have the support of my family to help me and I have some choices to ease past this initial change of lifestyle.
Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.